Nov 16

 Today I needed to get some groceries.

I am out. Unsurprisingly. Given how shit I've been lately and overdoing it on Monday.

Take it easy. Pace yourself. Try to get some sensible sleep in.

Uh huh.

Today has been diabolical.

This is another lesson - which I don't need, I have plenty - in how pushing it does not work.

I felt terrible on waking this morning. I tried pacing myself. Even taking a shower was hard work. Bad. When I can't even shower without flickering into meltdown. I skipped washing my hair. Too much. I needed to sit down. Lie down. Feel better. I slumped on the side of the bath. Literally gasping for air. Oh buddy.

Take it slow. Sit in a towel. Try to let everything calm again.

And then through gritted teeth I got dressed and went out. And felt absolutely awful. A haze of illness and pain. It's hard to describe. I spend so much of my concentration on not flaking out. I am only half aware of people. Driving is a little easier. The car does all the work. Wind down the windows. Chill air.

I walked around the supermarket in a daze. I can't be in here for long. I can't do much. It's ok. Just get the minimum. Tea. Milk. A few bits. Leave.

I felt so awful.

I made it back. Exhausted. Badly needing to lie down. Sleep. Kicked off my shoes. Jeans. Slumped. A whirl of illness and nausea.

Very bad.

I cannot push. In such circumstances pushing it just doubles down on the awfulness. Makes it worse. Prolongs it where I can't shake it off.

I curled up into a ball. And slowly fell asleep through that haze that would not shift.

The afternoon has passed. The awfulness has retreated a couple of steps. Now I just feel. Rough. On the borderlands. I have got up to make a cup of tea. And get something to eat. The first things I have been able to look at without feeling sick.

Mentally some inner watcher looks on with a grim sense of doom. Very very not good. You are barely functional. How are you still on your feet ? What is wrong with you ? Why are they so shit at being able to help ? Slipping between the cracks of what they can easily determine perhaps. You are. An invalid. No question.

If I can take a long break. If I can manage myself to get to a peak. Arrange my time and response to cater to my awfulness. Then. For some moments. I can go out. Do a few things. Return back without too much damage. But there are so many caveats and guardrails in there. I am like the frailest of flowers that will wilt and die if you so much as think of putting it in the wrong corner of the room.

And.

Today. It is clear.

I am a lot worse.

I have got a lot worse.

It isn't plateauing out. It is degenerating.

I have already come to the conclusion that I can't do surgery again. This is it. I am at my limit. Whatever bad things might happen in a future, I no longer have the capability to do fuck all about it. I am backed into a tight corner. I am already doing my absolute best to nurture what little fucking energy or glimpse of wellbeing I have. Options and possibilities and oh you could do this, or that are long gone.

Perhaps really this is just the shadow of the CFS. I do my best to manage it. And continue to treat it with contempt. But. It takes a heavier toll than I like to think. It does put me flat on my back. It does cut me down. Like those poor fuckers you see who can't get out of bed ever. I fight and rise and struggle before collapsing back. I won't go easily. I hate it. But it is there. Whether I like it or not. Whether I choose to treat it nicely or not.

Hum ho.

And yes. It goes without saying. None of this is worth it. At all. I don't enjoy being out. I don't enjoy the drive. I don't enjoy pootling around a supermarket. All of it. Is teeth gritted. Mask on. Desperation. There is no time no sliver of light where you can take a moment and smell the roses. It is about reaching from one desperate hand hold to the next, climbing over a river of lava. Survival.

The late Autumn sun disappears early. Very late afternoon, darkness descends. I have a measure of shit stability. I am thankful I am not as bad as I was earlier. A horrible sense of foreboding sits in me for how the fuck I am going to deal with tomorrow if I repeat how I was today. I hope to hell I have a better day. That the winds of bullshit give me a break. That I can be perfect in my approach to it, avoid any hidden pitfalls. And just cross my fingers. What a blessing that would be. If I had a window on Monday where I didn't feel awful. And I could just get on with the hospital appointment like a normal fucking person.

All of this has made me reconsider work again.

I can't even fucking make cups of tea. Can't even get groceries. Let alone sort out shit at work.

I don't know how that would even work.

I Suspect - as I always do - that surely it can't go on like this for long. Surely something breaks. But then. I am continually amazed by my capacity to just fucking stick it out. A dogged refusal to lay down and die. Not a conscious one. The conscious one is semi permanently plotting ways to just die. But the subconscious one. The animal. Refuses to give up.

In many ways it would be nice to have a final date. You are going to die on X. At least. Then. I could know. How much money I need. What I can do by when. It would make it easier.

Anyway. Here we are.

Another fucking day of horror that has eased out into being just kind of shit. Bearably shit. And I can already feel my memory scrubbing out this morning. Pretending like it didn't happen. That wasn't a nice experience. What experience ? It was just a fever dream. . . .

From another point of view.

Whatever is going wrong with me. One thing. Many things. Immuno issues. It is fascinating. Something in the machine is way off kilter. No harmony. A collision of dischordant rhythms. I wonder how it breaks down bit by bit. Always the problem fixer. The puzzle solver. The debugger.