Written on Thursday 10th October
I just passed my stairs assesment! Woot woot. It was a pass/fail sort of thing but if it had been graded I reckon I’d have got an A-
Good attitude, ability to follow instructions and enthusiasm. Points deducted for nerves, occasionally forgetting where my crutch is supposed to go and speed (or rather, lack of it).
I can’t believe that in just one week stairs have gone from being my arch nemesis to being just another normal everyday thing that I can manage. Admittedly with a lot of extra effort and a crutch but even so.
We no longer need to consider bungalow living, unless we want to. There is a certain appeal to it that I keep coming back to- of having everything right there on the same floor. Plus I like that it’s a bit different and non-traditional, in this country at least.
On the other hand, the dog could and would go anywhere he liked. Cat fur on the bed is bad enough, Fudge sheds about a guinea-pigs’ worth of fur each and every day. And cooking smells would get everywhere. Plus, it’s just not very sexy is it, if we’re honest? Living in a bungalow under the age of 30?
So, it’s good that we now have other options 🙂
Written on Wednesday 9th October
The plan from neurology, when it came was simple: IMMUNOGLOBULINS.
A medical registrar I’d never met before came to tell me and to explain the risks. Chris was with me at the time and she told us that the biggest risk was of developing a blood clot but that they would try to reduce that by prescribing an anticoagulant. She also explained the risks of reaction and that there was a tiny chance of it causing abnormalities in my pregnancy.
I’d like to say that it was a huge decision to make, that we deliberated for hours, weighing up the risks vs reward, but it just isn’t true. A couple of minutes of hesitation was all it took.
At that time I couldn’t move independently at all. So yes, I worried about the risks, and yes even now I feel horribly guilty that I consented to something that could potentially harm our baby, but what kind of life could I lead without the use of my arms or legs, what kind of mother could I be to the 2 children I already have?
The chance of the immunoglobulins having a significant impact on my condition far outweighed the small possibility of harmful effects. To say yes was an obvious choice.
(And yet here I am, trying to justify it on paper).
I had my first IVIG (if you think I’m typing Immunoglobulins each and every time you can think again!) on Friday evening (the same evening I had to be picked up off the bathroom floor). On Saturday morning I could get off the toilet by myself. By Sunday morning I could shower by myself. By Monday morning I could walk alone with 2 crutches. Yesterday morning I went down to 1 crutch. I had my final dose yesterday evening and aside from a headache today I feel like I could take on the world! (Or at least be a functioning part of it!) It has been a truly amazing transformation.
Each bottle of IVIG comes from 1,000 individual donors. I weigh 68kg so was prescribed 30g but as the hospital don’t supply 30g/300ml bottles each evening I had 2 bottles- a 20g/200ml and a 10g/100ml. Over 5 days that means along with all the doctors and nurses and researchers and drug companies and whichever brilliant bastard came up with the idea in the 1st place 10,000 strangers who could be arsed to go donate blood contributed to my recovery. 10,000 ordinary people who had a needle in their arm and a brew and a biscuit on their lunch break and I can walk again. That’s pretty damned amazing I think you’ll agree.