Well... I love my physio
My last relapse was a doozy. I first knew something was amiss on my daily walk when I pretty suddenly found that at the half-way point I’d start to lift my legs like I was trudging through heavy snow, pulling the legs up at the hip and pounding my feet down hard and flat on the pavement. I found I had to sit down at a bench at this half-way point and I realised how bad things had become by how heavily I sat on that bench. I hit the surface so hard and with such little control that Just Stop Oil started protesting my fracking.
Quickly we realised that the time I could remain on my feet was down to around 30 minutes. I’d cook for a half hour and need Caz to carry the food into our lounge to eat together while I surfed the furniture American Ninja style to get my limp lower half to a chair. With some teary testing we discovered that I could walk fairly competently for about 8 minutes, and move in what was a barely recognisable walk for a further 4, before it took on too many characteristics of a breakdance to be considered safe, or to be considered walking.
I asked for a referral to physiotherapy at the same time that I got my wheelchair. The physio service had a 6-8 month waiting list but I wasn’t disheartened, I’d pushed any hope of improvement from my mind. I had a degenerative disease, things didn’t get ‘better’ they only got worse slower.
I was wrong.
My physio arrived what would become a characteristic 40 minutes late to our first appointment in the weeks before my Ocrevus infusion. The ‘crap gap’ was beginning to find me and my mobility was suffering, while I’d pushed to be able to stay on my feet for closer to an hour to cook that was proving once again too long, and my walking had again become injury bait after around 12 minutes, dropping from the 15 I had once enjoyed. Those extra 3 minutes were pretty magical, I could even walk to the other slightly better local shop, the one with the good chocolate.
The physio did a battery of tests and found that while I did indeed possess legs they were the kind of legs that function better as floatation devices. My balance was in the ‘well you are getting a bit older’ range and my leg strength was between ‘couldn’t break the surface of a puddle’ and ‘they billow like sails during a fart’.
But my physio, yes he’s mine now, was also weirdly optimistic. He just assumed that progress was possible. I was almost laughing at the prospect, that the wheelchair might not always be needed, that I might be able to get… better. Even now I feel like to hope is cursed in this context, like biting my thumb at fate, and I still can’t imagine what it would be like to be able to walk any real distance again.
The physio took me out for a walk today and we walked for 15 minutes and by the end I was typically dragging my legs, slapping my feet down like I’m keeping a line dancing beat. But again my physio was just ‘we’ll build up your stamina’ with casual confidence, and I’m sat there in disbelief like he told me that we’ll just learn to fly.
Yet here I am doing the exercises he has taught me, following his every instruction. It reminds me of the days I used to do martial arts, clashing wooden swords with my close friend under close instruction. If you put a foot wrong, miss your target, you’re at risk of breaking something, often something connected to you, so we took great care to learn every movement with precision and to apply it with care and consistency. Now I’m learning to walk with that same care, lifting at the knee rather than solely the hip, placing the foot down heel first, gently lowering the ball of the foot to the floor and gliding to pick up the back foot again.
And it’s working.
Weeks pass. I look forward to my physio’s appearance, eager to show off my progress. I can now balance on one leg as well as anyone, I can walk on tiptoes, on my heels. My strength is powerful and the physio puts his whole weight behind his arm as a barrier against my legs’ strength, and they can still move him. And now we work on stamina. The physio speaks of starting slowly, walking for just 10 minutes per day, and then over weeks building up gradually.
So I love my physio. At our last meeting he was thinking of discharging me, but I’ve squeezed one more meeting out of him in a month. It means I have one month to build up my stamina, one month to show him what I’m capable of.
Ocrevus has been infused, my shields are raised. My bladder is improving and I’m down to twice daily catheterisation, with the horizon revealing the possibility of maybe getting to the point where I no longer need to catheterise, another dream I dared not entertain until recently. And now we face the outside possibility that maybe, just maybe, I can learn to walk again.
I pull on my headphones, open my door, and I walk out into the cold air.