Tory Majority Day 76: The Realisation Of The Limitations Of Having MECFS

It’s become obvious again: that this condition, this illness, this disability steals your life, your health and your choices.

I’ve been having obvious spikes in symptoms over the last month. It’s not that I was well before the last month, honestly I wasn’t, but today I realised that before pressing the big red button to find somewhere new to live I was, at least, stable.

I didn’t light up any fires, most of the time I lived securely in a pattern that was true of me every day. I’d have energy when I woke up, I’d usually spend most of the day doing my own thing, on my own, not speaking to people much except the odd phone call or a trip to the shops when hearing my voice speaking out loud thanking people for change sounded incongruous. I was content with that, I still felt I had a life even though it was radically different from the one I had before I became ill.

Then in the evenings my friend would pop round for tea and supper and we’d watch a film or tv.

Once a week I’d see my counsellor, Crystal Tipps, and in that 50 minutes I’d do more talking than any other time in the whole week.

On Wednesday’s I’d have lunch – a treat – with my silver surfer Dad. Sometimes that would mean a car ride with him to a nice restaurant or pub for lunch then I’d crash out exhausted but happy afterwards.

I’d blog, I’d email, I’d Tweet.

I didn’t really have a social life, that disappeared over 18 months ago when I found the fuse of energy ran out before dinnertime and my friends fell away with it. Evenings would be entirely alone if it wasn’t for my friendly visitor. If I socialised it would be during the day. Thankfully those friends available during the day are around still.

I’d make my own choices about what I did on most days and that would be the way I’d manage my symptoms.

Today I woke up after a nap in the afternoon. I’ve had to start sleeping in the afternoons again to deal with my exhaustion. Before pressing the big red button I could make it through the entire day without sleeping. Now it’s become a pattern again.

Yesterday I had to go to my Dad’s to do some things in the new rest room and I spent all afternoon in it, stretched out on the sofa, alone, thinking of nothing much and resting. I do this all the time at home but when it’s in someone else’s home, suddenly the truth of that long absence in an afternoon seen from someone else’s eyes makes it an uncomfortable truth.

I have no energy to think about tomorrow. My thoughts are fractured, elusive and incoherent.

The length of time in the mornings that I’ve got before I start to feel tired is shortening like the Autumn daylight hours. Is that why my symptoms are getting worse? I have real problems with the cold.

I’ve faced up to it again today. That instant when you face it squarely between the eyes.

This illness is an illness which steals you from you and everyone around you. I’m feeling more a more limited in every passing day.

Oh I’m optimistic, I’m happy, I’m content, I’m not in a bad mood – but I can see it’s here today, like a visitor you’ve forgotten about over time coming to stay with you again, changing your home life, how you think and behave, slowly and incrementally settling in and making themselves unwelcome.

© Lindy 2015

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