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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