A life coping with MS

Where does the time go?

2012-02-26T21:03:00.003Z

It's been a month since I last blogged - and it feels like a day. The last few weeks have been so absolutely manic that time has simply passed me by.
And in that time I'm pleased to report that my body has thankfully being playing ball and I seem to be out the other side of the January relapse.
I've also had a review appointment with my consultant neurologist and he was generally positive.
Neurology appointments are funny things, especially for MS patients. The truth is that many of us will keep abreast of research news. We also keep in touch online, and I have found that by the time I see anyone in the medical profession I have already been assured by other MS'ers that what I am going through is normal ... or not!
And this was the case for this appointment, as he did not tell me anything that I didn't really already know.
However, my husband asked if he could give us any sort of idea as to the severity of my MS. He, of course, would not do so. He, and I, both know that the nature of MS is too uncertain for him to hazard a guess at what the future holds.

He did say that I have certain factors on my side. One, I am a woman. Two, I was diagnosed quite young. And three, my symptoms are sensory based rather than motor based.
All of these things are, apparently, a good thing.
Hearing this in the immediate aftermath of a relapse, I was inclined to laugh in his face.
But, for now, I'll take his word for it.

Finally, as the title of this post implies, time has been flying lately - and that also applies as regards my gorgeous daughter who is fast approaching the 16 month mark - eek!! Here she is in her latest cute-as-a-button outfit looking very sweet :)

Giving myself the chance to recuperate

2012-01-26T14:07:00.000Z

So, I'm writing this is bed ... in a quick ten minutes reprieve from doing ABSOLUTELY NOTHING. Yes, my body has given up. Bed rest called and I am trying to embrace it as best I can. And that has meant no tv, no books, no phone (yeah right!) - all imposed by myself because I have had to recognise that the only way I'm getting over and past this relapse is to look after myself.
The last week has been such a rollercoaster. My break in London was simply lovely. Selfish as it may sound, it was great to not have to get up to a baby in the middle of the night, stay in my pyjamas until lunchtime, eat in grown-up restaurants and have some quality time with friends.
But the trip was clouded slightly by the fact that my legs were continually in pain. So much pain that at one point I even exclaimed that childbirth was easier - and it was. Because this was pain like I have never experienced before - excruciating, mind-numbing and constant.
The bottom line is that I have crossed over into an MS patient was gets spasms - a label the medical profession call spasticity. Horrible word, spasticity. Makes me sound all wobbly or something.
I digress. The result of these nasty spasms is that I am now on more medication, called Baclofen. And you know what, I think they're working already. I slept well last night and while I'm still completely zonked, the pain has subsided.
Now all I have to get sorted is this brain fog, which is the name I have given to this strange sensation that my mind is filled with cotton wool - and my body is simultaneously dragging through mud. The only way to describe it is that I can do everything, everything just takes ages (this blog post has been in the making for going on an hour already, on and off!)
In the meantime, I'm embracing 'doing nothing' for now - and eating lots of chocolate in the process -because let's be honest, chocolate fixes everything, right??!!

Support and encouragement

2012-01-15T13:36:00.000Z

Quick update on the steroid treatment .... which is now on day six.
Honestly, I'm not sure anything is really happening, bar the side effects. I suppose they take time to work and my naturally impatient nature means I expect results overnight. But the reality is that I still have eight full days to do, so I'm not even halfway.
So, I'm trying to be patient, amid the sleepless nights and crazy highs that have me a bit jittery come 6pm!
But mainly I have been completely overwhelmed and humbled by the amount of support that my last blog post brought with it .... from my family, friends, colleagues - and also from those who have left comments on here, through my personal Facebook account and on Twitter.
For everyone who has taken the time to get in touch, to say 'keep your chin up' and 'get well soon' - thank you. Sincerely, from the bottom of my heart.
Those words of encouragement gave me a boost that no medication could ever do. Proof, if ever I needed it, that I am a very lucky girl indeed - to have such amazing people in my life that are making this crazy 'ride' I am on, not so bad after all.

The dreaded relapse strikes

2012-01-11T22:08:00.000Z

Totally gutted to be writing this but it's time to admit that I am currently in the depths of a horrible relapse. I guess one was to be expected but it's never easy when it hits.
And this one has brought with it new symptoms. Bleugh!
Basically my right arm, you know the one that I need for EVERYTHING, while still functioning, is painful and has this hard-to-describe dead-arm feeling.
And I know half of that makes hardly any sense but I'm putting that down to the equally horrible steroids that I've had to submit to - to try and fight off this bad boy before it has my arm totally useless.
Steroids are never good. Well, they are in that they are supposed to help kick the ass out of a relapse, but their side effects are notorious - hence the reluctance on my part to start taking them.
But, I'm nothing if not a pragmatist, and if the neurologist and my MS nurse says they're worth giving a go, then so be it.
Today is day two and I've been awake since 5.30am and in constant pain since the minute I woke up.
Sympathy is appreciated at this juncture, but, genuinely not necessary because, honestly, it's the sort of pain you get used to.
And I'm thinking that if it continues then that can only mean that it improves my pain threshold - and surely that means my next child birthing experience will be a breeze!
You see, ever the optimist.
Of course, they're also known for their ability to make you permanently starving, so I've all my nearest and dearest warned that I am NOT to eat everything in sight over the next 12 days. Pity I've written this while scoffing chocolates ... but I'm sick, so they're allowed, yes?!
And some of my Twitter friends with MS have warned me that they also induce a state of insomnia - a condition I suffered from while pregnant and which I would very much like to avoid because a mum with no sleep does not a good mummy make!
Finally, I'm all booked to go to London next week for gloriously girlie weekend, which I most definitely will not be missing. Under. Any. Circumstances.
There's nothing else for it. I will rest from now until then and let the steroids do their best work.
Wish me luck.

Starting as I mean to go on

2012-01-02T21:47:00.003Z

First off, apologies to any regular readers for my prolonged absence.
There's no proper excuse, life has merely taken over.
My baby girl celebrated her first birthday on 11/11/11 - which was a brilliant day. Everyone tells you the first year flies but it honestly did. A close friend had her first baby on 08/11/11 and when I held him for a very lovely cuddle I could hardly believe Charlotte had once been so small, and so dependent, just twelve short months ago. Now, I can hardly keep up with her. As we say in Derry, 'she could buy and sell you' already!
And then of course the madness of Christmas swallows up December and before you can say diet the New Year arrives.
This year I'm not imposing any ludicrous resolutions on myself. Well, not any that require giving up anything. Rather, I intend to be less hard on myself. Give myself a break.
I figure that learning to negotiate the path along which MS is taking me is a hard enough journey without me putting pressure on myself to be the perfect mother, wife, daughter, friend and colleague as well.
Because I'm beginning to realise that nobody, no matter how hard they try, is perfect - least of all me!
That said, I do hope to blog a bit more often this year. There have been many times in 2011 when I have written a post in my head and then never got round to actually putting my thoughts on here.
In the meantime, here's a very cute picture of my daughter taken on her birthday :)

Getting over the grief

2011-10-24T20:44:00.001+01:00

There's a general theory out there that everyone who suffers a loss goes through five stages of grief in order to come to terms with what or who has gone.
In fact, many people believe these stages are more applicable to someone facing an illness or disease rather than someone who has actually lost someone.
And I'm starting to understand why.
Because while I always state, very clearly, that I am still 'me' - of course having MS has changed me and coming to terms with 'Catherine who has MS' hasn't always been an easy ride. There's no doubt in my mind that I've grieved for the me 'before'.
So, in case you're wondering, the five stages are denial, anger, bargaining, depression, and acceptance.
The stages don't always work in this order and a few theories I've had a quick read at also say that they can pop in and out at different times.
For me, unbelievably, the first stage I encountered was probably the one most people face last, and that's acceptance.
On diagnosis I was very stoic, determined and I suppose this is because I finally had a reason for the previous months (even years) of feeling unwell. Finally I had a name for everything that I thought I was imagining.
But acceptance doesn't mean that I haven't had days of the other four stages.
In fact, I started writing this post some weeks ago when I was going through a 'low' period - I guess that would be the depression stage. And there wasn't anything that triggered it. I simply felt incredibly emotional and teary-eyed. And it was horrible.
Along the way I have also had moments when I've felt the anger bubbling under the surface until I can hold it in no longer, shouting out in pure frustration, 'Why me?'
Because I am bloody angry. I'm angry that no matter how hard I've worked, how much love and care I've shown others, that this blasted illness still choose me.
It's often after an angry moment that the bargaining stage takes over. In my mind I can hear myself saying, 'Maybe they did make a mistake. Maybe if I can just be a better person the MS will disappear.'
But in my heart of hearts I know it's going nowhere. I mean, the NHS wouldn't have me injecting myself with very expensive medication if I didn't have MS now, would it?
Ah, and in creeps the denial - without me even realising it.
If only it were true.

MS medication and me

2011-09-21T21:56:00.000+01:00

I've said it before but I'll say it again, every person with MS is different.
And that's not just personality-wise but medication-wise too.
But for me, the MS medication round looks something like this.

Every morning I take Tovias 4mg ... I call this the wonder drug because it controls that oh-so-lovely issue of my bladder. In essence it deals with urgency and frequency. So basically, I'm not rushing to a bathroom every five minutes, and as my husband will tell you, this has made long car journeys a LOT more pleasant!

During the day I also take three doses of Neurontin 600mg. (Also called gabapentin) This is usually prescribed for epilepsy but in MS patients it is used to help with neuropathic pain. In my case, that's pain in my feet - something I have moaned about in the past! I've been on this for just three months but already it seems to be working. It's a hard one to work though because you have to build your dosage up slowly and it takes time to get to work. But I have gone through that early stage and thankfully it is taking away some of the more intense pains, especially at night.

Finally, I inject Rebif 44mcg, three times a week using the RebiSmart device (pictured). This is a disease-modifying-drug (which I spoke about before here) and I have to stay hopeful that it's doing what it should be - reducing relapses. This is hard to quantify because there's no knowing if the relapse wouldn't have appeared with or without the drug. But the science says it works, my neurologist thinks I should be on it, and so I'm giving it a go.

The RebiSmart device makes the process a whole lot easier than it would have been when the medication first came on the market. I never have to see the needle and once it's fitted correctly I place the machine on my arm, push a button and it does the injecting for me. I will say it doesn't make the injection any less uncomfortable but it helps.

Finally, I take Ibuprofen 400mg on the nights I inject. This helps stave off the flu-like symptoms that the Rebif ravages on my body. These are something that not everyone will exeprience but they are also a well documented side effect. On one occasion recently I forgot to take the Ibuprofen and it was a night I would not like to repeat any time soon. The pains are unlike anything I have ever experienced before, they rush into every bone and muscle, making a decent night's sleep a distant dream.

So there you have it ... MS medication and me.

Then and now

2011-09-21T13:15:00.000+01:00

Today I'm wearing a gorgeous top from the Barbara Hulanicki range for George at Asda. Okay, so I know I got it from a supermarket but this woman founded Biba and the 12 piece collection she has put together is not only bang on the money style-wise but also bang on the money price-wise!
Anyway, I digress.
Three years ago, I would have paired it with the highest heels I could find and walked confidently into work.
This morning, I have had to make do with a pair of sensible flats.
More to the point, I specifically bought the top, not just for its fashion credentials, but because it has lovely long arms - to cover the injection sites you see.
How times change.

Putting myself out there!

