Relapsing-remitting MS. It does what it says on the tin. Relapses are to be expected, yet I still feel resentful that one has cropped up now, nine months after the last, and six months after I started a new course of treatment.
There were never any promises that my twice a day tablets would be a magic bullet that prevented any further flare-ups but, if I am honest, that was my secret fantasy. It is expensive and new, only authorised for use by NICE in the summer of 2014, almost exactly as I was being diagnosed. In my mind, this was a serendipitous sign that Tecfidera and I were soulmates and I was going to look back on my relapse of last March with almost fond memories, as the only “real” relapse I ever had, remaining in remission once the miracle potion had worked its magic.
Yes, that is naïve. This is called relapsing-remitting MS because that is what happens. You have periods of remission and, by definition, periods of relapse. And that is the best case scenario. No one can predict how long the remission (or the relapses) will last and, despite obsessive googling, I cannot find a conclusive answer to the “how often do relapses occur?” question. MS is unpredictable, and does not conform to laws of averages. Even if an agreed average relapse rate was out there (and believe me, they are out there, but every one you read is different to the last), this would still be in no way a reliable forecast as to how one individual’s condition might progress.
I considered last year’s relapse as a baptism of fire. Other than losing my sight (my greatest fear), it was about the worst case scenario. I lost the use of my legs and ended up using a wheelchair, albeit for a short time, until the treatment took hold.
This time it is significantly less… significant. The legs still work and, to the untrained eye, I look absolutely no different. The pain in my leg is manageable with a few adjustments in walking patterns and seating position. It is only at night, lying down, when it becomes unbearable and forces me out of bed for some respite. The issue with my eye is an irritation but not affecting my ability to see clearly with some increased concentration. It feels like someone has smeared a smudge of Vaseline onto the lens of my glasses. Except I’m not wearing glasses. There is a dull ache when I have been reading or looking at a screen but, again, a few small modifications in my behaviour can make this entirely manageable.
These two leading symptoms are accompanied by a raft of minor changes, a worsening of the signs that usually indicate fatigue or generally over-doing it. I am struggling to find words. Yesterday whilst being driven home by a friend, I meant to make an observation about “overtaking” a car in front, but the words that escaped were “photocopying the car”! My spatial awareness, already a little dodgy on a good day, is way off. Distance perception is distorted and any attempt to type a text message on my phone is punctuated with the use of the delete key for almost every other word of nonsense that my ill-instructed fingers are tapping out on the screen. The phrase “walking through treacle”, normally used to describe a sense of battling an impossible situation, now has a resonance with the actual physical sensations of walking. Every few steps makes me feel I need to sit down to recover, and standing up for a long time begins to feel like a form of torture.
So that is all the down sides. But the spirit of this blog is to celebrate the positives. And there are myriad positives. I can walk, I can talk, swallow, see, hear, manage the pain… I can receive treatment at the cost of an NHS prescription (and about 12 phone calls back and forth yesterday, but that is another tale). I can, if I need to, leave work early and arrive late, just prioritising my teaching time and managing my workload throughout the relapse whilst being afforded the trust from my school’s leadership that I will do so effectively and without taking liberties. I have a hugely supportive family and network of friends. When I “announced” my latest relapse in a group message to some of my closest friends last night, the immediate response was, “What do you need us to do?”, and I count myself lucky that this is standard. Not that I take it for granted. Those around me are becoming adept at simply sliding into the spaces that are left behind when there are things I cannot do. School runs, childcare, laundry loads, cooking meals – these things are all magically taken care of by my husband who bears the brunt of this extra burden, but you would never hear him complain. He simply does what needs doing, all the while supplying me with endless cups of tea and regular hugs and reassurance.
Yes, this is a relapse. But I always knew it would happen, and with some love and thought, it will pass. As one of my MS buddies said last night, “Relapses are a pain in the arse, or in your case, the hip!”