Tuesday, 20 December 2011

Week four after the Big A

Such is the saddo that I am, I am constantly surfing the web looking for new information about MS and possible treatments and I just happened to be reading something on the Big A when it reminded me that I need to have monthly blood tests to check my blood count.
Then I realised I was now in the fourth week after having the treatment so I hot-footed it to the day unit at the hospital and got my blood done. Why I need to get my blood checked monthly has been explained to me but I can't remember why it needs to be done although I suspect it has something to do with the possible side-effects the drug can bring on.
So week four has been, again, very uneventful.
We are all still fighting off the cold that my very thoughtful family member decided to share with us the weekend before last but it hasn't been too bad. My baby son is worst and on antibiotics but I seem to have got away with it - touch wood!
And hopefully this uneventfulness will continue.
Merry Christmas x

Thursday, 15 December 2011

Week three after the Big A (and I'm moaning)

If things had been going to plan and I had stayed away from people with the lurg, this week would have been fine. I am sure my energy levels would have continued to rise and I would have been feeling back to my old self.
But things haven't quite gone to plan. 
A weekend visit to family resulted in me catching a disgusting cold thanks to the thoughtfulness of a certain family member who failed to tell me he was ill before we arrived (knowing my immunity was compromised and giving me the option of staying away) and so I had to socialise with him and his filthy germs. 
Despite his insistence that my immune system would be back to its full strength now, after all it has been all of three weeks since it was obliterated, and the doctors were just being over-zealous in their warnings to stay away from the ill, I caught the bug.
It was not a surprise to be honest - the way he was sneezing, I'm surprised he didn't infect the entire village.
All week I have been feeling rotten. The fatigue has been at an all time high and I generally feel really run down and under the weather. 
To prove I am feeling run down, a HUGE spot has erupted on my chin. It seriously is like a parasite and has a pulse and everything...! I fear it is going to be here for the duration of the Christmas festivities.
I digress.
So I can't really tell you what the Big A treatment has left me feeling this week because I have this cold and it has taken over everything else.
I have finished the anti-viral pills issued to me after the Big A though so that is one piece of Big A news but apart from that, I really am just doing my best to get over this cold. *cough cough, sneeze, sniff*

Wednesday, 7 December 2011

Let's get moving

I've just completed my first bit of exercise since I had the Big A - and I've gotta say, I feel brilliant!
It was 45 minutes of (light) weight bearing aerobics done in the comfort of my living room in front of the telly with a very nice American lady (Erin O'Brien's Strong Body Ageless Body if anyone is interested) telling me what to do. My heart was beating fast, I was pink cheeked and had a sheen of sweat and it has really cheered me up.
Since being told I had MS, I've been nervous of doing exercise because if you read everything I've read on MS, you start believing that getting hot will bring on symptoms. I used to enjoy running - ok jogging. Oh ok if you want to be pedantic about it, fast walking, but I've been worried about going out on my own for a run in case I get a spasm or my feet go numb or my balance goes weird and I am stuck on the streets of north Cardiff  miles (alright, I'll admit it - just a mile) away from home with no way of contacting my husband to come and rescue me.
So I thought I would see how I coped with a fitness DVD and you know what - it has cheered me up no end. For one thing, I could do most of the moves despite months of idleness and also that my old friend MS was happy enough not to join in!
So bring on tomorrow when my muscles decide to punish me for getting them to work - I can't wait for the ache. It's been too long.

Monday, 5 December 2011

Week two after the Big A

The last week has been a tale of two halves.
Week two after the Big A started off okay. I actually felt pretty normal and then mid-week came and it was downhill from there.
To say I had a lack of energy would be a complete understatement.
There were a few moments when I actually didn't think I had the strength to get through the day and the longing to phone my husband to come home from work and take over babysitting duties so I could just curl up on the sofa was almost overwhelming.
Being the brave little soldier I am, I resisted ringing him and forced myself to get through the day feeling light-headed, weak and altogether pathetic.
Headaches have been a source of irritation. Usually coming on during the night and waking me from my slumber, they have been pretty intense but I was able to get them to subside about half an hour after taking a couple of paracetamol.
The weird thing about the intense fatigue I've been getting is there doesn't seem to be any trigger. I either wake up feeling great or I wake up feeling like death. There doesn't appear to be any reason for the fatigue or any reason for why it disappears.
In terms of avoiding bugs, well so far so good. I have been shunning places where I know there will be lots of people. Christmas shopping has been done online as has the weekly 'big shop'.
I've also avoiding hugging and kissing visitors to the house and haven't been apologetic about it either!
And my hands are starting to get quite sore because I am constantly washing them.
I'm still taking the anti-viral tablets but as I enter week three post-Big A, I'm feeling positive that my immune system is rebuilding itself and that I may well have gone through the worst now.