2011-09-03T10:39:00.000+01:00

The day before I had Charlotte I was filmed by the MS Society for their new website. It has been almost ten months but the media team's hard work has finally come to fruition and the site is now 'live'. It's a fantastic resource of information for anyone diagnosed with MS, and their family and friends too.
Aside from the films, they have re-designed the site so that it's easier to get around and I have to say it's a brilliant 'makeover'!
So, if you fancy a watch I feature in four seperate films - I've posted the first below. It also comes with a disclaimer in that I had Charlotte 24 hours later so please excuse the bloated look!
Can I also say that it's taken me over a week to post this here because I was so embarassed when it first appeared - so please, be nice :)

MS and the 'disabled' label

2011-07-22T15:58:00.001+01:00

As someone who has MS it will probably come as no surprise to you that I am in possession of the ubiquitous blue badge. I applied for it for various reasons but the main ones include being able to have close access to shops and when my bladder is at its worst, a toilet.
When I go shopping I always plan my shopping route in advance so that I can complete all of my chores without walking too far unnecessarily or doubling back on myself - thus reducing the pain in my feet.
And it's a running joke with my mum that I know every bathroom in Derry (and I may add, every other town or city I have ever visited, thanks to my good memory for such information).
But using the blue badge is not something I enjoy or have become comfortable with.
It sound silly but I always feel that people who don't know me stare when I get out of my car looking, to them, perfectly healthy. There's no wheelchair or stick - and to many that means I'm not disabled as the badge suggests.
I guess it's an education exercise but disabled means so much more than not being able to walk unaided.
Recently I got into my car and was about to reverse out of the space when a man stood behind me waving a disabled badge. Naively I believed he simply wanted the space after me and was claiming it as his own before anyone on the busy road drove in after me.
But, as I reversed he shouted over, 'You know you're parked in a disabled space?' - with a tone that implied that he didn't feel I should be there. I instantly leaned over, waved by own badge back at him and replied, 'Yes, I have MS if you must know'.
The incident really shook me up. He was aggressive and frankly, rude. To his mind, he had seen a happy, healthy looking young woman walk up to her car with some friends and promptly drive away. He obviously hadn't bothered to check I had a badge displayed and jumped to his own, wrong, conclusions.
This sort of attitude is hard to change. And for someone like me who hates being labelled 'disabled' anyway, it just made me feel about two feet tall.
I don't expect everyone to understand what it's like to have an illness like Multiple Sclerosis but I certainly think that a touch of compassion now and again wouldn't go amiss.
As for judging me without knowing me, that's another issue altogether and one I'll talk about further another day.

Born This Way ...

2011-06-23T20:37:00.001+01:00

... as in, the Lady Gaga song.
I can't get it out of my head this week, and Charlotte is probably sick of hearing me sing it, but it has got me thinking.
Was I born with MS mapped out in my DNA, or is it something I have had the unfortunate fate of getting later in life?
It has to be said though, with no answer forthcoming, I'm happy enough to face it head on regardless. The real question is, would I have lived my life up to diagnosis differently if I had known Multiple Sclerosis was around the corner.
Put simply, probably not. Some would think I would have looked after myself better, got lots of Vitamin D, ate less saturated fat (not because they say this helps people with MS, just because it would help my mid-rif!) and maybe drank a lot less wine - but in actual fact, if anything I would have done the opposite.
If I had known I was going to have MS at 27 I would have travelled extensively, been more spontaneous, and cared a hell of lot less about what people thought of me over the years.
Since I didn't have the benefit of hindsight I'm still pretty satisfied of how I spent my days pre-MS - laughing, dancing, drinking, all surrounded with friends and family - but most significantly, I had the fortune to meet my husband before I became 'Catherine who has MS'.
I mention this because I know some people with MS have talked about how hard it can be to meet someone post-diagnosis - telling them, when to tell them, what to tell them - and I'm so blessed to know that J fell in love with me - the woman born just the way I am now, just without the label of MS.
After all, I'm still laughing, dancing and drinking with my family and friends - nothing has fundamentally changed, I just face the world a little bit differently.

Nobody's perfect

2011-06-17T11:59:00.001+01:00

I've had a tough few weeks. Generally, I give the appearance of someone who is coping very well. I'm back at work one day a week to ease myself back into the madness that is local newspapers, there are washed and ironed clothes in everyone's cupboards, the floors are mopped and we are well fed.
But inside I'm struggling.
And the reason is very simple. I expect too much of myself.
Everything may be done but at what cost. Today I think it may be my sanity.
Because my brain is on overload. You know those days when you your mind is on a constant loop ... well that's been me for the last fortnight. And quite frankly I'm doing my own head in!
It's easy fixed - I just need to use a diary better - but instead I've been running everything that needs done over in my head ... again, and again, and again!
The situation hasn't been helped by the fact that I haven't been great MS wise (feet playing up, horrible fatigue, flu-like pains after injections) and Charlotte has been up teething leaving me with unbroken sleep and a body that simply doesn't want to do what my mind is telling it.
I'm also pushing myself physically. This weekend I'm off to Sligo for one of my best friends' hen night - which I wouldn't miss for the world - but it involves a two hour drive which I know will drain me. So as a sacrifice I'll just drink less champagne :)

Then next weekend we're off to Scotland to visit my family - in what will be our first family holiday. And I am really looking forward to it but the organisation required is sort of freaking me out.
So, in order to redress the balance the solution seems obvious - I need to chill out!
I also need to remember that I'm not always going to get everything right, done on time or perfectly - but that that's ok. After all, no-one gets it right 100% of the time.

MS is not a life sentence

2011-06-07T21:01:00.000+01:00

As well as writing my own piece last month for the local paper about life with MS my colleague Andrew Quinn also came to speak to me on a separate occasion so he could also write about my diagnosis and life thereafter. And I have to say it was a strange experience to be on the other side of the writing process. But he did a brilliant job, capturing everything that I wanted to get across perfectly - and being very complementary, which also helps! So, here it is in its entirety for anyone who missed it - including the brilliant photo Andy took to accompany the article.

At first glance Catherine Doran cuts the appearance of a woman who knows what it is to feel deliriously happy. Catherine, 29, married her now husband Joe Doran last March and last December the newly weds celebrated the birth of their first child, a baby girl, called Charlotte.
Like every other bride-to-be Catherine relished organising her big day and when it finally arrived it did not disappoint.
“Marrying Joe and when Charlotte was born were the two happiest days of my life,” recalls Catherine tearfully. “I was so emotional when myself and Joe exchanged our wedding vows - especially when we said ‘in sickness and in health’.”
The reason this part of the wedding ceremony resonated with Catherine was because one year earlier she had been diagnosed with Multiple sclerosis (MS).
“When you think about it, most young couples are in good health when they get married,” says Catherine. “I was diagnosed with MS a year before I got married so when Joe was reciting the ‘in sickness and in health’ part of the vows I became very emotional.”
Catherine and Joe celebrated their wedding day at the An Grainan Hotel, Co. Donegal just outside Derry. Only close friends and family were aware that Catherine had MS but her husband Joe decided to talk about Catherine’s condition openly during his wedding speech.
“There wasn’t a dry eye in the house that day,” says Catherine through a mixture of smiles and tears. “Joe’s speech was the most wonderful thing I’d ever heard and when he told everyone in the room that I had MS. Joe’s speech made everything feel so right that day - it meant so much to me.”
Adversity is something that Catherine has become all too familiar since her diagnosis but still she has managed to experience the things that most young women aspire towards. Since finding out that she had MS, Catherine has had her wedding day, given birth to Charlotte and both her and Joe bought a wonderful new home on the outskirts of Derry.
Catherine is currently enjoying her maternity leave from her job as a reporter for The Derry Journal; she has used her time away from work extremely well; she keeps an online account of what life is like for her through her blog titled ‘A life with MS’. Catherine is also an active member of the Foyle branch of the MS Society and on her Twitter profile she warns all who ‘follow’ to ‘expect MS awareness tweets’.
“I knew virtually nothing about MS before I was diagnosed but now I am an expert in it,” she smiles. “I want to stress a very serious point - a life with MS is not a life sentence. I might be ill but everyday I am determined to live as normal a life as possible.”
Catherine first started to notice that something was wrong in 2008. Various symptoms manifested and after collapsing both at work and at home Catherine was referred to a Neurologist Consultant by her GP.
“In the beginning I started to experience what many MS sufferers experience and that is problem with their bladder. All of a sudden I was having to go the toilet a lot more than usual. It would happen very suddenly - it became a serious issue for me so much so that when I was going out I had to know where the nearest toilets were.
“I was working in Donegal at the time and I remember on the way to work one day I had to stop and use the toilet seven times along the way. There’s not a toilet on the way Letterkenny that I don’t know about,” she laughs.
One of the most common symptoms experience by many MS sufferers is feet pains. Catherine says that her doctor asks her, on a scale of one to ten, how painful her feet are. She explained that since her diagnosis and with the help of painkillers the pain in her feet is never below three.
“MS patients suffer terribly from fatigue,” she explains. “I found that I put a lot of pressure on my feet they would be very painful a few days later. It took getting used to and thankfully, fatigue hasn’t been a major issue for me for the last four or five months.”
After collapsing twice Catherine went to see her GP and was then sent to have an MRI scan in Coleraine.
“Anyone who knows me will tell you how fiercely independent I am - so much so that I drove myself to Coleraine for my scan. I thought it was just routine - although I felt unwell, I was still able to work and get on with the day-to-day things.”
Catherine met with the consultant a few weeks after her scan to find out her results.
“I couldn’t believe it,” she says. “I asked him for my results and he said that he thought that I might have MS. I didn’t know what to say - I lost my voice and he basically threw his hands in the air signalling that there was nothing they could do for me.

After the initial shock of her MS diagnosis Catherine returned to work, got married and gave birth to Charlotte. Despite her admirable courage and stoicism she said that her first ever relapse during the Christmas of 2009 was one of the most lonely periods of her life.
“I was so scared when I went through the first relapse. I spent a lot of time along by myself and it’s not nice sometimes when you’re alone with your thoughts. However, I have a very close family and circle of friends - along with Joe they helped and supported me. Without them I don’t think I’d be in the position I’m in today - they were all just so supportive.”
An example of just how determined Catherine was to limit the affect her condition would have on her life occurred when she and her friends went to London for her hen party in February 2010.
“It was the month before my wedding and although my maid of honour had organised the trip around my condition I was hell bent on wearing high heels on the first night of my hen party.”
This week was MS Awareness Week. Asked what her message would be to people with the condition, Catherine pondered for a few seconds, took a deep breath and said:
“Stay positive because it’s only way to rationalise what’s going on,” she says honestly. “I can only speak for myself but I found that by staying positive it helped me through my toughest days. I am very lucky that I have a husband like Joe and that I have such an amazing family but people with MS have to know that the help and support is out there.
“The support that I got from the healthcare professional in the NHS was just amazing - the MS specialist nurses have been there for me every step of the way and Terry from the Foyle branch of the MS Society has just been second to none.”
Catherine has spent the last few years highlighting MS and she urges everyone with the condition to sign up to the national register. She holds out hope that someday a cure will be available but at the minute she is setting her sights on goals closer to home.
“I definitely want Charlotte to have a few brother and sisters. I’ve always wanted a big family and although I have to be realistic I am not going to let my condition stop me from giving my family the best possible life.”

Sign up now!

2011-05-24T20:33:00.001+01:00

To mark MS Week the MS Society are urging everyone who has MS to sign up to the MS Register. It aims to track everyone across the UK who has the condition, thus giving health providers, and the government, a better idea of the numbers who have MS and how it affects their mental wellbeing and daily life in general.

I signed up 15 minutes ago and it honestly takes ten minutes to do. It's such a fantastic idea I am aghast that no-one has thought of it before. After all, if the health trusts and government don't realise the extent to which MS infiltrates every corner of this small country then they have no idea of the resources and funds needed to cope with it.

So please, if you're an MSer living in the UK then take ten minutes to fill it in ... then we can all say we did our best to let them that hold the purse strings know just how big of an impact MS is having on our population.

And to make it easy I'll even give you the website address ... http://www.ukmsregister.org/ Now go do your bit (said with a bright smile and not a bossy tone)!

