Mar 13

 The last few days have been a battle to maintain positive direction. To keep the slow improvement of health on a roll.

But. Really. For all my "battling" it's not really any such thing. It's more like denial that it's going backwards again.

I refuse to believe it when that rise turns into a fall. When the day wobbles and I start feeling worse.

No. Nope. Just. Tired. Just. Need to do X. Y. Just a small dip. Be fine tomorrow. It's fine. No problem.

And the next day is more of a struggle.

Nope. It's ok. Fine. Let's keep doing the positive things. Make sure we eat right. Hydrate. Get some exercise.

But it doesn't care. It doesn't care what I do. What my routine is. How carefully I pick my path.

It drags me backwards. Unwilling. Kicking and screaming.

And this is the bit where again, I struggle to accept that I have a serious fucking illness. A chronic condition that never leaves, that fluctuates, but always leaves me in a compromised state.

The physical side is beyond shit. The mental side is no cake walk either. It's hard.

Today after a few days of dragging me backwards despite my best, my CFS, or The Bullshit kicked in super fucking hard. I had an appointment today to get my ears cleaned out. That's all I had to do. I was tired. Leaden. But. Fine. I had a nap. And descended into a horror of treacle. My brain turned to concrete, thoughts all fogged. I could feel it in my dream. I could not put words together. And when I woke up it was from those deep molasses depths. In an hour of napping I had developed two deep black eyes. I looked like shit.

I got washed, dressed, went out, got my ears cleaned. Get it done.

Came home. Tired. Tired. Tired. But. Let's take Athena out for a walk. I am dressed. Ready. All I need to do is throw her in the car. So I did that. With heavy bones.

Fuck it. I thought to myself. Push through. Do the thing. Grit your teeth. Fuck it. Perhaps today is just in your head. Like the disbelievers say. Oh. You just need to get up earlier, later, sleep better, drink more, cheer up. Whatever fucking inanity it is.

So I pushed through. Lets do it. I'll be fine. Just do it.

This. Is precisely what the CFS people tell you not to do.

What do they know.

CFS is bullshit diagnosis anyway.

So I took Athena for a walk.

About 100m in I was struggling. Gasping. Stumbling. The world narrowed down as it does when pain / you are struggling so much that all you can do is focus on not passing out or taking your next breath. All your other senses shut down, sound, temperature. It's just about the next 10 seconds.

I stopped at a bench. Sat down and felt like I was 100 years old and I would not get up again.

Athena had a sniff around and a gentle hello to a passing dog.

After some time she half bounded at me. Come on. Lets goooo.

Ok.

We continued on. I gave her a decent walk. Shorter than usual. I couldn't do it. I was struggling so much. It was crazy. I sat down again. Struggling. All the warning lights were flashing. You're about to hit the dirt. You're about to hit the dirt. Fatigue. Exhaustion. Yikes. So. Very, very tired.

We got home and I staggered into the kitchen and made myself the simplest sandwich. My brain only half functioning. I needed to eat. It. Might help. I wanted to just lie down. Collapse. I kept going. Took my sandwich to bed. Collapsed into bed. Took a bite. Didn't chew. Mouth full of bread. Just lying there. Everything ached like a fucker. Sunken eyes. Woozy.

Slowly I ate my sandwich. And sunk into my bed.

My bullshit is very real. I cannot negotiate with it. I cannot push through it. There is no magical routine that fixes it. It waxes and wanes in intensity, but never goes. At its worst it destroys everything in my life, at its best I can do passable normal for short periods of time.

I am loathe to talk to people about it.

I feel like I am repeating myself. Forever complaining. And people can't see it. Or don't believe me. Or don't understand.

I struggle to accept it myself. Why should someone else do better than me at that ?

Today it brought me so low that I can feel the ground. I can feel what everything just stopping must be like. Ill. Really. Fucking. Ill.

I go into a loop of worrying that I wont make it. Then realise I dont care anyway. Yes. Let it go. Please. The two different animals in me at war.

Ho hum.

I fight a war on two fronts every day. One mental. One physical. It takes most of my capabilities as a person to be where I am - failing, shit, incapable of doing many things. A brutal war, that almost no one can see.

I am tired.

And like my mom before me said. Some days. She didn't want to be told she was strong. Or would beat it. But just sympathy. And understanding.

I've been watching House lately. Binge watching it. I got to the episode where he's on a bus. Waiting to die. And the other dying person says he has to get off the bus. And he says. He's tired of living in pain. Tired of living in misery. He doesn't want to get off the bus.

