Oct 29

 Busy at work. Pushing hard.

And I feel awful. Today a deep exhaustion has sat on me. An exhaustion that sits in your bones. That's the best description of it. Every part of you feels tired. Not achey. But. Achey. It isn't an ache. But. It's something. And it's deep. It's hard to explain.

It is at this point very familiar to me. I am never without it. It waxes and wanes in its strength, but it never goes. Always some level of exhaustion. When it's biting less hard you can ignore it for a short period of time. Like holding your breath you can do something for a while - until inevitably you run out of breath and the consequences hit. Then there are times like today. When it bites so hard. That it chases you into bed. Where you feel ill. It pushes you into sleep. No matter how much sleep you have had. And the sleep goes deep. Each waking from that sleep feels utterly terrible. It's literally an agony to wake up, every bit of you squeals that something is not right, your stomach lurches sideways, and you feel incredibly tired. Like you haven't slept in days.

Ho hum.

Everything else also goes to shit. It is a rising tide that floods every system and each goes underwater in a dysfunctional haze.

I have eaten sparingly today, but still my digestive system aches. A similar ache to the rest of me. Bloated and lethargic and energy draining. It crosses my mind that these things are linked. That my digestive system is fucked.

Vision blurs. Heart pitter patters irregularly. Dizzy. And the tinnitus squeals. All of it suffers. 

It is part of the pattern.

I think. It's a bodily system under extreme stress. Not enough emergency services to cope. And so everything goes off the rails. Everything is in disharmony.

So this evening. I feel utterly awful.

So awful that again, I just want to die. It's not worth it. And it feels close. Like surely I cannot get much worse before something critical breaks. All those pipes under all that pressure. Surely one will spring a leak. Blow a joint. And finally we will get to the end game systemic failure.

And yet here I am. For the umpteenth time scraping the barrel. And not quite disappearing over the edge of the waterfall into the abyss below.

I don't fear the abyss per se.

The lingering is pure torture. That's the truly horrifying bit. Living between life and death. Unable to do shit. Forced into bed. Into sleep. Feeling terrible. Alive. Kind of. 

All that aside.

The difficulties of being ill. The exhaustion.

The mental side of it is hard.

Fighting this. Keep on going. In isolation. Another fight no one sees, kept behind closed doors, suffering dark moments on my own without any support.

Very difficult. Beyond difficult. But there is no other choice.

Really. Shuffling off into death would be a mercy.

Tomorrow I have made tentative plans to go see a friend. The one who also has CFS. It will, as ever, be a hard ask. But I am committed to try. I don't see him very often at all. Last time I saw him was more than six months ago. And he has a bit of a unique context in my world, he gets firsthand how debilitating that exhaustion is. A little comparing of notes. A little understanding of each other. So I will try getting out tomorrow.

I think I am going to try very hard from this point on to maintain some kind of good gut health program. I have been doing this for more than a year at this point. But I do lapse in and out of keeping up with it. I am going to try hard maintaining it every day. It kind of gets old. Having to take supplements every day. Eat a couple of yoghurts every day. Fermented this. But. I think it does have an effect. Perhaps I just need to maintain that regime. Maybe. Another straw to grasp. Another edge case trial of something anything to try and help.

The last few days the exhaustion has bitten so deep. Even something stupid. Like tea mugs. Has become difficult. It's hard to take a tea mug downstairs. Things just pile up. Exhausted. I feel like on many days I am right on that tipping point. Of being unable to take care of myself at all. Just that final nudge into not even being able to stick a kettle on. As stupid as that sounds. I feel like at that point, I womt come out of the ball I curl into. Energy ebbing to zero. Unable to move. No energy returned from rest. A flat battery on a car, no longer able to move or charge itself.

If it was gentle. And dreamy. And mostly filled with sleep. I think I could fade away like that. That would be ok. Not ideal. But. Ok.

Roll on tomorrow.

I hope the winds of bullshit change overnight and I have a little energy returned to my sails tomorrow.

But knowing how these things go. It probably wont work like that.

And I am perhaps paying a heavy price for trying to work so much. It is crushing the remaining life out of me. 

On the plus side I watched the finale of series 5 of slow horses this evening in my exhausted stupor. It was fantastic. Slow Horses is truly the best bit of tele on by a wide margin. Plus I do love me some slow burn spy shenanigans. John le Carre and Frederick Forsyth are my jam. The film redo of Tinker Tailor Soldier Spy was also thoroughly good. And Page Eight back in 2011 was way above expectations too. Out of the blue. I think it doesn't hurt all of these things also have some kick ass actors in them putting in some serious performances.

Eh well. Have to wait a year for the next series of Slow Horses now. One of my favourite quotes of this season.

she is an activist..." long on hashtags and short on results."

Perfect zing in our modern age of thoughts and prayers.