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.

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