Monday, 28 November 2011

Licence to drive?

Things are getting better - I feel less weak and I'm starting to feel back to normal. In fact today, I woke in a fab mood. The baby had slept through the night (well virtually) and today was the first day I was going to be flying solo without my husband babysitting me and the baby since I came out of hospital.
And then the post arrived.
Along with the usual brown envelopes that seem to land on the doormat every morning was one from the DVLA.
On diagnoses in June, my neurologist had told me the only people I had to tell was the DVLA. "It's very unlikely they will take away your licence," he said. "You just have to let them know."
So I duly did that and it has taken until this morning to hear the outcome. Thankfully it hasn't taken away my licence.
But what it has done is issue me with a new licence which will expire in three years when my health will have be assessed again by its officials before it will issue me with another temporary licence.
It's made me feel a bit sorry for myself again. Okay, I can still drive legally at the moment. But will the DVLA officials have a different set of health problems to consider in three years time when it comes to the decision to renew my temporary licence? Will MS behave itself in the next 36 months so I'll still be considered fit to drive?
Driving has always been something I've seen as my freedom. Brought up in a small rural village, with a bus service that ran hourly and not at all on Sundays, driving was a lifeline as a youngster. Everybody booked their first driving lesson on their 17th birthday and it was a race to learn how to make your feet and hands work independently to control your mum's clapped out Ford Fiesta.
And then when that magical day happened and you passed your test, suddenly the world became your oyster. As long as you could win the argument with your siblings over who was going to have the car, scrape together enough cash to put some fuel in the tank (in those good ole days 55p a litre of petrol - yes that's right, you did read that right, 55p!!) then you were free.
The date of expiry on the licence that was issued to me shortly after passing my test all those years ago was the year 2047 and I always thought that date would be the day I'd have to hang my keys up for good.
I don't have and never have had a speeding ticket and I've only had one minor bump in the 17 years I've been on the road - doing anything which could jeopardise being able to drive is just something I never contemplated.
But yet again, my old friend MS has taken control and it is in the lap of the MS gods in three years time whether or not my licence will be approved again or not.
I am pinning all my hopes once again on the Big A treatment saving me from a driving-free future.

Friday, 25 November 2011

Time to crack on

There has been little change over the last few days. My energy levels are still low but I have been able to do a bit more - even if it means having to sit down for an hour after.
One of the things I've been experiencing has been crippling headaches during the middle of the night. They wake me up and it literally feels like a knife is being stabbed in my skull. I've always been prone to tension headaches but these are slightly different in that they make me feel nauseous and it hurts to do anything - even lie down. Paracetamol eases it after about half an hour or so but that 30 minutes before it starts to kick in is a killer, even reducing me to tears. Boo hoo!
But today is a new day and for the first time in a while, I have put make up on and am determined to get myself at least 30 miles down the road to recovery. This sitting around is surely not doing me any good and now is the time to seize the day and crack on with life.
And if it means I am exhausted tomorrow, well so be it.

Tuesday, 22 November 2011

Daytime drivel

Absolutely wiped out at the moment. Doing anything is a major effort and so I haven't been doing much apart from lying prone on the sofa watching tripe daytime telly - although if I watch much more of this drivel I don't think I will ever get better.
I think the NHS would save a packet on anaesthesia by forcing patients to watch four hours straight of this stuff - it is, in two words, mind numbing.
My hands have started to feel a bit MSy - not too bad but they feel a little tingly and stiff and as if the skin is not as sensitive to feeling as is usual. I was expecting something like this though so it's not sent me into a spin or anything and I'm sure once I start to pick up a bit, it'll disappear again.
I also have a sore throat which could be another reason I'm feeling so washed out. Again, not unexpected - I have just had my immune system battered by horrific drugs.
So everything is just as I was expecting it to be. I'll just carry on with the anti-virals and the paracetamol and hope for the best. I have stopped the anti-histamines though - they were making me even more sleepy than I already am. Between them, the daytime telly and the general lethargy, I was no use nor ornament to anyone!

