In March 2014, I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). This means that my MS has periods of being very active and causing a relapse where new symptoms start or symptoms get worse. Usually, a course of steroids help and things get back to normal for a while.
In December 2014, my neurologist told me that my RRMS was aggressive (I know! Me?! Aggressive?!! Never!) and I’d had 3 relapses in 9 months which is quite a lot. To try and slow things down, we decided to try a course of Disease Modifying Drugs (DMD’s) which are designed to reduce the number of relapses. With less relapses it’s hoped that I can get stronger in between them.
The DMD of choice for me is Tysabri. It’s an infusion that I have to go to hospital for every 28 days. They just pop a cannula in your arm (or attempt to use your hand twice before they give up as per this photo) and you sit there and read your book, drink coffee and chat for the next hour and a half. It gives me a hot rash and makes me incredibly itchy, mainly on my scalp, but a simple Piriton tablet deals with that.
And that’s all there is to it. I get very tired for 2 or 3 days afterwards but then I have 2 or 3 weeks of increased energy and my brain becomes a lot clearer and I can think clearly and try and plan things. A week or so before my next infusion is due I get very run down and tired and the whole cycle happens again. My next infusion is next Tuesday and so far this year, I have had no relapses.
So where do the unicorns come into it? Blame my mother! This was our text conversation:
As you can see, my Mum is full of sympathy and pity for me. So each month, I have this infusion and hope that I will one day become a unicorn with a mane of rainbow hair and sparkles. So far, it’s not looking great but I live in hope!