Raising MS awareness

2011-05-23T07:52:00.000+01:00

** As this is MS Awareness Week I have written a short piece for the Derry Journal - my employer! It aims to educate readers about the condition and is also a general oversight of my MS story. **

Aged just 27, I was diagnosed with Multiple Sclerosis just under a year before my wedding day. It was a shock revelation because while I hadn't been completely well in the months beforehand, I wasn't really unwell either. Niggly health issues were definitely there but I never believed for one second that I had an illness that's life-changing and currently incurable.
Headaches were recurring at a frequently high level, I had constant black shadows under my eyes and was constantly running to the bathroom. I had also collapsed twice for no apparent reason and suffered various bouts of vertigo so in retrospect it seems obvious that there was something inherently wrong.
All of these little things were in fact symptoms of MS. Isolated as one thing after another they seem innocuous but gathered together they, and a confirming MRI scan, pointed to nothing else.
Two years later I pretty much know all there is to know about MS, especially the form which I have, relapsing-remitting. This means exactly what it says on the tin in that it comes and goes. I have had one serious relapse, affecting my feet, and they continue to blow hot and cold. I can walk but sometimes this is under serious pain, others days they just tingle, and on others they are simply uncomfortable.
Just two months ago I started on an injectable medication called beta-interferon. This means I have to inject myself at home three times a week, which initially seemed like a huge deal but is already feeling very normal and part of the routine. It won't 'fix' me but it is supposed to reduce the number of relapses I will have and their severity. The MS nurses, Fiona and Carole, based in Spruce House at Altnagelvin Hospital, have been a godsend throughout this process. Their expert help and information is quite simply invaluable.
The last 24 months have also been filled with other milestones for my husband Joe and I. Our wedding day went ahead as planned, as did our brilliant honeymoon halfway around the world to Hong Kong, Bali and Singapore, we moved house a year ago and six months ago I gave birth to our first baby, Charlotte.
Choosing to have a family was a huge deal, but only in the respect that it's a huge responsibility - for anyone. The fact that I have MS didn't come into it, apart from delaying the beta-interferon process until Charlotte arrived safely.
If anything my life has been more happy since my diagnosis. My outlook on what lies ahead is also more positive than negative. It's true that a life with MS is inevitably unpredictable. Relapses can happen at any time, last for any length of time and can prove disabling. However, I firmly believe that no-one can truly plan ahead and I am no different in that respect.
This week, throughout MS Awareness Week, the MS Society will be launching a new website and I will be featured across the new content in a series of videos. These were filmed the day before I gave birth to Charlotte but I felt so strongly about letting others with MS know that it's not the worst thing that can happen to you, that I filmed on through the early twinges of labour! It was a brilliant experience and I truly hope that anyone newly diagnosed with watch them and see that life most certainly does go on.
A fellow MS-er made a brilliant point last week when she told me 'it isn't the cards you're dealt with that matters, it's how you play your hand'. And let me tell you, I'm playing my hand like I have four aces up my sleeve!

MS nurses are vital

2011-05-18T16:26:00.000+01:00

Regular check-ups with the neurologist are part and parcel of having MS. I talked about the last visit here and it's pretty clear that I found the entire process unhelpful. But I had my first appointment post-pregnancy last week and because I am no longer with child I was able to get some help.

Most significantly, I have been given tablets to help with the neuropathic pain I continually have in my feet, especially the right one.

These, I have been told, can make you drowsy so I have been increasing my daily dose gradually and so far, just a week in, they seem to be helping. In saying that I have also been trying very hard to take things a bit easier and the change of pace isn't a bad thing either.

I have also been attending a series of talks that have set up by my local health trust for those newly diagnosed in the past two years. They have been really helpful so far and are proof that a dedicated MS team - in this case the Trust's two dedicated MS nurses - are worth their weight in gold.

There is talk that the current government may look to save money by removing funding for specialist nurses and I cannot stress enough how much of a mistake this would be. The MS nurses I have contact with have been a major source of support and information. Ultimately I believe that they save the NHS money in the long run because they help MS patients manage the condition before it gets so bad that they are admitted for treatment.

My aim over the next week is to write to my local MP and MLA's in an attempt to make them realise how vital MS nurses are - because no-one knows until they have to personally use them.

Fifteen minutes of fame

2011-05-07T12:47:00.000+01:00

MS Week for 2011 will get off to a start in just over two weeks - from Monday 23rd-Sunday 29th May - and this year the MS Society has undertaken a campaign to 'Get MS on the map'. As part of that campaign they are setting up video booths across the country where MS patients can tell their story. These stories will then be uploaded to a website - www.mapms.org.uk - and the idea is simple, share your story and let people know how we cope and live with MS.

Now, I've gone one further - the day on which I went into labour with Charlotte two lovely film-makers from the MS Society travelled over from London to film me for a series of pieces which will be integrated into the MS Society website. Initially I was to speak about being newly diagnosed and how I coped with the news. But because I was pregnant I also spoke a little about my decision to have children and how the pregnancy had gone.

Those videos will go live during MS Week - and I'll let you know where you can see them then. But for now, some of the material they filmed has been used in the campaign video for the Map MS website and I've posted it below if you want to watch!

Can I just put a little disclaimer - put it down to vanity - but my waters literally broke three hours after they left so I'm VERY pregnant looking so please excuse the bloated look I'm sporting :)

A day in the life

2011-05-03T20:47:00.000+01:00

Life has definitely changed now Charlotte is here so here's how my day looks at the minute.

Charlotte used to sleep until 7am but she's been waking at 6am this week so I'm hoping this early start doesn't become a regular occurrence - that hour makes a difference like you wouldn't believe.

Then it's a bottle and nappy change for the wee lady before I take my medications and a cup of Earl Grey. Tea is a big part of Northern Irish life but I hate the regular stuff, especially brewed to within an inch of its life. I just pour over the water, take out the teabag immediately and drink while it's still hot. Although I have been known to take a cup that's cooled down to freezing while Charlotte takes priority!

A wash is thrown in the machine, the place tidied round and I'll sit watching the breakfast news, always on BBC1, for an hour or so while I wake up proper. And despite my husband working for local BBC radio I rarely switch it on, I'm more of a TV kind of gal. He usually gets home for a break around 10am so I'll make him his breakfast and then pop Charlotte down for one of her legendary cat-naps - she sleeps for 40 mins if I'm lucky, it's normally 20.

I find time somewhere along the way to send a few tweets, usually about 4 a day although this number does vary - some days it's 20, others I write none at all, depends if the chat is interesting enough!

Usually I plan a trip out of the house, even just for coffee with friends or a walk in the park - anything to get out for an hour otherwise I feel like I've done nothing with my day. The activity will depend on my energy levels and whether my feet are painful or not. In recent months I've had to admit that taking it easy is no bad thing either so if I think I'm better staying at home I'll invite someone round - I love company.

Joe's home mid-afternoon and we have some family time, playing with Charlotte, laughing at her little expressions and marvelling over how quickly her personality is developing.

Dinner is something homemade, we rarely eat takeaways or ready meals, and I make the majority of Charlotte's meals from scratch too. I do buy organic fruit purees because to be honest, they're 100% fruit and if I was to buy fresh fruit and puree it myself it wouldn't only take forever but cost a fortune too - so while I like her to eat well I'm not stupid, sometimes convenience is just as good.

Her bedtime is around 7pm and she's usually no bother so our evenings are our own. Once she's down I take an hour to sort bits and pieces out, maybe do a spot of ironing, which is my least favourite household chore so I keep on top of it rather than give myself a huge pile!

Then Joe and I will settle down to read the papers or watch a spot of TV. I'm loving Sky+ because we can save the series we want to watch together for when Charlotte sleeps. Although the new Sky Atlantic channel has us spoiled at the minute so we switch between Boardwalk Empire, the Sopranos or Game of Thrones. If it's a weekend night we'll have a glass of wine and chill out.

Three times a week I inject my DMD's so I get out my little record book and double check I'm rotating my sites properly. Then I inject before I have too much time to think about it and it's bed for 11pm latest.

Fabulous friendship

2011-05-02T19:50:00.000+01:00

I read somewhere recently that you will have around 50 acquaintances in your life but will only count five of them as true friends. I have a sense that this is very true but I must also be a very lucky person because I can honestly say, hand on heart, that I have more than five people who I would trust with my deepest secrets and hopes.

But it's also true that there's probably only three who I would ring at 3am if I needed a chat, or more likely, a shoulder to cry on. In recent years the need for middle of the night hand-holding has greatly diminished - mainly because my poor husband puts up with most of my moaning and groaning!

However, while my family are generally fantastic it's also true that friends are the family we choose for ourselves. And in recent years my friends have been a major source of support. They know when I want to talk about my MS - which isn't very often - and when not to ask. Lately, they are also the ones whom I love meeting for a coffee or dinner, leaving Charlotte with her dad, so that I don't forget who I am besides being a mum.

So, tonight's post is a big shout out to 'my girls' - you know who you are - thank you for being there, and thank you for letting me be me.

What is Multiple Sclerosis?

2011-04-30T07:28:00.000+01:00

The day is I was diagnosed this was the ultimate question running through my head. I had interviewed patients with MS for a few articles so I did know a little about what it meant for me. But in-depth knowledge alluded me. So, I turned to the internet.

And these were the sites I found useful then ... and a few I have found since.

First off, the MS Society site - www.mssociety.org.uk
This site has a wealth of knowledge that is probably unrivalled. It's also getting re-launched next month as part of MS Awareness Week so keep an eye for a new design and even more information than ever before. I'm also going to featured on here in a series of videos talking about my experiences, filmed on the day I went into labour (more about these in a future post!).

Second up, the community site that was set up to bring together those with MS. Shift.ms aims to give younger patients with MS a voice and a chance to talk to others. So if you want some first-hand stories about what MS means then this is the place to go. http://shift.ms

Other sites that are full of information include www.mstrust.org.uk and www.msrc.co.uk

Finally, a site that brings together a huge amount of MS bloggers. www.msbloggers.com
This is what I really wanted that first day - real people talking about real issues. If you really want to know what Multiple Sclerosis is then settle yourself down for a few hours and get reading here!

A touch of self-promotion

2011-04-29T20:35:00.000+01:00

Oh dear, the challenge for day three is to get readers to tell others that my blog exists. Which means a rally of self-promotion - and, yes I'm confident, but not really very good at putting myself out there so ferociously.

I follow some very lovely people on twitter and I am always astounded at how they promote their blogs with such ease. And I don't think they're overly in-your-face either. But I have this sense that I will come across as pushy.

The issue with this is mainly because I never started the blog to be widely read - and those that have read from the start will know this - but as time has gone on I have had this sense that what I write may help others with Multiple Sclerosis, their friends and family perhaps, and if at all, maybe raise awareness about an illness that affects so many but isn't the most well known.

So, for one day only (for now anyway!) I'll ask you all nicely - if you like what I write, spread the word. Maybe give the blog a quick link on Facebook or leave a comment that gets people talking. You can also find me on twitter - @catdoran - and if you would like to link me on there too then an extra thank you comes your way!

My top tips for the first time mum

2011-04-26T20:14:00.001+01:00

In the run up to having Charlotte I read a few books and the odd website, to get some idea of what to expect of pregnancy, labour and the associated paraphernalia surrounding the event.

Some was worth reading, others not. Now, a few of my friends are currently expecting and they've asked me some advice based on my experiences. So here they are, my top tips to prepare you for becoming a mum for the first time!

1. Fill your freezer while waiting for the baby to make an appearance.
All the books tell you this one but I scoffed slightly at the idea. After all, lots of guests would be calling with dinner pre-cooked for us. Yes? No! You do get lots of visitors but generally they just want to coo at the baby, not feed the mum. I did a few portions of lasagne, some soups and pies - and they were all utilised in the first few weeks.

2. Expect lots of visitors.
Following on nicely from tip number one! Visitors are an expected part of having a baby so get your cupboards packed with tea, coffee, sugar and biscuits. Just make sure to ask them to make it themselves. And don't be scared about asking them to hang out a load of washing, wash the dishes or peel your potatoes for dinner - after all, if they're friends and family they'll be happy to help.

3. Expect your body to feel as though a bus has run over it.
Thankfully I can safely follow this comment up with - it will be back to normal pretty soon. BUT, don't expect miracles. You've just had a baby.

4. Your hormones will be all over the place
I expected the baby blues but honestly, it was a reality check to see how quickly I went from happy-go-lucky to floods of tears. I wish someone had told me beforehand just how much your emotions take over. So, just go with it, ask your partner to be patient and eventually they'll settle down. I should pop a quick disclaimer here regarding post-natal depression. I'm no doctor but it's a very real illness so if those emotions aren't settling down by week six or so then it will do no harm to have a chat with your GP.

5. Your life will never be the same again.
I hated people telling me this when I was pregnant because I'm not stupid, of course everything was going to change. But they were right. However, while it has changed it certainly isn't over, in fact it's the best time of your life. Enjoy it!

Fat? At three?

2011-04-26T15:23:00.000+01:00

As the new mum to a gorgeous baby girl I was horrified this week to read that over half of all three to six year old girls think they are fat. Fat? At three? I don't think I even knew was fat was when I was ten never mind three. And I didn't grow up that many years ago.

In fact, I was a child in the eighties with my teenage years played out across the nineties. And yes, I do remember worrying about my weight, but only when I got to sixteen and discovered boys. Looking back it's scandalous that I even thought I was 'fat' then. A mere size eight I was in fact probably too thin!

So to think that our little ones are now developing body issues at such a young age scares the life out of me. Being a child is all about having fun, and NOT worrying about anything at all, never mind weight.

Part of me hates to say it but I believe that school policy regarding snacks is somewhat to blame. I say part of me because I am a huge advocate of healthy eating and definitely believe in the old adage everything in moderation. However, I've heard my friends with children talk about how strict the schools now are about break time snacks and I wonder if it's their over-zealous approach that has kids paranoid.

