Where does the time go?

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

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??!!

The dreaded relapse strikes

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

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

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.

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.

“Is it MS? Maybe. Maybe not.”

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

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

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 ...

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.