This is me. To a tee. Emotionally that scene was a lot for me. I could see myself. Exactly. Someone else summing up my position. Just. Let it go.

House hits different for me these days. I seem a bunch of similarities there. As it turns out I have ended up being a pale ghost of House. And some of the things the show deals with. Are echoes of my own experiences. Perhaps it's inevitable for anyone in a high skill consultancy area... who has to manage their own pain. The similarities... and end results... are the same.

The GP has contacted me again about setting up my yearly health check. They've been trying they say. But can't reach me. Funny. Because that was my line. And then I gave up.

How to explain to them. Communicate. That I see no point.

That I have serious problems that are massively impacting my life right now. And that they are unwilling to bother with. Questionably incapable. Definitely unwilling. What is the point of checking me for run of the mill unlikely but maybe have problems, when you wont fucking deal with the very real very serious issues I have right now. It's not for my sake. If it was for my sake, they'd be trying to help. They're not. It's for their sake. So they can tick a box. Reach a goal. Prove, on paper, on a report, that they fulfilled X amount of things for Y patients. And here is our appointment log to prove it.

It's not about my health. It's about them justifying their existence to themselves and their betters. It's about covering their ass. Punching their time card. And getting paid.

I'm not interested.

I'm not interested in being their checkbox filling tick. If they can't deal with me when I've already got problems, please stop the fucking pretence that you're going to do shit for me by checking for stuff I don't have. Even if I did have something. They would be unlikely to do something. Except prescribe another bullshit statstically likely pill. Not a diagnosis. Not a health check. Just a monkey see, monkey do response.

How. Do you tell the GPs that ? How do you give them that feedback, that a patient has so much - justifiable - distrust in them, that the basic tenet of agreement that they will provide healthcare for me, is broken. I do not believe, you can do that. I believe, you are just covering your ass, and pursuing meaningless bureaucracy because you've been told to. It has nothing to do with me or my diagnosis. You are not even interested in a diagnosis beyond pushing me to a CFS specialist, and getting a CFS diagnosis.

I am at worst an unsolvable riddle. But that in itself should be interesting. It should provoke investigation. Prodding. Why is this so tricky. What is going on exactly. What are the metrics. What have we tested for. What haven't we tested for. Push. Analyse. Diagnose. This is what we do in IT. This is not apparently what they do for regular healthcare. Regular healthcare is a timed feeder that can supply you with dog biscuits every 12 hours. No care. No interest. No diagnosis. Here's a prescription for dog biscuits.

I'm not a medical professional. And I can think of a bunch of tests they could do on me to either rule things in, or rule things out. AND contribute to information possibly about CFS, long covid, whatever. Information is useful. Not bothering to even look for it. Is lazy at best. Negligent at worst.

Lumbar puncture - to test for autoimmines like MS and other rarities. Endoscopy - to check out what the fuck is going on with my stomach and lower intestine. Sleep study - to check why I often feel so shit after sleep. Oxygen monitoring - to check why I get signs of hypoxia, black eyes, purple lips. Controlled medication trials - to see if I react to things and it tells you if its autoimmune or infection or some shit.

Eh well.

That's not the world I live in.

Only the very rich, or fortunate, get to live in a world where people actually follow through and do shit as well as you would expect.

Everyone else gets Sainsburys own brand baked beans. Because. It's generally cheaper to let you die. And breed a new worker. Than fix the workers. Basic capitalist economics.

Anywho.

Today I talked to a friend whilst playing games - I dragged myself to play. And. Hesitantly. With a lot of second guessing. I talked to him a little. About how hard today had been. I. Didn't want to talk to him about it really. I wanted to pretend I was ok. But. Today had been hard.

He told me. That I knew it all already. But that I had to accept that I couldn't do things. He said, he couldn't imagine what always being the tallest flower in the room was like. He said he saw it. The way I always over achieved in everything. The way he relied on me to always have all the answers. To be the adult in the room. And that it must be hard to maintain when things are difficult. And that I set myself ridiculous high expectations. And that maybe it's time for you to accept that it shouldn't always be that way, stop being so hard on myself. And that just fighting you way through stuff was not viable. Regardless of what idiots might think.

Yeah. I do understand. At times I accept it. At times I don't. But ultimately. Just living in my skin is a horror at times. I don't really know how to manage that. If it's manageable at all. It doesn't feel like it's manageable. I hurt. I flake out. My body gives up. The alarms come on. And on top of it all. I swim through seas of misery and suffering and understanding.

No fun. Not good.

I don't know.

But. It helps when someone says they see you. It makes me feel. A tiny bit less on my own with it.