They are constantly being told that crisps and sweets are bad for you, that it's unhealthy to be overweight and it is only a matter of time before the constant bombardment starts to take its toll. Growing up we were never denied anything, my mum cooked us good home-cooked meals every night and she always said, 'once the treats are gone, they're gone' - ie. if we wanted them all on day one then don't be asking for more on day two when there was none left!

Personally I can safely say that I spent my university years worrying about my weight more than at any other time in my life - and it's when I put most on - I blame the drink! Now, one baby down, I am more happy with my shape than ever before - and that's despite the stretch marks and the toll pregnancy and labour has inevitably had on me. I can only hope that my precious daughter follows my relatively positive outlook as regards her weight because 'fat' at three just isn't sitting well with me at all!

30 day blogging challenge

2011-04-26T15:01:00.000+01:00

I think I may be mad but I've signed up to take part in a 30 day blogging challenge. The idea is simple - I get sent a topic to blog about every day for 30 days and hey presto, I write.

Now that may seem like an easy task but I'm already guessing I may run behind schedule - especially with Charlotte taking up so much of my time at the minute. BUT, I really love writing on here and I'm hoping it will broaden my horizons about what I actually talk about.

So, wish me luck .... here goes!

Linking up with other MS-ers

2011-04-25T20:52:00.000+01:00

As something a touch more light-hearted than the last few posts I'm posting a little 'meme' I was asked to complete for the MS support site shift.ms. They are re-launching their website in coming months and I am delighted to be asked to feature as part of their 'blogs we love' list.

The site was only set up a few years ago by a MS patient who wanted to create a place for younger MS patients to 'meet' one another. It's a brilliant resource, especially for those just diagnosed, and I sincerely hope that some of my experiences could maybe help someone else.

Anyway, the 'meme' goes as follows - and it took me quite a while to complete. Maybe if you get a chance you could do the same and post your answers below ... I would love to see what you come up with :)

I don't know:
how... to whistle and it bugs the hell out of me!

what... is around the corner but I'm willing to give anything and anyone a chance

why... I was 'chosen' to have MS but it's not something that defines me, it's just a part of me I have to manage

who... I would choose as my all time favourite author, there are too many to choose from

where... the walk of life is taking me but it has been an interesting journey so far

if... I could be me without my husband by my side - it's corny but he honestly makes me complete

anything... about politics so I leave that side of newspaper reporting to my colleagues that do

But I DO know this: Life is a breeze if you surround yourself with lovely people and remember to smile (a lot!)

Low blow

2011-04-16T21:37:00.001+01:00

Tonight marks the end of week four on Rebif and it has been a tough week. That's hard for me to admit because I approach everything MS related as positively as I possibly can. However even I have to admit sometimes that the clouds turn black now and again.

I'm not sure if it was the Rebif hitting me or a weekend of solid sun that did it but I woke up on Monday feeling as though a bus had hit me in my sleep. Besides feeling a 'bit low' every single ounce of me ached and walking was like wading through mud. But I have a 22 week old baby and lying down under a black cloud is simply not an option.

And you know, that's a good thing. I gave myself a talking too, got under a hot shower and got going regardless.

That all said it was the start of a week I'm glad to be putting behind me - physically, mentally and emotionally. I had a chat with my MS nurse yesterday and she said it's pretty normal to have a 'down' day now and again, even when you're well. But it's not a state of mind I'm used to.

With a body in pain it's hard to keep your mind intact too but I think the enormity of what I'm actually going through has only just hit me. This process isn't a stop-gap, it's not going to end tomorrow, it's for the rest of my life. And that's the hurdle, realising it's FOREVER.

I've always known it was but the physical act of injecting myself makes the knowing very real.

Lift off

2011-04-05T21:28:00.000+01:00

The first two weeks on Rebif are now over and the verdict is in. Started on a smaller dose than expected - just 8.8mcg every day - but the aim is still to be up at 44mcg by the start of week four.

The first day was weird because they suggest you take no painkillers at all so I could assess the side effects properly. So basically I sat around all day waiting for something to happen. Every twinge made me question my own body and it eventually transpired that the only obvious side effect was a persisent ache in my bones - like the kind you get when you have a proper flu.

So the plan from here on in is to take a few painkillers about an hour after the injection so it kicks in before the aches.

The actual injection itself isn't so bad. It does take a wee touch longer than I expected. The needle goes in and you have to hold the machine on the skin while the drug is administered before the needle is then retracted again. But it's nothing I can't get used to.

I've read some other MS patients' thoughts and there is a train of thought that you will find a site that you least prefer. Already I find myself not liking the stomach area but you have to rotate so I've been employing the help of my husband and getting on with it.

Today marks the start of week three and a huge increase up to 22mcg every injection so I'm hoping my body plays ball and the side effects don't get worse.

D-Day is fast approaching

2011-03-16T21:23:00.001Z

My appointment with the MS nurse went really well and after another look at the options available I have decided that Rebif will be my medication of choice. It's a form of interferon beta-1a and while it isn't a cure (none of the drugs available are) tests indicate that it does reduce the relapse rate by a third, and also the length of any relapse you do have by a third too. And while they aren't exactly hugely positive percentages they're a hell of a lot better than what I'm facing at the minute.

So, I've made the choice and now it's all about the doing. Rebif is injected into the skin 3 times a week and I've chosen Sundays, Tuesdays and Thursdays - that way my 'weekend' starts on Friday mornings and I won't have to inject again until Sunday evening.

And the day of my first injection is looming large ... next Tuesday (22nd March) in fact. Thankfully the MS nurse does the first one, then I go back to her again on Thursday and I inject myself with her help. Finally on the Sunday I'll be at home and it's all systems go.

The process is also made 'easier' by a very fancy looking machine that Rebif comes with. It has so many bells and whistles I couldn't even begin to list them all but it's safe to say I'm pretty impressed by it. It doesn't remove the injection (naturally!) but it does make it more palatable.

I also go through what my MS nurse called 'titration' - this is where they start me on a low dose of 11mcg for 2 weeks, then increase it to 22mcg for another 2 weeks before I am finally on the allocated 44mcg. It is hoped that this gradual approach will help my body adjust to the drug better and lessen the affect of any side effects.

Talking of side effects, they aren't awful but they aren't pleasant either. Flu-like symptoms are the most common, shivering, aches and pains, headaches etc, as well skin reactions at the injection sites. However, most patients find that these disappear over a few months and if they do continue regular painkllers like paracetamol and ibuprofen can help. They are also why I will generally be injecting at night so that I hopefully sleep though any reaction I may have.

So, all in all, it's not so bad. I am a little nervous but hopefully once I get the first week over me it'll simply become a part of my life, as normal as brushing my teeth and having a shower. Fingers crossed :)

The news is in

2011-02-25T11:38:00.001Z

I can hardly believe I'm writing this but .... the funding has been approved for my MS drugs. The news came yesterday morning and the call took me completely by surprise. When my MS nurse said hello I expected her to continue with, 'sorry to tell you this but it looks like you may have to wait a while longer for your disease modifying drugs'. Instead she said, 'Thankfully the funding issues regarding DMDs have been resolved and the good news is you're top of the list'.

I then phoned my husband and promptly burst into tears. I was simply overwhelmed. Taking these drugs is something that I've been thinking about for the best part of a year and now that it's finally here I didn't know what to think.

I'm so delighted to be given such a chance at beating MS but there's no doubt that I'm also a bit scared about the whole process. I guess if they were handing me some tablets to swallow I wouldn't think twice about it but because I will have to inject myself it seems like a much bigger deal.

But when I texted a friend to share the news she made three brilliant points.
First off she said, 'oh god, that's amazing' - and it IS amazing, I can't let myself forget that. Secondly she said, 'You've dealt with far worse' - and that just centred me immediately; made me realise that this is not the worst thing to happen to me. It is, in fact, exactly as she said next, 'an opportunity'. Finally, and most importantly, she said, 'Think how u would feel if someone rang now and said you hadn't got it. You would be gutted'.

Never have truer words been spoken because if they had denied me that chance I would be on here now giving off bucketfuls. Instead, I am announcing BRILLIANT news, news that will hopefully keep me well for longer, and there is no better news than that!

I now just have to decide which of the four options available will fit into my lifestyle the easiest so I've arranged a meeting with my MS nurse next week to talk through the various drugs and hopefully once that decision is made it will be full steam ahead.

Adult company

2011-02-22T20:56:00.000Z

Having Charlotte has certainly given my life a whole new twist, and more importantly, meaning. But, while I love her with all of my heart, I am also, strangely, looking forward to going back to work.

A newspaper office is a very stimulating environment. Yes, it's stressful constantly working to deadline, but it gets my brain going and at the minute all I seem to do is work out when Charlotte had her last bottle and sing the latest nursery rhymes!

So it's no wonder I am starting to crave a proper conversation. That said, I'm not due back until the end of July so it may be that by the time it rolls around the last thing I will want to do is leave Charlotte with someone else all day.

However, I only work a three day week - a decision I took when the fatigue side of MS was playing havoc with my work/life balance - so going back doesn't feel like it will be such a wrench.

In the meantime I try really hard to meet friends and family a couple of days a week to make sure I don't forget how to hold a conversation. And, in an effort to get some quality 'me' time squeezed in I have just booked a lovely overnight stay in a luxury hotel with my bestest friends - now there's a way to get the conversation going :)

World Book Night

2011-02-08T21:24:00.000Z

Anyone who knows me well knows I'm a massive lover of books.

My husband can't understand how I can devour one in a few days, questioning how I've understood the story or the character quirks. As a child I couldn't even go to Tesco without a book in my hand - the one mile journey was much too long without some reading material to pass the time - and I've been known to lose myself in a bookshop for hours at a time.

So, when I heard about World Book Night it was as if it was made for me to take part in. The idea is easy. They're giving away one million books on 5th March 2011 and in order to do so they requested 20,000 'givers' to give away 48 copies of one title chosen from their list of 25. In case you're wondering, I know 48 times 20,000 doesn't equal one million ... the surplus will be given to hospitals and prisons etc by the organisers themselves.

I rapidly filled the form and hoped I would be chosen. And guess what, I have been! This fills me with so much joy I can't describe it. First of all, if I won the lottery this is definitely what I would do with some of the money, giving away the gift of reading to random people in the street. Secondly, it's my first wedding anniversary and this seems like such a novel way to mark the occasion. Finally, as part of the form filling you had to give the organisers an idea of who and why you would give your 48 copies to and I mentioned that part of my quota would go to my local MS Society branch. I'm hoping that Terry, the branch organiser, will have an idea of which members would appreciate a book, maybe those stuck at home or unable to work, and let them know that they are not alone.

Because in my mind a person who reads is never on their own.

As well as giving random people in the street a few copies my family and friends will definitely be in line for a good read too but if you think you deserve one then leave a comment telling me why and I'll pick two people at random and post them out ... don't say I'm not generous :)

For the record the book I'm giving away is Half of a Yellow Sun by Chimamanda Ngozi Adichie and you can read a bit about it - to see if it floats your boat as much as it did mine - at http://www.halfofayellowsun.com/

Unconditional love

2011-01-27T21:46:00.000Z

My baby girl is currently suffering from her first cold ... and it's horrible to watch. Her eyes are streaming, her nose is all blocked up and she's generally not in good form. Worst of all there's very little I can do to help bar using saline nasal drops and giving lots of cuddles.

And the situation made me think back to a previous blog I posted on here about how I believe my diagnosis is probably harder on those who love me most - namely my husband and parents - because if I could have the cold for her I would and I'm guessing that's how they probably thought back in April 2009 when I got the news that I had MS.

That's the thing about being a parent - your perspective changes, you never come first any more, your children become your everything. And I wouldn't change it for the world.

I really hope my precious girl gets better soon, even if it's just a simple cold it's taking it's toll on her (and me!)

The waiting game

2011-01-25T19:28:00.001Z

There's always been a 13 week waiting list for DMD's in my health trust - basically the neurologist recommends you go on the drugs, your name goes on the list, you visit the MS nurse to see the needles and decide which one you like best (honestly, you couldn't make this stuff up) and then 13 weeks from the process started you get to try them out.

Now, when my neurologist placed me on the list last January (2010) he also pre-faced his advice with the line, 'You have to be off the drugs for at least three months before you even consider trying to conceive, because we have no way of knowing the impact they may have on an unborn baby, so if you want a family you may want to consider having it now.'

I subsequently went to see the needles and decided I'd rather go through labour first! Well, sort of. In truth, J and I were ready to have a family so we decided to try for a baby while I was waiting the 13 weeks - and lo and behold we now have Charlotte, our first baby.