Sunday, 20 November 2011

Day two after the Big A - and I'm outta the closet!

I am feeling fine. I am a little lacking in energy but all-in-all I am ok.
There is no way I could do an epic shop or spend the night dancing. Chilling out at home is really the only thing I fancy doing to be honest but that is fine because that is precisely what I am doing.
I have to say, I felt much worse yesterday and didn’t hold out a great deal of hope for today when I went to bed last night. But the power of sleep never ceases to amaze me and today has been a whole different ball game.
And I reached a momentous decision this morning - I am pleased to let you know that I am now OUT OF THE MS CLOSET (or cupboard as I prefer to call them!)
Yep, this morning, I decided it was time to stop being such a wimp about having MS. Yes it is rubbish, but as was proved to me by some of the fellow patients of the hospital ward I was in last week, it could be a lot worse.
I’ve just had a really up-to-date drug to try and force my MS into hibernation, I don’t have any permanent symptoms to speak of and quite frankly, I’m as lucky as I can be with a diagnoses like this.
And so I finally got the courage to ring around various family members to let them know – and their reaction was pretty refreshing. Yes it is rubbish, but I’ve got it and now it’s time to get on with it. And despite my reluctance to land this enormous weight on them, my fears that they wouldn’t cope were completely unfounded and I feel cross with myself for under-estimating them. Funnily enough, I feel like a huge weight has been lifted in that I no longer have to try and hide something from them and I can just be me again.
There is one thing that’s changed in me, probably for the worse, and that is my empathy towards other people whose problems seem tiny and insignificant now. I just can’t stand listening to the moaning and whining of people who are fed up in their job or have fallen out with their husband or have a nightmare boss or are getting over a break up of a short love affair. Don’t get me wrong, I hate seeing them sad and fed up but at the same time, I want to give them a quick hug and then turn them around and give them a size six kick up the bum and tell them to get on with it! Life is too short to be messing about. But then I guess that as someone who has just come to terms with being told they have MS, I would be saying that and as time goes on, I too will start moaning about the mundane again. That’s being human for you!

Saturday, 19 November 2011

One day after the Big A

To described how I'm feeling at the moment is just a four letter word... WEAK!
I am as weak as a kitten, I have zero energy and generally feel like I've the remnants of a hangover (ha! I should be so lucky!)
It got so bad earlier, that I actually had to sit down in the middle of my shower while trying to rinse my soapy hair. So bad, I had to shout to my husband to help me up because otherwise I would still be sitting there.
It took all the energy I could muster to dry and get dressed and then that was it - I was totalled. Even trying to sit at the table to eat lunch was a huge feat. I had to rest several times between mouthfuls because it felt like my body was too weak to hold my head up.
Writing this is actually a real effort and I'm going to stop soon.
I don't know if it is a low blood pressure scenario again because this is how I felt yesterday in the hospital when they hooked me up to fluids.
Also I had to take my ventolin inhaler earlier which I use for mild asthma - I haven't had to use it for a while now but my chest got really tight all of a sudden and I really needed it. It eased within minutes after taking a couple of puffs but shocked me how quick and without warning it came on.
So I am now holed up on the sofa and have no plans to move from here for the next day or so. I am quite surprised at how awful I feel to be honest - I genuinely didn't think it would feel like this. Ah well, it can only get better now so I'm going to try and enjoy the forced recuperation.

