A morning with ME

I wake, I think. At this point it is hard to tell. I am lying on my front with my head pointed towards my bedside table. I try to lift my head to see the clock but I can’t. I fall back into semi-consciousness and doze for a while. It’s better than facing the pain.

I stir again. I still cannot lift my head, but my arm almost works. I reach for my phone. 9:20. I have had maybe five hours sleep. A good night. I notice the tweetdeck symbol. “5 messages about me.” I click to see them but consciousness deserts me and the phone falls out of my grasp.

10am. I wake with a start. My clock is beeping, its simulated sunrise glaring in my face. It did not wake me slowly, instead the beeping alarm hits my skull like a road drill and the sunrise light burns my eyes like being next to a real sun. My phone alarm joins in. Beep beep beep beep THUMP THUMP THUMP THUMP. I try to reach for the alarm and eventually hit the button. The phone is next, and I manage to swipe the unlock pattern on the fourth try. Then I attempt to turn over. Pain hits every part of me. Crushing weight bears down on me. I shove against the bed as hard as I can and drag myself on to my back, my legs following almost lifelessly. I gasp in pain and fall back on the bed.

Blank. Then wake. The sunrise lamp still burns me. I reach for it, managing eventually to hold the dimmer button until it goes dark.

Pain. I remain awake though, so I reach for my phone and load tweetdeck. I cannot speak, can barely move but the digital world responds to me. I can manage to type messages and feel connected to the world that way at least.

The cat wakes and walks over to me. She purrs loudly. I try to stroke her, my arm falling back to the bed. The cat is not happy. She headbutts my hand several times in an attempt to get more attention. Then, horror, she pushes me with a cold damp nose. I have no energy to wipe my hand. The cat leaves in disgust.

My wife comes in to the room to see if I am awake. She asks if I want coffee. I cannot answer, my words won’t form. I know what I want to say, but have no strength to say it. I answer, but too quietly. I try again. “Yes”, I manage to force out. As she leaves I remember my painkillers. I sit up, with huge effort. My legs still won’t follow. Packet. Pop out pills. They won’t go. I summon more effort. It hurts, but the tablets emerge from the packet. Glass of water. Am I holding it tightly enough? I manage not to drop it, and swallow my pills.

My wife comes back with my coffee but I have fallen back on the bed. A few minutes later I find the strength to pick up my phone and reconnect with the online world. I try to reach for the coffee but I can’t sit up enough to drink it. Eventually I manage to sit up enough, and even to adjust my pillow behind me. I drink the coffee.

I think about how a healthy person must view me, how lazy they would think I am. ME? Load of rubbish. Snap out of it and get a job you lazy bastard! I decide that I must write this narrative. Perhaps I can raise awareness of the reality of this crippling disease, change a few minds.

And so, I type this, my phone propped on my chest, my head barely lifted by my pillow. My legs scream at me in pain. My hands tingle with pins and needles, too much typing, held in one position too long. My wife brings me a coffee refill but I feel too sick to drink it. Time for unconsciousness again, I hope.

Broken

Not enough sleep. Out of bed, showered, dressed, collapsed.

Nothing new here then.

Sitting here at my desk, feeling the weight of crushing fatigue literally forcing me down on to my desk. My brain in a weird state where I can’t think properly, can’t complete half of my thoughts, can’t finish spoken sentences and yet I can type my thoughts here at only a slightly reduced pace. I am not coherent enough for proper work, yet can still sit here fiddling with WordPress. Am I achieving something? Who knows. Perhaps I should be compared to a drunken programmer on a Friday night, typing rubbish yet thinking it perfect.

I should go back to bed but in this state I won’t sleep, merely toss and turn.

So I sit here at my computer, too zoned out to engage with the world. No concentration. Too broken to work, too broken to sleep.

M.E. and CFS

Fucking up my world since 2000.

There’s a hole in my ****

Readers of a sensitive disposition should not read this!

A friend of mine had a hernia recently. In the spirit of having holes in things, and so as not to be left out, an old anal fissure of mine decided to reopen. (An anal fissure is a hole in the side of the anus.) One fissure wasn’t good enough though. No, this time I had to have two, one front and one back. That wasn’t good enough either, so one of the fissures got infected and formed a perianal abscess. The abscess formed a large swelling which made it painful to sit or walk. It was under control using antibiotics at first, and in fact went down so much that I felt ok to go to Greenbelt festival.

Greenbelt was lots of fun but while I was there I started to feel more and more pain, until Sunday night where I had an immensely painful time walking back to my tent. The abscess had returned with a vengeance and was twice the size that it had been. By early Monday morning I was in so much pain that I was screaming out loud and scaring the rest of the campers.

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