Following her arrival I gave myself a few weeks to get my head around being a mum and then phoned my MS nurse to get me back on that list. She told me that just 12 months after first being placed on the list things have changed. Now, every case is judged individually by the powers that be (ie. the men/women that hold control the money) so I'm now waiting patiently to see if they allow me the opportunity to at least try and stop this illness in its tracks.

It's taken me some weeks to write this post because every time I mentioned it before now I've gotten so frustrated I've cried. Put simply it annoys me beyond words to know that someone who I've never met before holds my destiny in their hands. It also winds me up that because I choose to have a family first the rules have since changed.

I wouldn't change my choices if I could do it all again - because then I wouldn't have Charlotte - but there's no denying I feel let down by 'the system'.

No one else lives my life, so why should someone else have the right to deny me a way to make it better.

I live in hope

2011-01-23T20:48:00.000Z

At last... I've managed to grab some time to blog for the first time in 2011. Of course, I'm still using Charlotte as my excuse (having a newborn in the house does not leave time for much else besides looking after her, cleaning and cooking dinner!) but it's my self-imposed resolution to get writing on here more often this year.

The reasons being ... Firstly, maternity leave takes me away from my daily job of working with words and I would like to think that writing on here keeps my brain active at least a little bit - and secondly, my initial hopes of this blog was to both keep a record for myself of how my life is with MS and also to *maybe* help others with MS to read a mainly positive aspect of living with the condition.

So, off we go again....

And as the first post of a new year it is wonderful to report on some good news as it would be remiss of me not to mention the fabulous news this week that the European regulators have given preliminary approval for a drug in pill form, called Gileyna, which in trials was proven to cut relapse rates for MS patients and slow the disease’s progression. (you can read more about it here ... http://goo.gl/fb/gYsfU)

This is particularly heartening for me as I have just recently placed myself on the waiting list (which by the way is an entirely different blog post I will be having in the not to distant future) for the injectable disease modifying drugs (DMD's).

Hopefully the NHS will see that these pills are worth their money and I will not have to inject myself for too long before they are given the green light. I live in hope.

Because she brightens up my day ...

2010-12-17T17:56:00.001Z

... I hope she brings a smile to your face :)

Just in case

2010-12-17T17:43:00.000Z

The last few weeks have been beyond manic - but I believe I can be excused for my lack of updating the blog given that I have a 5 week old at home! Charlotte has quite simply taken over - in the nicest possible way.

MS wise this last few days have not been easy. My feet are playing up again and the pain in my right foot is not unbearable but it isn't pleasant either. That said, I am delighted to report that I have not yet had a relapse following Charlotte's arrival. It's well documented that your chances of a relapse following pregnancy are increased so I feel incredibly lucky to be generally quite well.

However, I have placed myself back on the active waiting list for disease modifying drugs. I am not sure if taking such toxic medicine is the road I wish to pursue just yet but I do believe in keeping my options open. Therefore, given that there's a 13 week wait for the medication, it makes sense that I am on there 'just in case'.

It's a decision I will need to take after some serious soul searching and I'm hoping that it will suddenly become clear in the coming weeks. In the meanime, I am looking forward to spending Christmas with my family - especially my new daughter!

Presenting Charlotte Beth ...

2010-11-22T09:53:00.001Z

She's here ... our precious girl - Charlotte Beth - was welcomed into the world on 11th November at 4.31pm weighing in at 7lbs 12oz and she is honestly the best decision I have ever made!
Already our house is filled with an inordinate amount of pink and it finally feels like the family home we so hoped it would be.
And I know I'm naturally biased but she is simply perfect!! At the minute she's curled up sleeping in her moses basket while her daddy cleans the house and I have ten minutes out to myself on here.
If I ever had one ounce of doubt that becoming a mum was perhaps not the right move it has been banished without a second thought because I promise that it is THE most amazing feeling and privilege I have ever had the benefit of having.
Yes she is hard work, like all newborns, but I would go without every lost second of sleep all over again in an instant.
So, to anyone with MS who wonders if having a child is possible, my resounding response is most definitely yes. And I know everyone's circumstances are different and that I myself may have moments in the future when it seems an impossible task but when Charlotte looks at me with wide eyed wonderment every time she wakes it is no exaggeration to say that she makes my life complete - and I wouldn't exchange that feeling for anything in the world.

The uncertain path ahead

2010-10-27T15:44:00.000+01:00

Here's the thing. When I started this blog I promised myself that it would document all aspects of life with MS - the good, the bad and the ugly. But as I wish for it to remain a positive account it is sometimes easier to ignore the bad and ugly sides.
However, in recent weeks I have found it difficult to sidestep the issue of uncertainty and that's why I've been away for a while. I genuinely feel that voicing my concerns here will have a negative impact on my thought process but in the interests of keeping it real - here goes.
Of course, the impending arrival of my first born - expected in just over 2 weeks - has me very excited and I've never questioned our decision to have a child - both J an I are going to be great parents (if I do say so myself) - and will strive to give our child(ren) all the love and support they will ever need.
BUT, and here's where the uncertain aspect of MS rears its ugly head, it does worry me that having a child has been a somewhat selfish decision. Yes, we will be great parents and as John Lennon once said, 'Love is all you need' but is it fair for me to sentence our unborn baby to a life with a 'sick' mummy.
It's so frustrating because as I, and all MS patients, know, there is no crystal ball for what lies ahead. I may never deteriorate further and if being this 'sick' is all I have to face then I would be a very happy woman. But there simply is no knowing.
I hate that I go to sleep some evenings and worry about what sort of state my own body will have left me in by morning. I've read the experiences of other MS patients and know that there's a possibility I could, for example, suddenly wake up with impaired or no vision. And there's no point in pretending that that thought doesn't scare the absolute c**p out of me.
I also hate it that MS isn't something I can work at getting rid of. It's there, inside me, working whatever damage it feels like doing - and no amount of positive thinking can make it stop.
In essence, it's an uncertain road and I'm at its mercy.
Yet, I will finish on a positive note - I can't bear not to! For all of its faults and the uncertain future it represents, MS has not taken away any part of my personality - and I am determined that my child will grow up with a confident, happy and positive mum by its side - you just watch!

It'll all be worth it in the end!

2010-10-07T14:32:00.000+01:00

Okay, so I've just over five weeks to go and I'm already hoping that I defy the myth of first time mums going late and have this baby early. Not massively early because I, of course, want it to be a good weight - lovely and healthy. But honestly, carrying a baby is hard work.
This week has felt especially hard because the wee mite is doing what it's supposed to and moved head down into my pelvis ready for labour. So, once again, while I'm all chuffed that it's behaving itself and doing as nature intended, it is really starting to hurt.
I have tiny feet pushing up under my ribs at the right, two little fists punching my left side and a head pressing on my bladder - usually all at the same time!
Work today has dragged as I cannot find a single way to get comfortable, and I'm also conscious that this time next week I'll be finishing up - and I'm counting down the hours in anticipation.
Thankfully I held onto some of my holidays so I'm only at my desk for 5 hours next Monday and all of next Thursday, so it should fly by. Then I simply intend to hibernate at home and start nesting - ready for the much-anticipated arrival of our precious bundle of joy.
And once it gets here I'm sure all the aches and pains of recent weeks will simply fade into the background ... and the sleep deprivation will take over instead!!!

8 weeks and counting ...

2010-09-20T21:20:00.000+01:00

The birth of the baby is fast approaching - just 8 weeks to go!! - so we have brought the pram home (I swear it needs two months to get used to all the buttons and gadgets!) and I am eagerly awaiting the arrival of our nursery furniture.

I cannot wait to get all the little white and 'neutral' clothes washed, ironed and hung up in the cute wardrobe we've ordered. But before all of that I really need to think about getting my 'bag' packed. My mum is convinced I'll never go to full-term (I'm not THAT big, honest) - but it's better to be safe rather than sorry, especially as I could never trust J, as brilliant as he is, to pack all the right stuff under pressure! I can just see myself mid-contraction screaming, 'No, not that pair, I need my fancy slippers!'

Aside from all the excitement this baby-growing lark is hard work. I've been getting really tired lately, which everyone warned me would hit around this time, and I find myself wanting to sleep in the middle of the day. But it's also a time when the baby's movements are really pronounced - I get kicks all day and find little body parts digging up under my ribs at night - which is the most unbelievable (and sometimes uncomfortable!!) feeling in the world.

Overall though I've enjoyed being pregnant. It's such a miracle, to grow another human being - the magnitude of which I have never fully appreciated before now. To think a little person, half me and half J, is almost here is an overwhelming thought. And I am sure it will be a life changing experience like no other.

Finally ... flat shoes I love!

2010-09-06T14:01:00.000+01:00

In my constant quest to find a pair of gorgeous flat shoes that are both comfy and on trend - rather than sore to wear and plain black - I spent a glorious half hour in Dune at the weekend trying on every pair they had. Eventually they came up with these ... the most beautiful pair of flat shoes I have ever had the priviliege of owning.

They also had several other pairs of flats, including winter boots, that I now covet greatly. Roll on for the next pay day when I might just treat myself again.

As an aside they also had a very beautiful bag in store that was screaming to be bought - and big enough for me to justify buying as a crossover changing bag for when the baby arrives - but it was priced at £135 (!!!!) and in fact not justifable at all in the current climate of saving for baby so if anyone would like to treat me it looks like this and comes in three colours - I'll take any one you like :)

Smiling through the pain

2010-09-03T16:36:00.000+01:00

Sometimes I'm so intent at proving to people that I'm doing ok that I forget to look after myself. And so it was that this week my right foot decided it had had enough. So much so in fact that I had to take Wednesday off work and basically sit doing nothing.

Thankfully that day's rest seems to have done its job and while the foot isn't 100% it's certainly not as painful as it was. The burning sensation comes and goes and while walking on it can feel a bit like walking across a bed of pins it's not unbearable.

As an aside work was manic yesterday and at one point my deputy editor came over looking decidedly stressed out ... we mutally complained a bit, getting the troubles of the day off our chests and as she went to leave she commented ... 'and yet, here you are still with a smile on your face' - that's me, always smiling :)

New audience

2010-09-01T07:53:00.001+01:00

A colleague of mine posted a link to this blog on her blog (www.claireallan.com) - which is infinitely more successful and widely read than mine but she's an fabulous author so that figures! - but I digress - the point is that more readers have come this way as a result.

And, as it's always been my aim for this column to educate and inform, it's great that it's starting to reach a wider audience. So, if you're new here - welcome!

It's also attracted the attention of a young woman who I met many moons ago through what the people in these parts call 'cross-community projects' - ie. they made Protestant and Catholic kids socialise and learn from each other thinking we all hated each other - they couldn't have more wrong by the way but it was a free weekend away and me and my mates where there in seconds.

So we've kept in contact via Facebook over the years and yesterday the mentioned young lady sent me an e-mail, following reading my thoughts on here, asking if I would like to recommend an MS charity that would benefit from a Christmas Day swim she and her mates are doing later this year.

The gesture has really touched me - to the point that when I tell people of her intentions my eyes well up with tears. And even though I'll have a newborn at home over December I'll still be championing her efforts and raising a few ££ for the cause - after all, if she can don a swimsuit in the middle of winter and brave the Atlantic when most people will be opening presents and drinking an early glass of wine then the least I can do is contribute to the fundraising.

I'll be on here reminding you of it nearer the time so keep collecting your pennies in the meantime - it doesn't take long for the pounds to add up!

What I miss the most

2010-08-26T15:11:00.000+01:00

I’ve just spent a lovely week off work recharging the batteries and I cannot underestimate the power of sitting still in making me feel better.
We stayed for three nights in a cottage with no television and being forced to simply curl up and read was pure bliss.
I’ve gone back to work raring to go and it’s proof that everyone - not just MS sufferers may I add - always benefit from some rest time.

Anyway ... as an aside, I’ve also been thinking about the things I miss most since diagnosis. It’s silly but it’s the small things that I miss the most.

Firstly, I’ve been saying lately that there has to be some sort of injustice in giving a sun worshipper MS because now if I spend just half an hour under the sun I’m completely zonked. And I miss the sun!

I was also at a wedding recently and besides the fact that being pregnant has me confined to flat shoes anyway, the residual pain and general annoyance that are my feet these days keeps me out of high heels - and I miss wearing high heels. I do anyway but I generally only last about two hours before they become unbearable. And when we moved house recently it pained me greatly to have to place my gorgeous pairs into a box that I know will stay closed for a good part of the foreseeable future.
I’ve also had a hard time finding flat shoes that I like and with autumn around the corner I’m dreading looking for boots I can actually feel good in.

