I think it’s week nine of lockdown. I moved into my parents home fairly early on in the process because of the blatant risk present from my carers. They had no PPE, it wasn’t even being talked about, let alone the subject of testing, so if any one person they saw was carrying the virus we would all catch it. Sadly, due to the huge death rates recorded in care homes, media and thus political attention started to turn to social care. I chipped in to a few tv and radio interviews to hammer the point, but it’s really terrifying how long it took for the risks of social care to get on the radar, and the focus is still heavily aimed towards care homes.
In general lockdown life is not so different for me, and it’s been massively comforting to hear this screamed by disabled people from all corners of social media. Not being able to go where, or do what I want is a permanent feature of my life, so frustration and isolation are inevitable. My approach to coping with it in recent years has been to have regular holidays booked, so there are always a few days of escapism on the horizon. So having had some of my favourite bands perform YouTube concerts, being able to view theatre shows online, or simply having friends and family all catching up virtually has been great. One of the weird pleasures of the last few months has been simply feeling the same as everyone else. Disability is inherently lonely because most people aren’t disabled. There’s always a separate way to enter a building, a different queue at events, or a unique booking process. It’s generally impossible to blend into a crowd. But recently we’re all in a similar situation, with government advice relevant to millions of us; of course I’d rather the cause was different, and I know the universality will soon change, but for now it’s been nice.
The one massive negative I am facing is the physical impact of all this. Two months without physiotherapy, swimming or yoga have really taken their toll. I have attended and paid for weekly physio at the Hertfordshire MS Therapy Centre for years. The combination of specialised equipment and staff who can deal with the stiffness and weakness of MS is hard to find. Pre-lockdown I’d also been receiving an NHS course of physio, specifically as rehab to regain some of the strength lost last year, but I know the progress I had slowly started to build has dissipated. It’s not something I can do by myself, both my physio and yoga teacher lift my limbs to pull and stretch me. I’m thankful for the electric bike which I wrote about in my last blog, still on grant, which I’m using every day, and I’m doing what exercises I can, but it’s obviously hard to work my whole body. I am so very envious of people who can go for walks or bike rides to maintain themselves. I can’t remember the last time I had a full night sleep, it was at least six weeks ago; the spasms in my legs are waking me nightly, leaving my legs painfully curled up. I have intermittent cramp and reduced movement in all but my left arm, and the shaking clonus in my legs is regularly unbearable. The MS Society put me in touch with a journalist from the Guardian who was making a series of ‘less visible’ problems caused by lockdown. Of the many clips I filmed for him, it was my grumpy account of yet another bad night’s sleep which made it into the final cut, so I guess it’s a valid complaint.
I suppose I’m often quite negative about the little exercise I can do, finding it hard to believe that it’s making any difference. I can at least say now that it does. The longer this goes on, the more fearful I am that my return to the swimming pool will be cataclysmic – I’m going to swim with floats, and very near to the edge for sure. I can’t even be certain that I’ll have the ability to function in my flat on my eventual return. Shops and bars reopening mean little to me, but I can’t wait to feel the feedback from my muscles post exercise and quieten the panic that my limbs are withering. Mostly, I can’t wait to wake up after a solid night’s sleep.