Well after If…. and But… “So” feels like a good, if unexpected and unwished for, next act. (If you have landed on this blog searching for stuff about MS an important note: The MS bits of this blog are really written only for me as a kind of MS from the front lines report I use to capture and reflect on what it is like to live with this. If you have MS and are looking for reliable information, scant on the web I know, this is not where you will find it!).
It’s 3am in Tayport. Not as sexy sounding as 3am in Amsterdam but then Michelle Shocked went a bit funny anyway so perhaps the less said about that the better. It’s 9 months since my “big relapse(s)” and though I had been hoping this might not happen again for a long time, it appears something is brewing again. I’m up because I woke up with the giant’s hands pressing and twisting my trunk and throat, my legs and left arms misshapen by powerful muscle spasms, and choking on my own saliva and gasping for breath. I’m up. And fine. If irritatingly wide awake. And it feels rather amazing to say that – “and fine” – since the last time this happened I was completely freaked out. Of course back then it happened some way in to a very big relapse that had already reduced me to someone who could barely walk. But still, it’s nice so I’ll say it again: I’m fine. Not worry free – that would be foolhardy. Not being able to count on your body managing to breath properly while you sleep puts a kink in your plans for a restful night. But not overwhelmed by that fear, and able to think about what is happening calmly and rationally – with a clear mental picture of what is happening and why.
It’s interesting how different I feel this time round. Last time I had never had a really acute relapse – one that just floored me (literally on several occasions) for months. Perhaps because I had lived with MS for so long on a kind of steady but slow decline path with flares that were by and large reasonably manageable I was not ready for that and in retrospect I had been really scared of it too. This time as the MS storm starts stirring up the seas around me, I’m nowhere near as in denial or fearful. It almost feels like a challenge I welcome, to see how well I can ride it out. After last summer I have also committed a lot more time and energy to my mindfulness and meditation habit and that seems to be helping with coping too.
The trouble of course with MS is you don’t really know if a flare up is a “relapse” (technically when you get an increase in symptom level that occurs without any underlying infection, which can stir things up but doesn’t indicate any further damage to the brain). And either way as it starts you don’t know how far it’s going to go. Will you be able to carry on reasonably normally or will it floor you? Will there be something new to contend with? And most pertinently of all for me right now – will it mess up your carefully laid plans for the next few weeks/months? I have a busy teaching and project period ahead at work, and a much longed for birthday treat trip to the opera in Zurich (I had to cancel my summer Zurich trip, I’ll be damned if I cancel this one). I am curious to see how much I can balance life (going a bit off the rails) with work and life (joy).
I felt something brewing last month. Subtle things – noticing my computer game performances were getting even worse than usual, a new very slight tremor in my right hand I hadn’t noticed before and which I picked up on when taking photos with my iPhone because they kept blurring due to shake (technology is becoming an interesting tool for tracking symptoms). My fatigue has been getting a bit worse than normal and I’ve had to up the dose of my Modafinil (an anti-fatigue medication I have been on for several years). I hoped it wasn’t something of course, but felt kind of ok entertaining the idea it might be. Then last week the stiffness and spasticity upped a gear and it became clear the game was on: the message rammed home when I felt my voice weakening again, and, at the weekend, the trunk and throat spasms were back.
Coincidentally I had a scheduled check up at the MS clinic at the hospital (a life-saving service which I hope will always be available!) on Friday anyway and found myself talking quite casually, for the first time, about my suspicions that something might be brewing. In the past I would have minimised or glossed over something like this, this time I was happy to talk openly about my suspicion (not fear) that something might be brewing. We talked about controlling spasms – my problem has been that I do not do well on the medications available for that, in fact on the two drugs I have tried I basically went gaga, and not in a Lady way. But as the big problem is the trunk and throat spasms, which are a particular kind of spasm called tonic spasms, and as some of my other symptoms are related to seizures, we discussed trying one of the anti-epilepsy medications that is used also (at a much lower dose) for MS. So I’ll be giving that a cautious whirl I think. And the clinic also offer an acupuncture service to people with MS so I’ll be giving that a whirl too, on the grounds that unlike the meds at least that can’t do any damage. But mainly this time I’ll be using fatigue management, mindfulness and relaxation and a good dose of self talk to see how well I can manage.
Oh, and I’ll be using hope.. hope that the fates let me off with a light one this time. I do not believe that illness is all in the mind (mine in the brain maybe but not the mind). There is a disease course at play here I cannot fundamentally change – scars in my brain are inflamed, signals are going astray – but I can certainly manage how it impacts me and I can ensure I do everything I can to minimise, or at least not aggravate, it. Hope is the big change this time. Not blind faith, but quiet hope. Hope that I will cope well, and hope that I might be spared too big a storm. When you are in denial you are also in denial of hope since if nothing is wrong why would hope be needed? You have to face the storm head on to have hope. This time I am and I do.