Finally, and probably most importantly, I miss my independence. More specifically it frustrates the hell out of me that I need to rely on family (mainly my mum, aunt and J) to help me with household chores.
It may seem like heaven for someone to come in and do all the horrible house stuff for you (and mostly it is!) but sometimes when I’m laid up with painful feet all I want to do is fill the mop bucket up and wash my own floors myself.

When I can see a job that needs done, and know it would have taken me ten minutes a year ago, there are no words to describe the sense of helplessness that comes over me when I realise that not only would it take me an hour if I dared to tackle it myself now, the simple reality is that I just can’t do it at all. Such a task would leave me knackered for the rest of the day and saving my energy is something I’ve learned to prioritise.

But, this week I’m simply enjoying feeling brighter and with the baby due in just over 11 weeks, making the most of the quiet for now!

The new abode

2010-08-02T16:02:00.000+01:00

The big house move is now complete and it’s amazing. We’re out in the country in our own wee patch of paradise and I swear the new atmosphere is a tonic for my mood.

Every day I race home from work – inside the speed limit of course – and an impulsive smile crosses my face as I pull into our drive – especially if my husband is there before me! It’s a whole new era for us as a couple and a complete lifestyle change too. And I never thought a house could become a home so quickly.

We have all our photos up, the painter is in giving the rooms a fresh lick of paint and we’ve had a constant stream of guests up to see us settled. I love having my family and friends around me and the new house is simply made for entertaining.

That said, I have this tendency to go at a project full pelt and not stop until everything is exactly how I want it but that was the old me, pre-MS, and the new me, with-MS, needs to slow down – mainly because my feet are feeling the pinch. But I’m learning more about my limitations every day and forcing myself to curl up in our new conservatory looking out across the hills isn’t exactly a hardship!

Time for celebration

2010-07-16T11:45:00.000+01:00

This wonderful city in which I have the huge privilege of calling home has been named as the first ever UK City of Culture - and it's a title I feel we, as locals, richly deserve. Derry is steeped in culture - artists, writers, actors, singers, poets are in abundance - and with our past history seemingly overshadowing everything that is good about us lifting this title is a momentous day in which we can now move forward with a renewed sense of hope and expectation.

If you're still doubting our greatness then this fantastic video showcasing the city will surely make up your mind - and maybe encourage you to come and visit - if not in 2013 then sometime in the future. I guarantee you will be taken aback by the welcome and generosity of everyone who lives here.

Pregnancy and MS

2010-07-13T16:47:00.000+01:00

Everyone has this perception that during pregnancy MS symptoms disappear. It was my hope that that would be the case but it hasn’t been my experience so far.

For starters, the second I found out I was expecting I had to come straight off my bladder regulating drugs – and it wasn’t something I relished. For a start, they had given me back some semblance of a normal life and I wasn’t delighted at the thought of giving that up – but, the baby comes first and there was no doubting that I had to stop taking them.

So, with the drugs out of my system and the baby playing havoc with my bladder as in most normal pregnancies it was no surprise to find myself frequenting the bathroom more often. For me, going during the day wasn’t the issue, it was losing so much sleep at night. There have been nights when I’ve been up 4-5 times and it has to be said that the lack of uninterrupted sleep definitely contributed to the meltdown I talked about last month. But, that said, I keep thinking it’s nature’s way of letting me know that a full night’s sleep is going to be the exception rather than the norm in the not too distant future!

Aside from the bladder issues my feet haven’t gotten any better either. There is still some residual numbness coupled with a burning sensation and intermittent pins and needles – which I recognise is leftover from my relapse last December – but which I hoped would disappear in some miracle pregnancy side effect. But it was wishful thinking.

However, in recent weeks there is no doubt that I have been feeling better - I have much more energy and there have been nights when I haven’t had to get up at all to go to the bathroom – so it looks as though I’m entering the phase everyone talks about. It’s only taken me 22 weeks to get here!

PS. I’m not one to bore people with baby scan pics but these ones are just too cute not to post – the top one shows our baby face on, it’s blowing bubbles in the second one and in the third it’s showing off its dexterity, holding its feet with its hands! Cannot quite believe we’re going to be parents soon - cannot wait!

Coming out the other side

2010-06-29T14:23:00.001+01:00

Two Fridays ago I had what can only be described as a meltdown.

Maybe it was the un-inspiring consultant appointment that did it, or perhaps the simple fact that I was trying to squeeze too much in (again) but basically I fell into a black hole for a few hours and it wasn’t pleasant.

It all came off the back of a pretty intense week at work when the entire city was waiting on the historical release of the Saville Report which investigated the tragic events of Bloody Sunday in Derry some 38 years ago. When it happened, it was an emotional day, and we were all flat out trying to get all angles covered for a special edition of the paper.

As a part-timer I flipped my hours and did a late evening shift rather than start first thing and work flat-out for 13 hours straight like the rest of my colleagues - a move I thought wouldn’t impact on my fatigue levels too much - how wrong can you be!

That late finish, followed by an early start and then another long day when I barely lifted my head, finally hit me - hard. I woke on Friday morning completely zonked out, with not an ounce of energy left in reserve. And, blame it on the pregnancy hormones, but I just crumpled.

And I cried. Not just a few tears but a breath-taking sob-fest that ended with me hurled into my husbands arms blubbing about the injustice of having MS.

And I hated myself for doing it. There is no good that can come from self-pity, it just makes you feel worse than you did before. But, in my defence, once I was done crying, I was done crying. So, while I was berating myself for being so self-indulgent at the time, in retrospect I recognise that these moments are part and parcel of living with MS.

It’s not an easy illness to have. It’s a chronic one. And as such I’m not supposed to, or expected to be, happy-go-lucky all the time. That realisation is one I’m glad to have finally hit upon because pretending to be something you’re not all the time isn’t healthy either.

To drug or not to drug

2010-06-21T16:31:00.000+01:00

It was back to the hospital last week for an appontment with my MS specialist. Technically though he might as well not even have bothered seeing me.

Firstly, I mostly spoke to the MS nurse. She is fantastic and asked me lots of questions that I gave honest answers to. And to her credit, she made lots of notes as I spoke. In short, I told her that since my relapse at Christmas I have been relatively well. There is some residual pain left in my feet, and that varies from hour to hour, never mind day to day, but generally I’ve been ‘grand’ - as we say here in Derry!

J and I also got the chance to ask her about the drugs again, and express our wish that I remain on the waiting list while pregnant. There is currently a three month waiting list for drugs so I want to be right at the top of that list as soon as I choose to start the treatment.

That’s something else we will have to talk frankly about. I’m not sure I want to give birth and start injecting myself with drugs straight away when I have no idea what sort of reaction they will have on me. Ideally, I will give myself a few months to settle into a routine, get myself acquainted with being a mum (eek!) and then think about moving forward with treatment.

There is also a very real chance that I have a relapse straight after the birth. This is not true for every mother with MS but I have been told very succintly that there is a higher risk. So, it’s very much a wait and see process.

Additionally, I have an ideal senario in my head in that we will add to our family quite soon after our first baby arrives. I’m not talking a few months later but maybe ten or twelve months later - my idea being that we ‘get it over and done with’ - which sounds very clinical but I’ve always been a practical type and I figure that once you get into the way of changing nappies and making up bottles you might as well keep going!

Anyway, the crux of the conversation is that both the nurse, and the specialist (once he deemed me important enough to talk to) say that I should really give myself at least twelve months on the DMD’s for them to have any worthwhile effect so it’s looking as though we have another choice ahead.

The first option is to have baby one, stay off the drugs and take what’s coming on the chin (which may of course be absolutely nothing) and then proceed to have baby two pretty soon - as I outlined above.

Option two is to have baby one, give myself a few months breather, take the drugs for at least a year, giving them a chance to have some impact, then come off them for the required three months before we try and conceive baby two.

At the minute I’m concentrating on staying as well as I can throughout my pregnancy and with my husband being the ever constant voice of wisdom in my life, he has made a very sensible suggestion that we have baby one and then make a more informed decision once it’s here safe and sound - he’s never been one for looking too far ahead and at this juncture I think his wait and see approach is one I’m going to take.

Before I sign off, I should go back to the specialist - he really was with me for all of 2 minutes and my husband and I both felt that his demeanour gave us the impression that each of his seconds was very precious and could we please just hurry up and let him get back to his job.

I understand that the NHS is at breaking point, and that he probably did have a massive case load to get through that day, but I am a human being, not a number. It would be nice if he could remember that sometimes.

Baby, baby

2010-06-09T12:04:00.001+01:00

Way back in January I blogged about the dilemma my husband and I faced as regards having a family - the crux of the matter was, I either went on the MS drugs or we started to have a family. At the time it seemed like a huge decision - on one hand I wanted to focus on getting myself better while on the other I knew we both wanted children.

Well, I’m pleased to report that the decision has well and truly been made .... I’m 17 weeks pregnant and it’s all going great!

I have suffered horribly from tiredness and morning sickness (that lasted all day!) but in the last two weeks that has started to get easier - now we’re just really excited about welcoming our baby to the world in November.

We always said that 2010 was going to be our year - and with our wedding and a baby on the way already it’s certainly looking as though that’s going to be the case.

It's not always about me

2010-06-03T13:54:00.000+01:00

Getting frustrated about things I cannot change is something I usually don’t indulge in. I’ve always had the attitude that what’s done is done so you’re better to face it head on than stress about the stuff you can’t fix.
My approach to my MS diagnosis has pretty much followed this path and it has stood me in good stead so far.

However, there is one aspect about having MS that frustrates greatly - and it’s something I will never be able to change. And that’s the impact my illness has on those around me.
This hit me hardest when first diagnosed. While I was striding forward, convincing everyone in my wake that this really wasn’t the worst thing to happen, I watched my husband and parents struggle to come to terms with it all.

Looking at things from their perspective I would probably be the same. After all, when someone you love is hurt, whether that be a cut on the knee or a life changing diagnosis, you want to kiss it better.
But they must look at me and I think, ‘What can I do to help?’.
In truth, despite not having a magic wand to make me better overnight, they have helped massively, in all sorts of ways.

My mum helps with practical stuff like the ironing and she has this unbelievable gift of coming into my home like a whirlwind and somehow leaving 60 minutes later with a clean house left in her wake - genius!

My dad just keeps the jokes coming ... and then, every so often, we have a heart to heart where I get to off-load lots of stuff I’ve been thinking and/or feeling and I feel miles better.

And then there’s my darling husband who worries like mad and takes the brunt of any mad mood I may indulge in. He has held me tight while I’ve sobbed (which I might add happens so rarely I think he’s sort of glad I’m actually having a cry so I’m not trying to be superwoman all the time!) and told me very patiently that no matter what the road ahead brings, we will face it together.

Every penny counts

2010-05-07T12:41:00.000+01:00

It's May, the sun should be shining and spring should be in the air. Not so. Instead it's pretending to be sunny with a hint of blue peeking through the clouds and it's absolutely freezing! I know all about it because I spent two hours this morning shaking my collection thingy outside the local shopping centre, trying to raise a few pennies for the local MS Society branch, and mum and I realised too late that we should really have been wearing gloves.

But it went ok. We stood together, having a giggle at the characters that grace Derry streets first thing on a Friday morning, and our boxes were considerably heavy when we finished up so hopefully we've done ok. I have to say though, never again will I walk past a collector. Even if it's just a few pennies, it all adds up and it makes you feel like less of a beggar when people stop for a few seconds.

There's also a considerable feel-good factor to be had from doing your bit for charity. It doesn't take much and it warms the heart to be helping out. And those two hours went much quicker than I had imagined they would so for as long as I'm fit to help out, I will be!

Raising awareness

2010-05-03T15:31:00.000+01:00

I'm a journalist by trade so it probably comes as no surprise that I've documented some of what I've faced over the last year or so in the publication for which I write ... And in the absence of a new, more fulfilling post ... here it is!

The day my life turned upside down
It’s a startling statistic but Multiple Sclerosis (MS) affects around 100,000 people in the UK. And I happen to be one of them. Diagnosed last April, it felt at the time as though my world had been turned upside down. Although I had been feeling under the weather, I put the tiredness, headaches and sporadic collapses down to a hectic lifestyle and burning the candle at both ends.

