Feb 22

 Yesterday started out the typical shit show. Exhausted. Sluggish. But. I have had worse. I sent out a message to meet up with my CFS friend at 1pm. We would see if I could do it.

I had something to eat, a bit of caffeine, another nap. And I felt. Better.

Ok. Cool. For the first time in months I have a bit of energy ! I got up to take a shower and immediately ran into a wall of exhaustion. Ok. Slow. Slowly. Take it very slow. Imagine you are nursing a weight behind you. So I slowed right down. Moving gingerly. Like an 80 year old. And I stabilised. Hovering on the edge of exhaustion. But just about on the right side of it. I could feel it poised on a knife edge.

Keep going.

My mood came up with my energy. Ok. I felt like. I could do shit. On a whim whilst sitting in my towel I decided ( of course !? ) to copy my laptop drive. Diseassmble the laptop, hoik out the nvme drive, clone it, pop it back.

This felt like not a big deal.

48 hours ago that felt impossible.

I went out. Spent around 4 hours with my friend. Did not crash out. Felt ok. Fragile. But ok. We talked about a lot of stuff. He actually therapised me a bit. He's a therapist. He had some advice about other people I know with issues and what to do about them. Difficult. Charities can maybe help.

I left there, went home expecting to crash out.

Had something to eat. Stayed up for a few hours more. But crashed out at around 8pm.

Yesterday, in the scale of things, was a much better day. I haven't had a day that good in... months and months.

Today, trying to stick in that groove. I can feel the exhaustion in my bones. Hugging my torso in an odd kind of warm, sore, aching, utterly exhausted embrace.

I am doing my best to try and recreate yesterday. What is the secret sauce. Is there a secret sauce.

I have been here dozens upon dozens of times before. Desperately trying to piece together some pattern. Some reproducible thing I can do that levers me out of a truly shit state. But I think the answer is. There is no pattern. None that is meaningful anyway. The whim and wiles of an immune system that rides up and down.

Today I am struggling. I am fighting hard not to give into it. As if by sheer willpower I can overcome it. Shake it off. Ignore it. Just. DO IT.

IF only it were that simple.

We talked quite a bit about CFS yesterday. He relates to me how it impacts him. How he burns out. Unable to get up from the sofa. And somedays he is better. Other days he is horrible. Up and down he put it.

We talked about the lack of healthcare and support for the problem. The hostility the dismissiveness that still haunts some places. And how difficult it can be for others to understand.

It's a really good thing to talk to him. To relate. Back and forth in both directions. He's a smart guy. A therapist working with severely impacted kids. He knows his potatoes.

Both of us struggle to do work. Trying to work it around a debilitating shitstorm of exhaustion and unwellness. He opined that neither of us should probably be working at all. But here we are.

Anyway.

I am very glad to have had maybe half a day of feeling a bit better. Even if it was fragile. For that short while, the first time in months, I felt within some distance of being a functioning human again. The difference is staggering. Like breathing in a lungful of clear crisp fresh air after living in a swamp of toxic gas. It alters everything. Capability. Coping. Confidence. The weight of the bullshit when it eases up makes such a difference. You forget. You forget what it's like to not always be weighed down. Normal is barely capable. Pressed into a deep mud of exhaustion. Wiggling free, even if only half free, and only for a short while is incredible.

I am going to continue trying very hard today to do everything in my power to put a positive spin on it. Eat properly. Do a little. Stay hydrated. Get a breath of fresh air. Fight against the tugging exhaustion.

I know. In my heart. It wont last. And that I cannot win this just by determination. If the world could be conquered by determination alone there would be no chronic illnesses, no fatal diseases. It is in me that permanent struggle against reality. Force of will versus reality. Stubborn refusal to accept what is. The ever burning need to fix things. Solve the problem. We can do this. Except. I can't.

My friend spoke about how frustrating he had found things recently. A few better days. Then overdid it. Realised he shouldn't have done that. Then crashed. I had hard related this to him the last time we met but for me. How it was a continual mental battle of coming to terms with it. A repeating cycle, a lesson that I seemed unable to learn, or at least, stay learned.

Eh well.

I can feel a heaviness in my bones today. That creeping awful exhaustion. It is terrible. Frustrating. So shit. I can feel it leeching every bit of motivation and capability out of me.

Fighting.

But not I think winning.

Ho hum.