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. 

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