Friday, 18 November 2011

Day five of the Big A

I am writing this from the comfort of my home after leaving hospital earlier. It has been a long week and one I thought would carry on forever.
Last night, I had a reasonable sleep apart from a slight temperature and headache.
On waking, I had bloods and urine tests as has been the norm over the course of the week before the treatment began.
Unfortunately, I had a bit of an added complication this morning after my blood pressure dropped leaving me light headed and weak. So after getting my anti inflammatory and anti histamine, I was hooked up to the alemtuzumab which was due to take three hours. But this time, in my other arm, I was hooked up to a saline drip to try and encourage my blood pressure to rise.
As you can imagine, being hooked up to a trolley from both arms was not the easiest and so I spent the majority of the infusion resting and dropping in and out of sleep.
My blood pressure, temperature and pulse rate was checked every half an hour and soon enough the whole thing was done.
I didn’t have any ill effects from today’s dose and apart from a feeling of overwhelming fatigue, I am feeling ok.
I was given a three week supply of anti-viral tablets and anti-histamines to try and stave off any reactions or bugs which may come my way and told to be a bit sensible – avoid situations where colds etc can be caught like busy lifts, and be sensible about food in the same way someone who is pregnant should – avoid soft cheese etc to prevent catching listeria and then off I went.
Every month, I’ll have to get a blood test to check everything is ok but with any luck, that should be it until next November.
And now, I am going to put my pjs on and put my feet up on the sofa with a cup of tea and a biscuit, safe in the knowledge that at least tonight, I am not going to be woken up by someone wanting to take my blood pressure at 2am and 6am!

Thursday, 17 November 2011

Day four of the Big A

It is fair to say, last night was the worst night I've had since I started this treatment. At about 11pm I started suffering awful stomach gripes and nausea. To try and put in a gentle manner, on attempting to ease the symptoms, my body was having none of it and didn't want to get rid of anything that was causing me to pace the floor, sweating, shaking and generally feel like a zombie.
In the end I resorted to taking an anti sickness pill, followed by a couple of codeine tablets and by 1am was finally feeling more like me. The flush on my cheeks reappeared briefly but apart from that, any other side effects were gone by the morning.
And so at about 8am I was hooked up to the drip again but this time it was minus the steroids which had been given on days one, two and three before the alemtuzumab. This also meant that the infusion of the alemtuzumab was given to me over three hours rather than four and a half.
Feeling quite tired with a general lethargy, I slept through most of the infusion – being woken up every 15 minutes to get my blood pressure, pulse and temperature checked as has been the norm so far during the treatment.
I’ve been feeling fine in the hours following the infusion so far and it has been particularly nice not to be plagued with the awful metallic taste brought on by the steroids. The nausea has eased and I haven’t felt the need to ask for any other medication to combat any side effects brought on by this morning’s infusion.
So far so good. Even better news is that I am to be getting my fifth and final infusion of alemtuzumab first thing tomorrow and should be able to leave hospital at about midday clutching my hospital bag in one sweaty hand and a bag of anti-viral pills in the other. And with any luck, tonight will be problem free, and the next eight weeks will also be bug free.
All in all, the one word that springs to mind to sum up today’s events is: Phew!

Wednesday, 16 November 2011

Day three of the Big A

Well it’s been a bit of a grim day today. It kind of started last night. As I lay in bed trying to sleep I felt my face start to get a bit warm. It is fair to say that my skin colouring can be described as pale – so pale in fact, I am virtually see-through. Or to sound a bit more ladylike (hahahaha) I'm pretty translucent. Anyway, my cheeks started to get rather warm and on inspecting, I was astonished to see that I now resembled someone who had forgotten to put sun cream on and then sat on a hot exotic beach for several hours staring at the burning sun. To put it mildly, I looked like a lobster. It didn't itch but it did bring about comment from the other patients. Was this the rash I had been told to expect? Who knows? By the morning it had calmed down and although still a pink tinge remained – English rose style, it was not so angry looking and I no longer resembled someone who had just run a marathon (ok a mile in my lack of fitness state!)
Unfortunately it was a sign of things to come. First of all, the anti histamine and anti inflammatory pill were taken and the steroid were given but the vein which until now had been so accommodating decided it had had enough and became painful, lumpy and was angrily telling me it had had enough and so the canula had to be relocated before the alemtuzumab could be given. Not only that but the metallic taste was back with vengeance and I was consumed by nausea and generally felt really rotten.
However, an anti-sickness pill helped me cope with the nausea and I was able to carry on with the alemtuzumab in a state of utter exhaustion and lack of energy and therefore sleeping for the majority of it.
It hasn’t been a great day but at least I am more than half way through the treatment now.
Today on the ward, I was joined by three people who were being treated for what one of them described as Rag Doll Disease. Something I had never heard of and when I heard what these people are going through makes me want to snap out of my own MS misery and count my blessings. One patient told me that she has been on a life support machine several times due to her illness and has to take a three day course of infusion treatment every 19 days in order to keep her symptoms under control. She was pretty pragmatic about what she has to put up with but equally and understandably seemed disappointed, angry and fed up about the disease she was trying to fight.
Up until this year, the various neurological conditions that can strike anyone and without warning, had never really crossed my mind. I was ignorant – and still am really – about the dozens of horrible, nasty illnesses that people have to contend with on a daily basis; and how these people cope often with good grace and humour as well as a heartbreaking acceptance of their lot in life.
It really has reinforced my newly found courage that maybe soon I should stop being such a wimp about telling people what I have got and in the words of one of the inspiring people I have met this week to “educate them” about what MS is and how I’m trying to fight my way out of its clutches.
So day four tomorrow... let’s see how that goes.