Looking back I wonder how I ever believed that could be the case but I have a tendency to stick my head in the sand sometimes. Considering this time it concerned my health, ignoring the problem was not the way forward. In the time since, I have read up on the symptoms, treatments and information available both at the local MS Society Foyle branch, and on-line. Now I am a walking encyclopedia when it comes to MS.

This week is MS Awareness Week. It aims to educate people on the impact the condition has on patients and also to raise a few pound for the MS Society charity. As such, I have spent the last week home baking a stack of cakes for consumption at a ‘Cake Break’ at work, all in the hope that I manage to raise a decent amount for the charity.

They have been absolutely brilliant over the last twelve months. Locally, the Foyle representative, Terry McNamee, has been a fantastic source of knowledge and support, and some of the money the branch raises goes towards funding a local MS nurse who is quite simply, brilliant and nationally I have made use of the concise information available from the extremely well put together charity website - www.mssociety.org.uk.

And now I’m also writing this ... in a bid to get across the education side of things for those readers not familiar with what MS is and what it means for people like me. I don’t aim to be an expert, and the crux of it is that when it comes to people with MS, nobody is the same. Like many people, the first thing I thought when I heard MS was, ‘I’m going to end up in a wheelchair’. Yes, that can be the case for some people but I’ve been finding that it’s more of an exception rather than the rule.

If anything, having MS is a silent sort of condition. Well, that’s been my experience anyway. If I had a pound for every person who said, “You’re looking fantastic”, I would be a millionaire. While their sentiments are lovely, and certainly not to be scoffed at, if truth be told it can sometimes be a tad frustrating. It may be the case that I’m actually having a bad day, feeling excessively tired, suffering from pins and needles in my feet and/or running to the bathroom every ten minutes.

I’ve felt a few people stare when I’ve parked in a disabled bay, with my badge there for everyone to see, and watched me walk away with nothing seemingly the matter with me. Yet it is often the case that that trip to the shops may just have taken all of my energy to get there. Being able to park closer to the place I’m going to means I’m able to be independent, and when my feet are particularly painful, that can be the difference between an isolated week at home or a chance to get out for half an hour.

For the majority of the time however everyone has been fantastically supportive. My family and friends are my backbone and my work colleagues couldn’t be more understanding. That level of support cannot be underestimated. My approach is also very positive. I live every day as it comes and try not to worry about what’s around the corner because MS is unpredictable in its nature. I’ve also got a new perspective in life - I worry less about the little things and appreciate what I have more - and that can only be a good thing.

While the last twelve months haven’t always been easy, I’m pleased to say that the good times have definitely outweighed the bad. Last month I married my soul mate in a very moving and emotional wedding service and we are looking forward to a long and happy married life together. Before my diagnosis we had a whole host of plans for our life together and, to be honest, they’re still in place - we’ve just tweaked them slightly!

On this day

2010-04-20T12:35:00.000+01:00

At the request of my lovely Uncle Tom I'm resuming blog posts with a bit more regularity from here on in .... promise. To start back however I need to go back a bit because I've missed so much out!

Of course, first on the list was our absolutely amazing wedding day. Friday 5th March, 2010 will forever reign high on the list of days I would most love to have all over again. It was, quite simply, amazing.

The day started early as the florist was due at 7.30am, and I rushed straight off the hairdressers for two whole hours of preening. But I was completely calm, not at all nervous and just really excited at the prospect of being J's wife. The morning flew, our house was chaos, but in a good way, and I actually managed to be at the church with ten minutes to spare .... fulfilling a promise I had made to J that would NOT be late ;)

Our service was just beautiful and I only wobbled a little bit at the 'In sickness and in health' part of the vows - obviously those words hold so much more weight now than they would have done twelve months previous - but J gave me a little look, one that only I know translates into a nod that encourages me to be brave, and I was fine. He has been my rock up to now and it's the most wonderful feeling to know I have married my soul mate - someone who I know will support and encourage me no matter what life throws at us.

But enough of the soppy stuff .... the rest of our day went off without a hitch. It was amazing to have everyone we love with us for such an important part of our lives together and it all went so well, making the months of preparation very much worth the saving and compromises along the way.

Yes, my feet didn't hold out too well and I found myself ditching the beautiful white wedding shoes for a battered pair of black pumps once the dancing really kicked off, but I wouldn't have changed it for a minute. You know, to be dancing at all was just fantastic. I maybe should have planned ahead and bought a nice white pair to set the tone but the fact that I didn't sort of sums the day up ... laid back and comfortable!

Time's up

2010-03-02T13:04:00.000Z

So, it's almost here ... and I've been so busy I've neglected my updates slightly ... I promise I'll be back when the honeymoon is over :) Until then, keep everything crossed that my feet stay well ...

All systems go

2010-02-24T10:12:00.000Z

It's celebration time today ...
The feet feel great (touch wood!) and with nine days to go until the big day that's a massive deal.

Now all we have to cope with is this blasted weather.
Can I ask nicely that the snow clear up PLEASE.

And in case you didn't know, I'm getting married next week!!
Yes, I know, you haven't heard that yet ....

A weekend to remember

2010-02-17T10:40:00.000Z

So, it has been a few days, but wedding details have taken over! Anyways, the hen do was, as I said before, unbelievably amazing. I think my chief bridesmaid should start giving classes on how to be a brilliant bridesmaid - I know I'll be taking tips from her if I ever get the role.

She organised a night on the West End, including a scrummy meal, Dirty Dancing live on stage and our names on the guest list of a cool club that also played cheesy music and was therefore perfect for boogie-ing on down til the wee hours. We continued the party back at the hotel with a sneaky bottle of rose and an even bigger bottle of vodka - oops!

Next day was pretty much wrote off for most of us as the hangovers started to set in but I was whisked off all the same to a very sumptuous hotel - you know, the type you would want to live in if you had the money, filled with blooming flowers, Laura Ashley style interiors and plush bathrooms - in short, beautiful.
It was here that I was treated to a champagne afternoon tea, complete with small triangular sandwiches, cup cakes, strawberries and cream and fresh, still hot, scones. The girls then raised their glasses and gave me a short toast which brought tears to my eyes and I know I've said this before, but I felt very loved.
Every one of them has been completely supportive over the past year, beyond my wildest dreams and I could never have gotten through all that MS has thrown at me without them.
The toast was a reminder that no matter what life throws at us, having friends who care is priceless.

Next on the agenda was pizza and more bubbles in our room but they weren't letting me off so lightly. They had requested I wear a pink dress and I had duly done so, while the rest of them were wearing black dresses with a hint of pink on their attire - lovely touch I thought, not too tacky, just nice. Boy was I in for a shock when 'chief' produced a bright pink feather boa, long black gloves, a 'bride-to-be' sash, 'L' plates, a mask adorned with even more pink feathers and the icing on the cake, a headband complete with pink willies! But I took it all in good humour - nothing else for it really!

They then started a round of Mr and Mrs - with a twist. They asked me questions and once I had answered they produced a lap-top with J giving his answers on a video camera. The amount of effort they had gone to was unbelievable. Thankfully we didn’t do too badly – proof that we are really made for each other J

A comedy club followed, where I hid at the back and hoped the comedians wouldn’t pick on me, and then another reserved area in the club. Again we danced til our feet hurt and I went home with a huge smile on my face.

I had braved my high heels on night one but gave them up for comfort on night two – a wise choice as my feet survived quite well! Now back home, it’s just over two weeks until the ‘big day’ – how that came around so quick I’ll never know – and I’m trying to pace myself. My feet were a bit sore on Monday but that’s because I didn’t stop all weekend, and I’ve learned a sore and sorry lesson. This weekend you’ll find me laid up watching films and taking it easy!

I blame 'brain fog'

2010-02-10T13:52:00.000Z

The big hen do extravaganza - as my chief bridesmaid called it - is now officially over. Technically it was over on Sunday but with all the reminiscing and chat it sort of only feels as though it ended today!
It was one hell of a weekend - completely amazing and totally unforgettable - but not without its traumas either.

To start with, I left my handbag on the plane - with my phone and purse safely tucked away inside it. And while I said I wasn't going to mention MS through the preparations and wedding itself, I feel I sort have to here.
Reason being, I think MS is to blame! Honestly, there's a thing out there that MS people call 'brain fog' and I completely 100% believe that it is 'brain fog' that has me forgetting stuff and leaving things behind me.

Once I discovered the loss I missed a heart beat, followed by a mad dash to an airport telephone where a lady on the end said she could do nothing to help me - typical. The woman at the easyjet desk was even less helpful, with her aggressive 'arms across the chest' stance and withering look.
So, once I realised there was nothing I could do, I accepted my fate and rounded up the rest of the posse to catch the train.

A year ago this sort of fiasco would have had me reduced to a blubbering mess, frustrated at my inability to look after myself. This year, I have a new approach. I couldn't fix it and the withering lady wouldn't help, so I got on with it, not a tear to be seen. My late grandmother used to say, 'Don't cry over what money can buy' - and never before have I taken her advice so literally.

The weekend was just about to start .... and those stories will be posted later, promise.

Off to London town

2010-02-04T21:37:00.000Z

Tomorrow is day one of my hen weekend .... and I can't wait. As I've said before, I have an amazing crowd of friends who are brilliant every day but I know they're pushing the boat out for me this weekend and that means SO much.

There's 19 of us in total hitting London town - I know little about what's happening because my bridesmaids (and my chief in particular - she knows who she is!) have kept it all under wraps which makes it all the more special!!

They've also taken the 'stupid feet' into consideration so hopefully I'll be able to enjoy everything without much problem. To be honest I'm going to try and completely forget about MS for a while - not just this weekend but for the next two months, through my wedding day and honeymoon - and hope that it doesn't make me remember.

Wish me luck :)

Keeping fit ... and rest too!

2010-01-30T15:27:00.000Z

So, aside from everything MS related, my life is pretty hectic at the minute. Our wedding is less than five weeks away and while the majority of the organising is finished, there's still 'stuff' to be done!

As I write my intended is partying in Barcelona with a bevvy of his mates and I'm taking the chance to catch up on some rest and take it easy. It's no surprise to find that I'm holed up at my parents ... no better place to chill out.

But on a serious note, rest is something I have to take seriously. Fatigue is a symptom of MS that raises its head when you least expect, or need, it. With my own hen weekend starting on Friday and the honeymoon just over six weeks away I want to be in the best possible shape so that I can enjoy everything wedding related - and the big day itself of course :)

Thankfully, my feet are almost back to 100%. I have no difficulty walking at the minute and aside from some sensitivity they're behaving okay. I'm also going part-time at work on Monday which will be a real help in keeping any tiredness at bay.

I've also started working out at a gym. My instructor has helped devise a plan that allows me to keep off my feet for the majority of my 40 minute workout and I'm actually really enjoying the process. It's true that keeping fit is something everybody needs to consider in order to keep healthy but with MS playing a role in my life now, it's something I've decided to prioritise. After all, if I look after my body the best I can when it's well, there's a chance that I'll be better placed to keep on top of the MS in the long-term too.

Not so scary MS guy

2010-01-25T20:37:00.000Z

So, today was the all-important MS specialist appointment. I was a bit anxious this morning, couldn't really eat (that'll help the diet!), felt on edge etc etc. For some unknown reason I had Mr MS guy boxed away in the scary corner, someone to be feared - but I shouldn't have worried. Yes, he was to-the-point and precise but his straightforward approach was exactly what I wanted - no bullsh**!

Again, there wasn't much more to add to what we already knew. But before we start looking at the drug options I have to have a lumbar puncture done - that's that horrible procedure where they stick a needle into my spinal cord and remove some fluid. That fluid will hold the definite, definite information they need to allow me to go a waiting list for the medication.

It's not something I'm looking forward to, but I understand the need too. Basically the drugs cost money - and whether we like it or not, money makes the world go round - so before they start anyone on them they have to be double sure that there's a need. Thankfully the puncture won't be done until after the wedding - which is now just over five weeks away - eek!

On that note, some of my family and friends took me out for dinner at the weekend, sort of a pre-hen hen do! Was great fun and I wore heels for the first time in twelve weeks - and while my feet burned just a tad, they were bearable - proof that the 'stupid feet' are getting better. Made me nice and tall again too - I've missed height :)

Positive thinking is key

2010-01-21T13:59:00.000Z

In a previous post I mentioned that my attitude during all of my investigations, consequent diagnosis and every day thereafter, has been generally very positive. That's just my way.

From day one, I have never wanted the sympathy or the pity looks, but most importantly, I fully believe that your attitude can have a massive impact on how you certain situations affect your life. It would have been the easy option to feel sorry for myself, put my head in the sand and talk to no-one. Instead, I did the very opposite.

