Update From Behind The Shield
It’s been a while since my last post: my apologies.
The last few months have been difficult for all of us. Tens of thousands have died and many more have been kept alive only by the brilliance of the doctors, nurses and staff of the NHS. Countless others, who have not been directly affected by the Coronavirus, have lost jobs, careers or even businesses. Children have had their education severely disrupted and whole year groups have missed exams, proms, and the chance to say goodbye to friends and celebrate the end of one of the most formative stages of life. Most who have suffered bereavement have been denied the ritualistic comfort of the gathering together of friends and family for a funeral. The loneliness of isolation and the stresses of all the above have precipitated a looming mental health crisis that will need addressing with compassion and above all resources. Yes, it has been a difficult time. And all indicators are that it is not over yet.
For my part, I have been shielding since early March. The government gave clear instructions to those of us deemed vulnerable enough to be in this category; basically, stay indoors and avoid all human contact. Unfortunately, the official advice didn’t properly take into account the reality of people in my situation. I have a team of eight carers providing 256 hours of care per week, with Polly stepping in to cover days-off and weekend ‘drop-in’ shifts, as well as support for the carer on duty at night. Each of the eight carers has families, flatmates, friends of their own. Some of the carers travel by public transport to reach me. I am reliant on each carer and their families, flatmates, friends etc adhering to lockdown protocols and social distancing. So far, so good. But, as lockdown eases and a second wave of the virus seems inevitable come the autumn and winter, I remain wary and, it must be said, slightly anxious.
There is anecdotal evidence that stress has a deleterious effect on conditions such as Muscular Dystrophy. This has certainly been my experience. In March I lost my remaining speech and my ability to swallow. My right arm has weakened, which has made controlling the wheelchair problematic. My hearing has also deteriorated. In addition, I’ve damaged my left eye, which has made staring at a computer monitor painful, hence my absence from social media and this blog. I can’t pretend it hasn’t been a bit grim.
However, where there is a will there is a way. Adjustments to the cushion on the wheelchair and a slight repositioning of the controller have mitigated some of problems I’ve been having with the chair. I have my Stephen Hawking-esque speech synthesiser to facilitate communication. Polly found me a clever ‘one-way’ straw that enables me to take the occasional sip of espresso. I can also, carefully, suck certain types of sweets. (I do crave the taste of something savoury though.) My hearing remains a problem, at least until I can consult with an audiologist, although I have bought a DAC (Digital Analogue Converter) which greatly enhances the sound when I am wearing earphones. My eye has improved considerably, despite a failed Botox injection into the eyelid which was meant to close the eye but didn’t. I’m using saline-soaked cotton-wool pads as compresses through the night, which seems to be slowly doing the trick. And, on the plus side, a recent blood-gas analysis indicates that my lungs are functioning better than they have been since the unfortunate events of 2018.
For anyone who is interested, Polly and I are featured in The Guardian’s ‘How We Met’ column this week. The article is 90% accurate. Thanks to Lizzie Cernik for distilling my original blog post and an hour-long Zoom interview into 700 words. The article is titled
That’s it for now. I hope to recommence with this blog on a regular basis forthwith. Thank you for reading. Keep safe.