Tuesday, 15 November 2011

Day two of the Big A

Well there isn't much to report on day two – it’s more or less been a repeat of day one to be honest. There was the anti-histamine and anti-inflammatory pill as I had an hour long infusion of steroid followed by the four and a half hour infusion of alemtuzumab and then the flush through of saline solution. The only thing missing today was the headache which had got worse after yesterday’s session ended.
I feel quite drained today though – kind of half baked and lacking in energy but this could be down to being stuck in the sleepy atmosphere of a hospital ward. Even though the staff bustle about, the patient is expected to be looked after and it’s pretty easy to let yourself fall into that role.
I had an interesting afternoon though letting 18 fourth year doctor students quiz me to try and work out what my diagnoses was after I described what symptoms I had experienced over the years. There was a slight moment of panic when on entering the classroom I suddenly realised that these doctors of the future could diagnose me with a horrific neurological disease after listening to my symptoms – then I remembered that is exactly what I have! Oh the mirth...
Anyway, short and sweet I know, but really there is nothing more to describe about day two of the Big A treatment – am pleasantly surprised to be honest and hope that day three, four and five continue to be problem free.

Monday, 14 November 2011

Day one of the Big A

Nine o’clock sharp, I arrived on the day ward as instructed with my bag packed for a five day stay and made myself at home.
I had a canula put in and bloods taken and then was given an anti-inflammatory pill and an anti-histamine. Shortly after, I was hooked up to a drip which pumped steroids into my body. I was still feeling fine, apart from a cold sensation that was running into my arm from the steroids and an odd metallic taste on my tongue.
It took an hour and then the drip was changed to the Alemtuzumab and I had my blood pressure, temperature and heart rate checked every 15 minutes. I didn’t feel too bad to be honest – a little bit nauseous but that could well have been the jumbo packet of wine gums I managed to stuff into my face waiting for the treatment to start (I’ve always been a bit of a piggy when it comes to easing boredom!)
The first session of the Big A took four and a half hours to be pumped into my body and despite reading the horror stories of all-over-body rashes and the re-emergence of old MS symptoms, I have to say I don’t feel (or look) much different from before it started – a bit of a headache but nothing that a couple or paracetamol couldn’t take the edge off. And I had another dose of the anti-inflammatory pill. After the Big A had finished, it was flushed through with saline for about an hour.
One thing about today which I didn’t expect was a normalising feeling towards the MS after speaking to a couple of other patients – one who is having her third infusion of the Big A. She said she’s been virtually symptom free for the last three years but seems pretty pragmatic about how long this status quo will remain saying that when things start to come back then she’ll just have to start looking at alternatives.
Then there were two others having their monthly infusion of Tysabri (I think). Both had pretty much accepted that this monthly thing was to be a lifelong commitment saying the benefits of it outweighed the negatives - and the alternatives. I felt quite humble after hearing some of the daily struggles they were going through as they got on with their lives worrying about when the new kitchen would be finished and who was going to pick the kids up from school.
But weirdly, it just felt good to talk so openly about it.
After living in my cocoon of only unburdening myself to my husband; Of living a life afraid that my secret would come out to those who I haven’t revealed this thing to yet; Holding back a lot of real worries – worries I didn’t even realise I had – to stop the ones who knew from thinking that ‘Miss Independent’ wasn’t coping, I just felt enormous relief chatting to these people who knew what I am trying to get my head around.
Don’t get me wrong, I didn’t start pouring out my grief-stricken thoughts about having this thing expecting these people to have some kind of random counselling session to make me feel better. It was really quite matter of fact – they asked me when I was diagnosed and got my story without too much probing and without me thinking about what I was actually admitting to. It was just so... normal.
There was sympathy from these people that I felt so secretive about having MS. They looked at me like they knew what I felt like – that they’d been there. Either that or they thought I was being a total loon and were being polite to my whinging.
These patients, going through their own versions of the MS hell, were just getting on with it. It was just something in their lives they had to cope with – without trivialising it, it was almost like MS had become a vile and filthy chore that keeps throwing up new things to make it harder to do the task, but all the same, dealing with the chore is something that has to be done.
So even if I don’t feel any differently from having the first Big A (at the moment at least) I feel a lot better about having MS. (Even as I write this I think ‘how weird! Only this morning I was desperate for it never to come out publically but now I don’t think I’d care’ I’m thinking it’ll be a different story when I’m out of the safe MS zone of the hospital ward but we’ll see.)
Let’s hope tomorrow is another positive day. 

