Please don't kill me!!
I have quite a dark sense of humour. Some say it’s inappropriate and that I should consider the feelings of others, especially those that care about me, and moderate my tone with due deference to the disease that has me stumbling from one handhold to the other, racing to get to the toilet before I disgrace myself. I say it’s tough being a cripple with a rogue bladder and a brain like a duck’s. I find humour essential to getting through a day with MS, and I’m three years along the journey now, so I figure I’m doing okay.
Outwardly, if I’m sitting down in front of a computer, there doesn’t appear to be much wrong with me. I type in a four fingered cack-handed kind of way, pausing as I appear to clarify what I’ve just written with a thoughtful expression across my face.
The reality is I can’t feel my fingers on the keyboard, I make innumerable errors which have to be corrected, I’d be utterly lost if it wasn’t for spellchecker. My thoughtful pauses are usually because I’ve just forgotten what I’ve just typed and I’m re-reading it so I’ve some idea what to type next.
This is exhausting. On a good day, the term ‘good’ being a relative concept, my brain function isn’t too bad, and I can knock out a few pages in a shortish period. My physical symptoms rarely let up, so pain and altered sensations have become like old adversaries that flare up to an almost unbearable level when I start to get complaisant. On a not so good day, finding the right word, or phrase, is like trying to find the square root of the circumference of the planet Jupiter with just a Penguin for help. The Penguin is poorly equipped, can’t use a computer and does not have access to a calculator. Add constant Tinnitus into the equation and any form of long-term concentration is out the window.
A couple of months ago, I was getting set for an infusion of a drug that would possibly slow, or stall the progression of my MS. For information I have Primary Progressive Multiple Sclerosis, usually abbreviated to PPMS because we can’t remember four long words and as far as treatments go, this is currently the only one. I won’t name the drug as I don’t want to overly influence others. Suffice to say, other forms of treatment are available, except they’re not for PPMSers.
Anyway, being a social kind of guy who likes to be prepared for any eventually I, together with my MS team, had taken steps to clarify my safety and ensure my general wellbeing. These comprised the following:
Read EVERYTHING on the internet about the drug
Join a support group on Facebook and Twitter
Discuss treatment with MS nursing team
Contact my GP and get tested for dormant illnesses that could make me very unwell during the time I will be immunosuppressed
Clarify the odds of the treatment killing me!
Clarify the odds of the treatment giving me cancer!
Ask Consultant and nursing team not to kill me (seemed reasonable to me)
I had the above list, scribbled in my notepad for weeks, and was adding answers to it during the weeks prior to my treatment. I’ll admit to being somewhat obsessed. Here’s how things panned out:
Impossible, but had a damn good go. Completely missed a ‘Review site’ of the drug. If it were a Trip Advisor review of a hotel, they’d have shut it down, so no forewarning of what was to come.
Prior to the infusion some useful tips and experiences. Post infusion, unable to comment due to my harrowing near death experience and a reluctance to scare anyone
My MS nurses are brilliant. I love them all
Initially my knowledge of the drug was greater than that of my GP. However, she caught up. She also sent me to a nurse who, for the purpose of updating my vaccinations, injected me 754 times in each shoulder and took 16 litres of blood for testing.
Apparently virtually no risk of death. One fatality in the early trials. A German. I make no judgement.
Apparently 1% risk of cancer. No too bad I thought, but it turned out that was the number for Relapsing Remitting MS, because, hey ….. you’ve figured it out already, for PPMS it’s about 2.5%. Again, not too bad? There are 66 million people in the UK, 130,000 of whom have MS. Of those, 15% have PPMS. Based on this I am an unlucky person. Thought provoking!
Anyhow, my immediate circle of friends and family were incredibly supportive pre and post infusion. I had so many questions involving the words ‘better’ and ‘cure’ and I patiently explained that it was just to slow the progression.
I was enthused at the start but extremely ill for five weeks afterwards. The illness only being interrupted by phone calls to see how much better I was feeling. It’s kind of crushing when you find yourself apologizing for nearly croaking to people who were expecting you to be signing up for the next London marathon. Good job we can laugh😀😀😀.
Ian Daly. Primary Progressive MS