Oct 16

 Flickering on and off. Chunks of day are disappearing into voids. I am ok for a period, then I am not. Sometimes really not.

Uh huh. Mmm hmm. Seems like quite a regression.

Relevant or not, the CFS people said there would be relapses. Perhaps this is one.

It feels like it all stems from my gastro which cannot seem to settle again. Often nausea, and a whole truckload of other symptoms to go with it.

The other day I had three attempts at getting up and out of bed before it stuck. My head has also been fogged up quite a bit. At times really bad, getting back to the worst of times when I would just stare into space and.. just.. bzzzt.

It's an odd sensation. It feels like the front of my head is full of .. cotton wool.. and concrete. Everything is treacle. And slow.

As I'm writing this I'm on a relative up. Evening. I can think. I am.. not suffering too bad. I have an air of unwellness about me. A touch of nausea. A deep lethargy. This weekend has been pretty miserable.

Despite feeling like shit. And having no energy. I roused myself in heroic fashion to try and make some orange jam. Marmalade if you like. For my possible Jaffa Cake attempt.

I didn't follow any plans, or temperatures or anything. I just, went with the flow. And what I knew of the science. And what I had to hand.

To get it to set, you need pectin. ( or icky gelatine. No thanks ). To get the good pectin, you need the orange rind. And bits. The juice just doesn't cut it. You can.. get a bag, stick bits of rind in it, and stick it in the orange juice to reduce.

No bag.

So instead I took all the remanants of the squeezed oranges, gave them some water and sugar, stuck a weight on them, and let them simmer for 45 minutes. At the end of which everything had turned soft, and, hopefully, in theory, I had some pectin laden sugar water.

Sieved it out, added it to the orange juice, then repeated the process without the rind et al. And left that to simmer for another 45 minutes. Which left me with something that looked like and tasted very very much like .. marmalade. And. It set. Huzzah.

So I have a small bowl full of hard won marmalade in the fridge. Now all I need is a sponge cake to stick it on. And the time and energy window in order to do that.

In other news. Also feeling unwell I went swimming earlier in the week. In.. an attempt to blow out the crud from the pipes.. I ended up swimming a lot. 57 lengths in an hour. 1425m. I doubt I can do a mile in an hour. Then again. It's only another 8 lengths. 65 lengths gets you a mile. It's odd that I continue to feel ok in a pool. But shit out of one. I do have better and worse days in the pool too, but, something about the cold water help. Cold water is known to stimulate the immune system. Maybe it's that.

Had another family meeting about the funeral. Because. Uh huh.

So as it turns out now, we are at the point of having an entirely normal funeral. Someone will be speaking. Friends are invited. So everything is as you would expect. It has been a journey. My sister is now also going to the funeral. Everyone it seems is slowly processing what it is to be "normal", and getting there. It's messy and emotional. And it should not have been this hard. But on reflection. This is absolutely peak my family. I feel overall again I was the voice of reason. Yes we should get someone to speak. No it should not be one of us - unless you really want to do that ( they don't ). No it doesn't have to be religious. It can be. Doesn't have to be. An intro, a bit of talking, and outro, that's what's required.

Everyone is on board.

But that stuff needed to be explicitly said and planned. This. Is what we are doing.

Back to me.

All in all I am struggling hardcore. I am struggling to stay upright in the face of fierce health headwinds. My mental state trails in its wake. Miserable about the relapse. Ghosting around thoughts of how long I can keep it up. And in the pauses. There are conversations about my mom. And I keep revisiting what that means. Death. What the point is. That I am free.

Very far from easy at the moment. Pace yourself. Hopefully it passes. Tomorrow will be a better day.

And within the peaks and troughs of any given day, make sure to make the most of those moments when I feel better.