Getting over the grief

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

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

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!

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

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 ...

... 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

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

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!

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

** 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

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

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

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

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?

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

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

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?

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

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

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

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

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

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

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

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

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

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

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

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.