Everyone who knows me, knows I have MS. I find it helps to be open about it, then there's no lies to tell when I'm off to the hospital to see the consultant, there's no pretending to be OK when the pain is excruciating, and most importantly, my family and friends know where I'm coming from.

To say they have been supportive over the last ten months is an understatement. Some just let me rant, allowing me to get whatever it is off my chest, others listen patiently while I try desperately to explain what it is I feel on any particular day, and then there are those who allow me a weak moment, a few tears at the seeming injustice of it all.

But all of them boost me up, allow me to be me, regardless of the MS, and for that I am extremely lucky.

The fork in the road

2010-01-17T10:07:00.000Z

So, I had my appointment with the neurologist on Wednesday and he didn''t really tell me anything I didn't already know. That can sometimes be the problem with being well-informed. The internet is such a wealth of information that I've almost diagnosed myself before I get there. BUT, that said, it does help to go with some idea of what the professionals are going to say - it means nothing is too much of a shock.

Anyway, he confirmed that the sensory problems in my feet were officially a relapse. He also seemed relieved to know that my appointment with his colleague, who specialises in MS, was soon (next Monday, 25th). I suppose it makes sense that I have more specialised care - and since my neurologist seems to think that my next route is disease-modifying drugs (DMD's) - he is more than happy for me to have someone who knows more about the condition looking after me.

The news about the DMD's, is again, not unexpected. The implications of them however are certainly hard to take in. More specifically, the information that you are advised not to conceive while taking them (because there has been no research done to tell what damage the drugs may have on the baby). Obviously I am at an age where having a family is becoming a distinct possibility - especially given that I am getting married in less than seven weeks.

So now, we face a dilemma. Do I start the drugs asap and give them a chance to get working before I embark on a family, then come off them in a few years time to have children.
Or, do we decide to have our family straight away, and start the drugs in a few years time, never to come off them again.

In my mind there is no right answer. I have thought continuously about it since Wednesday, and there is never a solid reason to go with one option or the other. The only conclusion I have come to is simple - we want a family, it's just the 'when' part me and J need to figure out.

These feet were made for walking

2010-01-13T10:22:00.000Z

In addition to the continence advice, my neurologist also sent me for another MRI scan. This was completed in Sept 2009, nine months after my original scan.

Before it was completed he saw me at an outpatients clinic and seemed pleased with how I was doing. In fact, his words were simple, “If I hadn’t seen your MRI scan, I would be convinced that you were doing well, so my advice would be for you to go off, enjoy your life, plan your wedding and I’ll see you at the start of 2010.”

But, just a week or so after the MRI scan I got an unexpected appointment to go in and see him again. Naturally, this worried me. And I was right to be worried. He immediately told my fiancé and I that the MRI showed new areas of demyelination. For these to have occurred in less than nine months was a scary prospect.

So a new plan of action has been taken and I am now being referred to an MS specialist at the end of this month. Since then things have taken a downward turn.

My attitude has not changed - I’ll talk about that at a later stage - but I have suffered a few setbacks. The major one involves my feet. At the end of October they started to get a bit numb on the outside edges and it was initially so slight that I hardly even noticed, if anything my shoes sort of felt tight. But then it was very obvious.

I remember having a bit of a cry to myself, but it was more to do with what I thought was coming up ahead than the actual numbness itself. Over the course of a few weeks they did get worse and by the time Christmas came around, I could barely walk.

The numbness started to be intermingled with a burning sensation, which would then give way to a series of pins and needles. It’s a weird feeling, hard to describe and I almost find that what I’ve written doesn’t quite do it justice.

There are also moments when I touch my feet and they are ice-cold, but I can’t feel it. Then when they heat up, they are lukewarm to the touch but absolutely burning inside. At one stage the pins and needles crept right up my foot into my ankle, and the pain was hard to bear. I started hobbling about on my heels, desperately trying to keep the weight off the foot to try and minimise the pain.

It was then that I spent a whole week laid up, moving only to use the bathroom and little else.
To say I found this time hard is an understatement. It was very isolating and my mood dropped considerably. Family and friends were busy getting prepared for Christmas and I know if I had asked them to visit they would have done so but I felt guilty taking them away from busy schedules.

In the end, I made myself get dressed up and join people for dinner and a few drinks here and there. I always drove, or was driven, rarely drank alcohol and was always home before midnight - but the company and atmosphere in itself was enough to get my mood up.

By the New Year the pain had moved from an unbearable grade 10 to a more manageable grade 3. That’s where I am today.

Going every five minutes ...

2010-01-12T16:07:00.000Z

Since then I have been placed under the care of a new neurologist. His approach has been much better - and because he wanted a thorough look at me, he started all of the tests from scratch.
However, in the initial stages he didn’t seem too concerned, mainly because I had no new sypmtoms as such. But he did refer me to a continence nurse which was a major help.

Those with MS will understand when I say going to the bathroom was starting to take over my life. I didn’t like going anywhere if I didn’t know where one was and long journeys had started to become a real difficulty. This is because I was going practically every hour, if not more.

Looking back, I had spoken to my GP about the frequency with which I went to the toilet, but he fobbed me off saying everyone was different and I would get used to it. But I now know that this is actually a sign of MS.

Thankfully, my appointment with the nurse has changed how I live my life. She has given me a prescribed drug that regulates the frequency with which I need to go, and to say it has given me back my freedom is not overstating the situation.

Emotionally, the bathroom issues were one of the hardest to deal with. I used to be embarrassed that I was running to the toilet so often and became paranoid that everyone was watching me go all the time.

It was even consuming me so much that my upcoming wedding day started to look like it was going to be taken over with me running to the toilet in my gorgeous gown - and it wasn’t a prospect I was looking forward too. Now, with the tablets working really well, it’s a problem I’m no longer worried about!

Getting some help

2010-01-11T13:37:00.000Z

Thankfully, my uncle is a doctor - a retired one but someone who knows what he’s talking about. After calling my parents and telling them the news, he was my next point of reference. And was amazing.

Immediately, when I said the neurologist was vague, he scorned, “He was just too scared to tell you the news properly. That’s what these people are like. He’s only flown in to cover a back-log, and he has no vested interest in your long term health.”

Straight away he started thinking positively. His friend and colleague works closely with MS patients and he believes fully in the treatment of Hyperbaric Oxygen Treatment (HBOT). This sort of treatment is a controversial one in the land of MS, some patients feels it gives them a boost, others believe it does no good whatsoever.

It basicially involves sitting in a chamber (not unlike those used to help divers who fall victim to the BENDS), being decompressed to 16, 24 or 32 feet, and once the chamber is decompressed, breathing in pure oxygen through a mask.

The idea is that the decompression allows oxygen to get into the system more effectively and subsequently helps repair the nerve damage in the brain that causes MS. In my mind, there was no question about whether or not I would give it a try - it is simply pure oxygen, and even if it does me no good, it certainly won’t harm me either.

In the immediate six weeks following the inital tentative MS diagnosis I undertook 20 hours of oxygen treatment. Since then, I have tried to get at least two hours of HBOT every month, sometimes four.

Meanwhile, I asked my GP to refer me to see a more permanent neurologist based in my Trust. Going back to see the initial doctor was simply not an option.

“Is it MS? Maybe. Maybe not.”

2010-01-08T10:54:00.001Z

These early posts are a background - getting to where I am today - and follow on from previous posts.

I was called back to see my neurologist - someone drafted in by my local health trust to plug the gap in neurology services. As such, he only came to the city during weekends and my first proper appointment with him was in April 2009.

Because it was a Saturday, my other half (from here on in, called J) was lazing about. He had been up early for work all week and I insisted that he stay at home. This is a reflection on just how sure I was that nothing was wrong. But when I sat in front of my neurologist, he talked around the results before tentatively coming out with, “There’s a chance that you have MS.”

As a journalist I had interviewed MS patients before, I knew what it meant and I remember switching off a bit as he continued the conversation. He was very vague. “Is it MS? Maybe. Maybe not.” But he was very clear that my MRI scan had showed up sections of demyelination in my brain - a sign of the condition.

The rest of the conversation seemed to fly by. He told me to go home, live my life and see what happened. In fact, his very words were, “Come back and see me if something happens. You know, if your foot falls off or whatever.” On reflection, his manner with me was disgraceful. I can only hope that anyone else who has the unfortunate circumstance of seeing him after me is treated with a bit more dignity. That he told a young woman, with her whole life in front of her, news with such massive consequences, and play it down so off-hand, is beyond belief.

But, there was nothing I could do but drive home and ponder the future. When I walked in the front door, my fiancé took one look at me and I burst into tears. In the few seconds it took for me to get out exactly what the consultant had I said, I think J had me dead and buried.

In all of this situation, that’s something I hold close. I was not given a death sentence.

Investigations begin

2010-01-07T15:44:00.000Z

Visiting my doctor was not very helpful. Rather than focus on what I was telling him, he seemed intent on finding out if I was depressed or not. I suppose it didn’t help matters that I was sat in front of him, near breaking point and unable to voice my real concerns.

But the second collapse had really shook me up. And while I have real empathy for anyone who suffers from the horrors of depression, that wasn’t what was wrong with me.
Eventually he was convinced that I needed some further help and/or investigations done.
So, I was pencilled in for a neurology appointment.

Again, the doctor wasn’t the most helpful - which is becoming a recurring theme - but he did decide to send me off for an MRI scan.

Given that the scan wasn’t completed until January of 2009 - some six months after the second collapse - I had honestly put all thoughts of being sick to the back of my mind. Apart from feeling tired and few headaches here and there, I felt fine.

Also, in October 2008 my darling boyfriend proposed, and my thoughts had been taken over by wedding preparations.
But when the MRI scan came round it did make me think - what if there is something wrong?

Then, the women operating the MRI explained that I would be in the tunnel for around 40 minutes, with four seperate scans being taken. I counted out the scans and was relieved it was over.

However, when I was taken out she explained that I actually needed two more scans done. It worried me that this was in addition to the usual procedure - and I did wonder if there was something amiss that she felt was worth investigating further.

But told myself that if anything was REALLY amiss then my neurologist would be duty bound to tell me asap - with nothing forthcoming from him, I put my head down and got on with organising my wedding.

My feet just gave way beneath me

2010-01-06T09:38:00.000Z

To make sense of where I am now, it makes sense to give some background.

I firstly collapsed at work. My feet just seemed to give way and one minute I was chatting to a colleague, the next I was on the floor. I’m not sure who was more taken aback, me or her. Once I had gotten over the mortification of collapsing in the middle of a busy news office, my boss demanded I go straight home and take a few days off. But if truth be told I felt fine seconds after I fell.

However, I had just started a new role at work, my duties were increasing by the day and I did feel exhausted. Being sensible, I took his advice and spent a few days at home making the most of being pampered. Then just a few weeks later, with work getting busier and me taking little rest, I found myself at breaking point.

I spoke to my boss again and he apologised for my workload getting beyond anyone human. As such, he told me to take it easy the next day, have a lie in and meander into work once I was up and ready. Taking him at his word I slept until I woke and decided to treat my boyfriend and I to a homemade breakfast of pancakes and syrup. And then, standing at the cooker, in charge of flipping over a pancake, I fell to the floor again. No warning, nothing.

I was literally standing there one minute and my other half was picking me up off the floor the next. It was an experience I wouldn’t like to repeat in a hurry. My abiding memory of the day was him panicking, saying over and over, “What happened?” and me unable to answer. I just couldn’t put into words the way I felt.

But I knew this, I had to get some answers.

And so it starts ...

2010-01-05T15:09:00.000Z

As someone who writes for a living - in my capacity as a journalist for a local newspaper - I have toyed with the idea of setting up a blog many times. In fact, a few years ago I even contributed to one as my colleagues and I attempted to lose a few lbs after Christmas and we thought writing about our lapses into chocolate binges would help keep us away from the inevitable munchies.
Now, a few Christmases later - and probably only a few lbs lighter - I have finally bitten the bullet and decided to write a blog of my own. And it comes off the back of a more life-changing topic than losing weight.

Last year, in April 2009, I was referred to see a neurologist after I suffered from chronic headaches and collapsed a few times with little explanation. As an otherwise healthy 26 year old, I honestly thought my problems were down to stress at work and little else.
So, I was completely floored when he mentioned the possibility that I may in fact be suffering from Multiple Sclerosis.

A bigger blow he could not have thrown at me.

I’m hoping this blog gives me an outlet to vent my exasperations and rejoice in the good as I try and live my life in as positive a manner as possible - this is my account of a life coping with MS.