Friday, 11 November 2011

It's all systems go

I had an appointment with my neurologist this morning and the Big A (alemtuzumab) treatment is going ahead first thing Monday morning so here goes!

Monday, 31 October 2011

Have I really got it? Really?

Two weeks today and I will be starting the Big A (alemtuzumab).

But suddenly I am actually wondering whether I need it or not. For the past couple of weeks, I've been feeling so well. 

I don't feel tired. I don't feel unsteady. I don't feel a bit weird behind the eyes. I haven't had a spasm for weeks. I don't feel worried about going out on my own in case my balance decides to diminish suddenly. And my skin doesn't feel tingly and numb.

Could the neurologist have made a mistake?? All of a sudden, I had this feeling crawling all over me that it was all a huge error on his part. He'd got it wrong. Those brain scans which showed multiple new lesions were nothing but a lie.

In a fit of hope, I rang my wonderful MS nurse. 

"So, um, I know this might sound like a weird question but, um, do you reckon it's been a mistake?" I asked her hesitating for a split second wondering to myself if this poor woman was going to think she's got a total loon on her hands.

A deathly silence for all of 10 seconds. Count it in your head... it's a long time waiting for an answer which could shatter your dreams.

"I know what you are saying," came the reply in a kind and gentle way, "but your neurologist is truly excellent at his job and it's really unlikely that he would get it wrong."

"Just enjoy feeling well blah blah blah..."

I knew I was being a fool for asking because of course they wouldn't get the diagnoses wrong but the hope that had flooded through me that they were wrong really had started to convince me that this MS was just a dark and horrible nightmare which I was about to wake up from.

So now, I'm back to trying to come to terms with this thing. 

At least the alemtuzumab dream is still there.

Tuesday, 25 October 2011

Wine, tights and spasms

So it is now 20 days until the Big A (alemtuzumab) treatment and I am trying to meet up with as many people as I can because after the treatment I'm going to have to lay pretty low for about six weeks in order to avoid catching any bugs. (Although none of the people I'm saying my temporary farewells to know that saying au revoir is what I'm doing.)

To be honest, I've been avoiding social situations for a while now. Once upon a time, I was out every weekend. People were used to seeing me turning up to work on a Monday, bleary eyed, fuzzy headed and gushing about what an amazing weekend I'd had. Invites to parties were always accepted and few needed to say it was going to be a boozy affair because that was taken as a given.

But then my old friend MS started to make its appearance felt. A glass of wine and suddenly my hand would start to spasm painfully. Clawed and with a mind of its own, the pain would spread up my arm until it hit my shoulder blade.

At home, it was ok - I didn't need to hide it from my husband. But out and about? Well that was a different story.

A couple of times, I found sitting on my hand was the only way to cope with it. A few minutes later and the spasm would pass.

But even though it was just a few minutes, my night was ruined because that few moments reminded me that I have MS.

That I have this vile and hideous disease that I can't control; that I can't do anything about; that makes me stop dreaming and instead makes me wonder how disabled I'm going to get? When will I end up in a wheelchair? When will people stop looking at me like me?

And so the self-pity and the anger sets in.

