Well what goes up must come down, and down I did. Of course I “knew” about steroid crash. You can’t pump 2500mg of corticosteroids into your body over 5 days, stop cold, and expect nothing much will happen. And I don’t have a great history with drugs that cross the blood-brain barrier, having had bad reactions to the various antispasmodics I’ve been given over the years for my spasticity. So, if I had known then about what would happen in the c. 48 hours after stopping, would I have made the same decision? Well, yes.
The first few hours after stopping I coasted along in the beautiful high those 5 days gave me, marvelling at the amazing insight into what it would have been like to be me if I hadn’t developed MS all those years ago: free of pain; free of worry about falling, or not getting to the loo in time; free of being seen to have “a problem” or to be “limited”; and best of all, free of “cognitive fog” (since MS is the disease that likes to keep on giving it’s only too delighted to slow your thinking as well as your moving). But then it started, a subtle realisation that my new toy was a bit crap, probably a knock off. The tingling crept in first, then the tell tale tightness in the leg muscles. Next the dizziness came back, nowhere near as bad as before, but disappointing all the same. Life without feeling drunk the whole time was very pleasant. But my mind was still bright and though I was aware this was “the crash” I thought I was going to ride it out pretty well. Another few hours disabused me of that fact well and truly. The bit between then and now is not that clear though there are some things I am glad I did not do:
– I am glad, for the sake of the lovely paramedics dispatched round to check me when my throat began to tighten frighteningly in the middle of the night, that my mum’s enjoinders to always wear clean underwear in case you need the ambulance paid off
– I am glad I didn’t grab the clippers and shave my hair off when the “skin pain” was it its worst and I “reasoned” that if I couldn’t take my skin off I could at least shave my painful hair off
– I am glad that when I collapsed during an extremely ill advised shower while alone at home, I didn’t have to shout for my lovely neighbour to come rescue me; we’re both gay, neither he nor I could have coped with the shock of that encounter I suspect!
– I’m glad I didn’t chuck my iPad through the window when the pain became so intense it reached my teeth and then my eyeballs and denied me even the distraction of watching something shitty Netflix movie.
Waves of emotion, rational and irrational, reduced me to a whimpering wreck. I wept for my mummy. I wept for me. And I wept because the tears soothed the pain in my face a little. But like all storms at sea, sooner or later it begins to quiet. The pain receded to a dull ache, the spasms settled back into an old familiar feeling of being a bit “bruised”, the dizziness became comfortable again. Then finally, blessed exhaustion, the body’s way of saying “There you go, have a wee rest pet, you’ve done really well.”.
So where am I now? I can walk better than I could at the peak of this relapse, but a little worse than before the relapse. That will probably improve over the coming weeks. I won’t know for a while. But what has changed completely is my sense of where my challenges lie. For so long I’ve used worrying about kids, or work, or money, as a way to distract me from what I am of course really worried about. In these last few weeks I’ve come as close as my 22 years with this disease have brought me to a wheelchair and though I can’t say the prospect is any more appealing, for the first time I feel that if it happens I’ll cope. In fact if there is one thing I have learnt, one reason I don’t regret all this, it’s that I realise now I really. will. cope.
I’ve lived with this strange mixture of concrete limitations to my present and abstract “limitations” to my future for a long time, but for the first time I accept that my attentions must be fully to the concrete present. Changes need to be made. Things need to be faced and dealt with not avoided. There will be some ironing out of the “benefits and costs” of this experiment with steroids to be made. Rehab begins tomorrow with the dreaded physio at the hospital (they deal with way too any MSers to accept shirking). Work will need to be picked up again, chores around the house resumed. Pride will need to be swallowed as the occupational health are on the way to advise on disabled showers and grab rails and assorted other badly designed and ugly products – sensibilities will need to give way to sense. The prospect of all of this has loomed for a long time, but denial is one of my special talents. What the last few days have given me is the resolve to stop looking up in the vain hope I can avoid looking right ahead of me. In some way writing this is probably part of that, pinning colours to the mast etc.
What I didn’t know a few days ago when I started out on this journey was that it really is a one-way trip. It always was of course, it is for all of us, but I let fear and stubbornness and pride and work and all manner of “stuff” obscure that fact for many years. In my lowest moment, I was not thinking of the things I own, or the job I do, or the things I want to “achieve”. All I could think of was how very, very much I wanted to hold my kids, to walk again in my beautiful Tentsmuir Forest, and to see if my nasturtiums had bloomed yet. I’ve stopped worrying about getting back now and I’ve rediscovered the bit of me that always did love journeying into the unknown. I see now that I am going to be too busy in the present to worry about upwards anymore, onwards will do me just fine. In fact, onwards sounds really great. Onwards… with hope, and clean underwear.