Surreal reality

Somehow knowing MG was rare made this even more unfair.


I didn’t have time to start getting used to the fact that I had a rare, chronic, autoimmune, neuromuscular disease. 

I. Had. A. Rare. Disease.

I kept repeating this to myself, trying to take it in. Somehow knowing MG was rare made it even more unfair. When I allowed myself to really think about it, sometime soon, I’d start to pick apart why that was.

Right then I had other things to think about. To distract me, if I was truthful. It was Christmas the following week. Then our long awaited New Year break. I hadn’t had an actual break from work (either paid work or the many other things I did!), never mind a holiday, since April. Every single day of annual leave I’d taken since had been spent attending or hosting conferences and events for my feminist group. I would very seldom have a Saturday, Sunday or weekday evening off. Until myasthenia struck.

MG had peeled the skin away from my world and exposed the flesh. And it was tender and raw.

I’d joined a couple of social media groups for myasthenics, and had thoroughly alarmed myself reading all the dos and don’ts, information, advice and warnings about what to expect from this damned disease. The one thing that stood out for me was that stress and anxiety must be avoided. Apparently it had the power to exacerbate symptoms, and even bring on a myasthenic crisis. I learned what was meant by ‘crisis’.

Myasthenic crisis is a life threatening medical emergency caused by weakening of the breathing muscles resulting in severe breathing problems and requiring intervention using a ventilator

Being somone who had lived an edgy life for various reasons, the notion of living the recommended ‘placid’ lifestyle seemed not only difficult to achieve, but undesirable and boring!

Writing this, it occured to me that my blogs were sort of converging. My other blog was very much focused on the things in life that got me aerated. Violence against women, domestic abuse, child sexual exploitation; these were the things in life I was driven to fight against, my personal crusade. My own experiences of all the above gave me the passion to keep opposing them. My lifelong quest to learn more about these subjects, and my more recently acquired professional knowledge had given me the vocabulary, contacts and an innate understanding of the issues. I tended to use that blog as a soapbox and poured fury and outraged indignation into it. In fact, I named it Ms Soapbox! This blog was becoming more confessional.

The crossover centred around my transformation from victim to survivor, to thriving. During my survival years I did things that lent shame to my progress. I self medicated. It felt like I was living a double life at times. I functioned well, at least on the surface, and in between total nervous breakdowns. One thing I didn’t do, could never do, was relax. I mean never. I was constantly uptight and in a physical state of alert. Hyperawareness was the technical term for it, and was commonly a problem for people with PTSD or Complex PTSD, people who had survived significant trauma or systematic abuse. The amygdala activated and sort of permanently switched on the fight/flight/freeze/flop/friend response. I spent years unable to unwind, and self medicated so I could try to sleep without nightmares. I only managed to give up those particular crutches after becoming extremely ill a few years ago. 

And now, when I had probably more reason than ever to be anxious, there was nothing to help. I couldn’t pop a valium or smoke a spliff. There were so many medications that were quite dangerous to someone with myasthenia. Antibiotics, sedatives, muscle relaxants, and many more. The list was extensive. The irony didn’t escape me; so long spent unable to wind down and turning to aids to help. To this; teetering between the partial, physical paralysis that came and went, and the urgent need to stay calm. It was almost comical. Or hysterical, I couldn’t decide which.

Seeking answers I decided to try something a close friend suggested. Meditation was a practice that appealed to me. I had tried it quite recently, dabbled really. Years ago I dismissed it fervently. Me, meditate! No, it wasn’t for me, I didn’t do relaxing.

There was a lot at stake now. My life literally depended on my ability to maintain an aura of calm. Turning to guided meditation I started to create myself a ‘zen zone’ where I  could immerse myself in peace and serenity. It seemed to have the desired effect. I was remarkably unfazed by the momentous change in my life.

Or, I was in denial. Maybe I just couldn’t accept what was happening to me. It didn’t feel real. I’d have moments when I woke up in the morning and would momentarily forget. The remembering was harsh. Every time, it was like a blow to my abdomen. 

I found myself hesitating to tell anyone how I felt. My family were scared when they thought I might die. They were relieved now they thought it was all much less threatening. After all, Dr D told us MG was curable!

I couldn’t steal their relief.

This was mine to deal with. For now, at least.

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