Oct 3

 CFS has been ... problematic. I've had worse. Kinda.

There is a thing I learned with depression over the years. And that was it never manifested in quite the same way twice. Oh the large bits of it were the same, and you can see the pattern and what it looks like. But. The details were always different. The cathedral is still a cathedral. But the door has moved.

CFS, or at least, my experience of CFS is a bit like that. Of course the background symptoms shift around in their frustratingly shit way that they do. One day its all the pains. The next day its absolute exhaustion. Then nausea. Then dizziness. Bits of you going dead. Gastro issues. And on. And on. Take those ingredients. Give them a shake. Pick from 1 to N of them. And there you have it.

It also shifts over a longer time period. Things get worse. Slowly shift into new forms. Some things may ease off.

It's one of the awful things about it. Because it makes coming to grips with living it difficult - its always shifting ground that you have to take into account a very large set of possible failure cases. And of course. Health provision wise. It makes health providers run for the hills. Even if it weren't already something that lies on the edge of known medicine, which tends to give docs the absolute willies, because it puts them in the unfamiliar uncomfortable territory of having to admit they don't know, and working at something, rather than the usual ego soothing place of I am an authority and an important person, I know it all.

And yeah. That pattern exists in spades. Because people. It leans hard into the human condition. And ego. And behaviour. And comfort. And laziness. Which is not to say all docs are lazy. But more to say lazy is built into the human animal. Don't burn calories you don't have to. It's a basic survival constraint. And to override that. Takes effort. Discipline. etc. Not impossible at all. But gravity definitely points in a particular direction.

Anyway.

CFS has been problematic.

Real low energy.

Therapy was cancelled again this week last minute. This time the therapist was ill. Last week it was someone in their household was ill.

If you were being cynical you'd say avoidance.

I can't quite bring myself to land there and think it has trumped their professionalism. But.

One of my friends on hearing of the cancellation took a long meaningful pause.

Do you think it's because of the fallout.

Uh huh.

The thought does pop up.

I think it's just unfortunate timing. Again. The therapist has never cancelled twice in a row. And only cancelled once before. 

As it was cancelled. I decided I would make a big effort to go get some soil. And finally repot my poor suffering plant that has been sitting with its roots out for... what... six weeks at this point ?

I felt shit. Really shit. But. Going to do it.

I wanted to just say hi to Hazel as well. She will be away until well into next year. So. Just a hi before she goes.

But.

I was awful on Monday. A zombie. Drained flat. Not a day to go out. At all. Not even slightly.

But I did. Against the teeth of the beast. Wading through treacle and fog.

I got my soil. Slowly. Half functioning. Even picking out the right size water tray was an effort. Like trying to start a recalcitrant pull motor. Cough. Cough. Cough grumble splutter. Cough. Cough. Jesus.

I then headed to Hazels. I was zeroed. I knew this was a terrible idea. I had nothing. I absolutely should go home. This was already a bridge too far.

But fuck it. I was going to do it. And just. Autopilot.

Got to Hazels. Didnt even get out of the car. She tripped down to me. I apologised to her. And said. I am not good. Wont be chatty. I'm sorry.

That's fine she said breezily. And adapted. This. Is one of her strengths. No complaints that I am zero energy. No moans. No sulks. No arguments. No questions. No advice. Just. I understand. And it's ok. Genuinely. Acceptance.

I let her choose where to get something to eat. With the caveat of nothing dramatic. Nothing far. 

We went to Subway. Where she coaxed from me what I wanted. At one point she said come on, get that braincell working. What drink do you want. After I had failed to answer properly a few times.

So we did the thing. She got some shopping whilst I slumped. She got a few things for me. Assessing that I was incapable.

I came home and fell into a sleep. Round the clock. Slumped.

Work surprisingly. I have done my stuff this week. Perhaps. If you look at it. This is where I chose to spend my limited energy this week. On work. And I did a pretty decent impression of someone doing a couple of days of work. At a high quality.

But I also slumped around it. Deep sleeps. Awkward sleeps. Exhaustion. Struggling to eat properly. And that not eating properly. Adding its own subtle downward pressure on the exhaustion.

I got my home insurance through this week.

It has overall gone up by a factor of 10 in 2 years. Not hyperbole. Math. From £246. To £2500. No reason. I have been in this house 25 years. No claims. No oddness. 