Once, I was at a wedding and had donned some very attractive 'hold my belly in tights'. I went for a toilet break and there was a queue. Finally it was my turn, so in I went, spent a penny and then attempted to pull up the 15 denier nude tights without laddering them and manoeuvring my post-baby belly back into the fat-busting panel. I won't lie... the situation was tense! More so because there was now some desperate-for-the-loo fellow guest hammering on the door begging for me to hurry up. And as if by magic, with my hand halfway down my tights, MS decided to strike and my arm spasm returned.
I was now trapped in that cubical with a woman desperate to get in outside and me on the inside desperate to get my hand out of its spasm (and my tights). In the end, I gave up. Sat down on the toilet lid and waited for normality to return before pulling up my tights and wiping my eyes from the tears that had suddenly escaped.

So, that's why I've been avoiding social situations because there's only so much sitting on my hand in a night I can take. It's not because I don't like going out anymore. It's not because I don't like getting giggly over a few glasses of wine anymore. It's not because I've turned into a stuck up snob.

It's because I can't show the world that I'm out of control when MS comes out to play. I can't show the world yet and I'm not sure if I ever can.

That's why I'm pinning my hopes - all my hopes - on the Big A and praying that it works.

Friday, 21 October 2011

What is alemtuzumab?

I thought I better give a little information about alemtuzumab so instead of giving you what I (probably inaccurately) think it is, here is the MS Trust info on it (and I've copied a bit below if you can't be bothered opening the fact sheet!)

1.  What is alemtuzumab? 
Alemtuzumab is an experimental drug treatment that is currently being tested in clinical trials for people with relapsing remitting MS. Although alemtuzumab is not currently licensed for use in MS, it is licensed for use in B-cell chronic lymphocytic leukaemia, a type of cancer. 

2.  How does alemtuzumab work? 
Alemtuzumab is a humanised monoclonal antibody. Antibodies are proteins produced by the immune system to fight foreign substances, such as
infections. Monoclonal antibodies can be produced in large quantities in cell culture in a laboratory and can be designed to bind to proteins on the body’s
normal cells, altering the immune response.
Alemtuzumab acts by killing T-cells which form part of the immune system.  In multiple sclerosis T-cells mistakenly attack myelin and cause the inflammation
seen on MRI scans. It is thought that the T-cells that regenerate following treatment with alemtuzumab do not include the subset which destroys myelin.

I will be getting one course of treatment (over five days) in 24 days time. I will then get my next dose a year later over three days and I may have a third dose 12 months after that.
From what I can gather, the treatment can make you feel tired, you get a rash and you can see a temporary re-emergence of MS symptoms you may have already suffered. And because the treatment destroys your T-cells, for the six to eight weeks it takes your body to regrow better behaved T-cells, your immunity is weak so you are advised to stay away from people with colds, flu and any other contagious illnesses.

Thursday, 20 October 2011

To begin at the beginning

Hi, I am Sian and I have Multiple Sclerosis - fondly known as, MS.
I never thought I would ever have to say that.
Actually I still rarely say it.
Nine people in total know I have MS. Me, my husband, my mum, my dad, my neurologist, my MS nurse and a couple of friends and colleagues. Oh 10 if you count my dentist because last time I went for a check up he asked me if there were any medical conditions since my last visit. The question took me by surprise and it was the first time I had admitted it outside the circle of people who already know.
And I should confess, my name isn't actually Sian. But until I finally get the courage to admit it to other people that's how it is going to stay. 
Those with MS will probably think I'm a total idiot for being so coy about having it. But I'm not ready to answer the questions of the people I tell. Or, more truthfully, I don't want opinions to change of me from my nearest and dearest... and from those who don't think much of me. Yes, I know I am probably being a bit of a fool but I'm still trying to get to grips with this thing and I have serious moments of darkness about it at times.
So I've started this blog because I am about to undergo a treatment called alemtuzumab (also known as Campath and Lemtrada) and apart from this excellent and personal account from David Sturt on how he coped with having it, there hasn't been much patient point of view I can find on it - lots of medical information but not how it actually feels.
I am nervous but I am so hopeful about it. 
So in 25 days time I am going to be at University Hospital Wales in Cardiff getting my first dose. Bring it on.