I refused to identify as someone who was disabled. Or to become disabled. What was the definition of disabled anyway?
Definition of disability under the Equality Act 2010 (UK)
“You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.”
My diminishing ability to do things for myself was temporary, in my mind. This was compounded by the cruelty of MG retreating most nights only to reappear during each day. I didn’t ever forget anymore. That was impossible, with the meds and alarms and thoughts of Thelma and Ted. But I was still firmly in denial.
I thought I was making myself worse. I couldn’t seem to resist trying to do most of the things I had crammed into my life before MG. Every couple of weeks it caught up with me, despite making sure I slept for 9+ hours a night, then having a night in, followed by another, and another. It never seemed to be enough though.
The frustration bubbled away beneath the surface, as I pushed myself to keep up some semblance of normality. I was gradually doing less and less at home, to enable the keeping up of appearances outside. The payoff increased week on week, as I struggled to maintain my ‘public’ life as others knew it.
The list of things I could no longer do for myself “reliably, safely or securely” (the Department of Work & Pensions baseline for judging claimants right to benefits), got ever longer. Forget personal grooming, I could barely wash myself. Even putting on moisturiser with my temporarily paralysed fingers each night was ridiculously difficult. Cook a meal? Not if I wanted to keep my fingers. Walk to the shops? Maybe, on a good day if I walked extremely slowly and the shops were only yards away. Housework; pah! Nuh uh. Not even a tiny bit. Typing, writing, carrying a hot cuppa, doing up buttons. No, not happening. If I didn’t have the bingo dabber thingy for my phone, I wouldn’t even be capable of bashing out this blog, with it clumsily grasped in my fist like a baby holding a teething ring.
As 2017 stomped towards spring, my ability to speak became more compromised. I found that most evenings, particularly after eating, my speech became slurred if I talked for more than a few minutes. This turned out to be quite inconvenient on Mondays as I was on the rota to co-present our radio show almost every week in March. Even though I took the role of ‘driving’ (pressing buttons and faders) and limiting my speaking part, my friends had to standby to take over my part every time my voice started to slur. When my speech began to sound nasal too, I really got self conscious. I couldn’t bear to listen back, as I usually did to help improve our performance.
Working became more impractical. The time of day my fingers gavecup got earlier each week. When my voice started to fail me during the afternoons too, making phone conversations awkward, I realised I was really in trouble. Having only a temporary maternity cover contract, it wasn’t difficult to agree with my company that the time for it to end hadcarrived naturally.
Once I processed the initial panic at the notion of not being a financially independent woman, something that was incredibly important to me, I was relieved. I had known for weeks that I wasn’t fit for work. The prospect of being able to focus my time, attention and energy on my health was welcome.
My appointment to see the thoracic surgeon popped through the letterbox. I was already aware that to be able to have a general anaesthetic I needed to be a lot healthier than I was. I’d read about the specific risks to myasthenics. Any muscle relaxing or sedative drugs could cause my breathing muscles, my diaphragm, to fail. Consequently it could be harder to restart voluntary breathing after extubation. As my breathlessness had resurfaced, I fretted that the likelihood of having my thymectomy any time soon was getting more out of reach. And it had become my lifeline, my beacon of hope. I needed the operation.
I fantasised about getting my life back. Whilst I knew it might never be possible to resume my pre-MG life entirely, or advisable even if I was fortunate enough to go into remission, I still yearned for the freedom of before. I wanted to go out dancing and quaffing prosecco and cocktails until 4am with my best friend. I wanted to go on holiday with my beloved and spend all day walking around beautiful ancient cities. I wanted to be able to fully enjoy my only daughter’s wedding in six months and not look like I’d had a stroke in all the photos.
I tended to try viewing most experiences as having an upside. If not immediately, then certainly in retrospect. This was a biggie! So far, the only positive I could take from it was that I believed karma/the Universe/whatever was pointing out that I was on the wrong path, and part of finding my way to the right one should involve hefty doses of self-care and being kind to myself.
As I pondered reinventing me, creating a life of nurturing, forgiveness and self love, I started to wholeheartedly look forward to finishing work. I thought of lazing in the park, herbal teas in the garden, meditation and napping whenever I felt the urge.
I also tried not to think of what Thelma and Ted might be doing in my chest, as my appointment with Mr C the cardio thoracic surgeon loomed closer.