The beginning of March is a milestone for me. It has become my end of winter, the real beginning of the year. In the UK we have four seasons but for this long term multiple sclerosis ‘sufferer’ there are only two to three seasons. My calendar is shaped by my elective treatment and my need to squeeze the last of me, to poke me with a stick and watch me yelp. Well, sort of.
Read my blogs, I take an unconventional patient pathway for MS. Three times a year for over a decade (with a short break for bad behaviour) I have hooked myself to a steroid drip. The evidence behind this is weak in many ways based on a old Italian study and some distrust by me and my then consultant on the structure and execution of original interferon trials. A ‘cure’ looking for a disease a friend once joked to me. This blog is not a critique of trial design for long term chronic conditions (is two years data really enough?) more of a social observation of how we are shaped by our treatment.
Winter, spring, summer, autumn, Vivaldi’s inspiration and how most people unconsciously mark time. I, however, have unconsciously divide my life into three; March, July, November. In the first week of each I head towards my local NHS trust for my choice of elective treatment. I have been doing this for over 12 years. My life quickly became organised around it including work. Well almost. There was one ‘famous’ occasion when I had to present to a board pretty much off my marbles but no one died and the fact I did it in iambic pentameter still gets talked about today…Plus the time I ranted at my boss for so long his first words when I took a breath were “go home”. Actually, I might not have been on steroids for that one 😦
The point remains. Multiple sclerosis changes you (obviously) but the treatment as much as the condition. The rhythms of a ‘normal’ life become bent, your life out of shape. Every treatment has side effects which themselves must be treated or at least managed. Doctors understand disease, the difference between acute and chronic. Even if they can’t feel your pain they can see it. What they can’t do is see your life.
And my life has changed again. I suddenly realised I don’t even have three seasons anymore. Steroids have complications and I have a number of co morbities anyway. As such I exercise, perhaps to the point or close to self harm but then I have to run. Not to regain my lost youth or to remind me of the man I was before MS. That man was pretty much an unreconstructed w*nker. I run because as my lungs burst I am reminded that they still can. That has meaning.
So before every steroid session I run a race. This year the Milton Keynes 10k (just gone), July the York Tri then before November the Great South. I have noticed that July no long registers the way it does, only March and November seem to. Because March is when the mornings begin to lighten and November when the evenings disappear. March is the first race of the year, November when I bind my wounds and look for a long winters nap. I only have two seasons now; light and dark.
Managing MS and my decline, managing the co-morbidities and the regime to counter the worse effects of the treatments means my life is now governed as much by run routes as formal patient pathways. But they are all intertwined. I need three steroid sessions, two opposing seasons but just one wish. To be allowed to be the patient I wish to be.
And 42 minutes 26 seconds at the Milton Keynes 10k. Fuck you MS.