It is a minor thing to change.

But it *is* a thing I now need to change. Something I had wanted to avoid. Something I now have to find energy for out of my budget that is continually in deficit.

But I have other things lined up before it. The way they do in my head.

Most pressing. Go. Get. Your. Asthma. Meds. Because that one. Will nail you faster than all the rest. My asthma is no longer something I can be blase about. It's fine. Managed. But exactly that. Managed. If I don't manage it. It quickly spirals. Because it's asthma. On top of CFS and the rest of it. Particularly the sleep bit. Sleeping. Goes from difficult. To. Somewhere south of that. And to be honest. On bad days. Sleeping is already. Uh. Risky.

But also.

If I'm going to switch insurance. I need to just get a few other financial things in order. One follows the other. Sensible. Planned.

Energy I don't have. Making plans for a theoretical me that can sit upright.

Yesterday I dragged myself out to get my meds. Literally. Dragged. It took me *all day* to get to a point where I could do it. And even then. I only forced myself out because if I had left it another 30 minutes, everything would have been closed.

Slow and steady. I did the thing. On the outside. I'm sure I just looked like a slow moving middle aged guy. On the inside. I am at the limit of my energy spend. Running a marathon. Needle on the line. Watching it flicker. Shall we sit on the floor ? Lie on the floor ? Now ? How about now ? Fuck *off*

Went home. Debated getting limited groceries. Which I badly needed.

You are negotiating with yourself my dude.

What do we know about negotiating energy with yourself. If you find you're doing it. It's almost certainly wrong. You know you can't. You're negotiating why you should.

Wise.

I ignored it.

Ok I rationalised. Look. We shall go in. Do the absolute minimum. A tiny amount. In. Out. Home. Ok ?

Ok.

I did that. Slumped back in the car.

Drove home.

Put it away.

And slumped hard again.

As I hit the bed I could feel that energy drain was that awful dangerous level. Where. The weirdest sensation. Like your automatic systems are starting to shut down one by one. There is a *stillness* there. An exhaustion so complete. THIS is the proper teeth of CFS. That. Unholy off the charts level of complete exhaustion that is nothing like any former exhaustion you have felt before. I suppose. In a way when I think about it. It's like being asleep. But still conscious. Kind of. Conscious. Blurry. And fuzzy. Your body hits a point. And it doesn't move. Can't move. There is a peculiar. Ache inside. Not a pain so much as a... I don't know. Like a sucking feeling. Gravity. A visceral... odd...signal. Exhaustion dialled up to 11. It is. A strange sensation.

Anyway. I fell asleep quickly. Of course.

Woke up 2 hours later. Utterly awful. Exhausted. But twitching. Huzzah. One pushing against the other. Sleep. No don't sleep how about we muscle twitch instead. Sigh.

Wait it out. Feel shit.

Oblivion.

The next time I am conscious 10 hours have passed. It is 5am.

The pains have galloped back. All over. Not. Terrible in the scale of possible levels of horseshit. But. Not good either.

I have. A slither of energy.

I think.

I will wait until next week to attempt to sort my financials out and get the insurance moved. Assholes.

And therapy on the Monday. Who knows what that will bring. If you want my pre-run simulations these are the outcomes, in order of probability.

1) Abject apology. Move on.
2) Apology with caveats. Possibly not move on. Sticking point.
3) Therapist breaks therapy citing can't work with me anymore
4) No reaction at all. Attempt to just ignore it.

On my end we have

1) Continue therapy
2) Stop therapy

That's it. I will not be shocked, sad, angered with any of the outcomes. They are already precompiled ! But on my end. Between 1) and 2). Is not a great distance. It very much depends on what the therapist does. 

The complication is the downtime of 2 weeks. It takes the sting out of the tail. Lessens the impetus to actually tackle a serious problem for a more comfortable, oh, well, I've kinda forgotten. Which is human. And also super not helpful here. 

Eh we shall see.

And as ever.

Comparatively. Small potatoes. If the therapist thinks I am revolving my entire universe around them. Boy. Have I got some delightful CFS experience news to tell you.

You. Are. Not. On. The. List. Of. Monsters. I. Am. Dealing. With.

*points at the shadowy hairy 9ft high gang of douchebags following me*