Tedious illness

Was this it? Had my life become just a veneer of overbright colour that I hid behind? I was paddling wildly but nobody could see.


Straight away the latest from Dr D created jagged edges in my relationships.

Whilst I was fairly certain that I was being remarkably positive, on the whole, the ‘symptom free, possible remission’ had distinctly different meaning for others than it did for me.

In the car (again, isn’t it odd how so many difficult conversations take place in cars! No escape, no surrender) and my husband announced,

Well, that was more promising, wasn’t it?

I was literally without words. I stayed silent the entire journey home. 

I needed to take some time to digest not only what Dr D had said, but what my husband had taken away from the conversation. He’d resisted taking in any more information than that which Dr D has provided for the last three months. Anything I’d tried to impart didn’t seem to have any impact. 

At home our silence quickly deteriorated into bickering. He snapped at me, I bit back. In an instant it escalated. It was disproportionate and for a moment I almost reacted in my default mode; defensive anger. But, always at the periphery of my consciousness was the worry that getting wound up and emotional might trigger a myasthenic exacerbation. So I settled for retreating.

I took myself off upstairs and decided to camp out in our spare bedroom. A lovely room, I’d taken to meditating and napping in there occasionally because being at the back of the house was quieter than our bedroom. I fet an urgent need to calm myself, regroup and process the information from Dr D. This needed all my attention. I had none to spare for working out things through with my husband yet. It briefly crossed my mind that I was being selfish. Closely followed by the thought that I cared more about nurturing myself in that moment than whether or not I was being self-indulgent.

I engulfed myself in the puffy quilt with a glass of wine (I know, I know, not so much self-caring as wallowing!). Sipping it, I took deep breathes and focused on getting to my zen place. After ten minutes or so, I felt calm enough to try meditating.

No. I simply couldn’t get into the zen zone.

Picking up my laptop, I looked at my new blog. I’d started writing it in December around diagnosis day. It was an outlet, a way to expend all the pent up emotion generated by being walloped round the head and body with myasthenia. 

I’d only published a couple of posts so far. There was another in draft. Opening it and reading what I had written, I decided to finish it. After just over an hour of furiously typing, with my right fingers getting less and less responsive, I hit publish.

I was still emotionally coiled up, almost poised like a big cat stalking prey. I hadn’t eaten. I’d almost missed my team presenting our radio show! So, I took a break, grabbed a snack and listened to my friends putting feminism all over the airwaves. They never failed to make me laugh. 

It worked like a pressure cooker valve. Some of the tension leaked out. But not all. Not enough.

Back to the blog.

I starte another post. The writing of them started to take on a purpose. More than an outpouring of emotion, they were becoming the telling of secrets. The readers, if there were any, my confidantes. The now almost frantically typed words were the only real truth I was telling anyone. The blog had become my confessional, the one place where I could let my mask slip and forget about being positive for a brief spell.

I finally settled to sleep, saving the last few sentences for typing during my morning commute.

Was this it? Had my life become just a veneer of overbright colour that I hid behind? I was paddling wildly but nobody could see. Engaging in a repetitive daily battle to carry on as usual, while trying to adjust to the ever changing landscape of symptoms. 

I seriously needed some of my nearest and dearest to start understanding what was going on here. However much I empathised with their desire to avoid my reality, I was running out of time and patience. I had no desire to exaggerate the situation, and I feared any attempt to impress on them how dire things could get might be taken as over-emphasis.

I was starting to wonder how long I could maintain ‘normality’. Almost four months into this limbo and I was running out of fortitude.

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