Aug 19

 Things are getting slowly worse. 

I have tried very hard to "just live". Make plans. Get out there. And I can sustain for a short while before I slump back.

So I did go out on Friday to the asian supermarket. On a whim at the last minute I decided to ask Hazel if she wanted anything in the city. She tagged along with me. The start was ok, went around a couple of places, but by the end I was flagging somewhat. Decided to have lunch out. I had some pasta and some garlic bread. Hazel had similar. 5 minutes after I had finished everything slowed down. Sluggish. Ill.

Hazel ate the same amount as me, no large amount, just a regular sized portion at a chain Italian.

After the late lunch we slowly made our way back to the car, I was struggling badly. Took her home. Got home myself. Collapsed.

The weekend has played out with me basically in bed all the time, with a spurt of being out of bed - pulled out if it by a friend to play games on the computer.

It's so bad, that even that. Just getting out of bed. Sitting at the computer. Is very tough.

Despite that. I have still tried hard over the weekend. I made two slow cooker dinners. A chickpea korma basically. And then a sausage and sweet potato casserole.

Gout flared up in my left foot this time. A painful swelling just below the pad of my big toe. Not the worst thing ever, not excruciating. But swollen, painful to the touch, a little limpy. The right foot is as it ever has been the last six months. The heel is sensitive. Putting weight on it makes it squeal just a little. And the longer you go, the worst it gets.

I am exhausted. I feel terrible.

And I reach my lowest point somewhere during sleep. Last night was very bad. I woke up a couple of times struggling, my throat a little swollen a little dry. I am sucking in air fine. But not enough oxygen. And my heart at times is back to pitter pattering. I think it slows down and or struggles too much. I still think there is a cario issue there that is only getting worse. Gout often worsens as your heart worsens. The passing out and nausea with activity. The exahustion. But. Who knows.

In any case.

Whatever.

My condition has worsened.

Getting out of bed is a challenge. Going up and down stairs is a major challenge.

I am really not sure how I will cope with looking after Poppy in September. I should I think be able to keep her watered and fed. And maybe in some windows of energy take her for a short walk. Far from perfect. Hazel doesn't seem to care. She has said even if she doesn't get out at all in a month, Poppy would be fine. I think Hazel just wants to go the US above all else. This is typically her way. She will ignore everything just to get to point A.

Hmm.

Any kind of even tiny hopes I had about getting better or future plans now seem laughably stupid. I am struggling to stay conscious, let alone do much else. I very much suspect that this is what my end game looks like. Slow deterioration into an ever smaller space, an ever less active spot. Until, who knows when, at some point something gives out and it stops. I am kinda ok with it. And also not. I am very much ok with the idea of it ending. I am not so ok with doing it on my own, but, I am not that horrified by it.

As ever, ha ha, it could just be a bad spot. Maybe next month I will feel better. But. Face the reality. Take a step back. Look at the long picture. The six month picture. The year picture. December 2023 I started an effort to get some private health care diagnosis because I felt so shit. I feel worse now that I did then.

No doubt the absolute horrible stress of losing Athena et al has not helped matters, and probably pushed things on a bit faster. I am aware of it. I am also kind of ok with that. Because living in that post Ares and Athena world is hard. And so me spluttering out a short while after they are gone, doesn't seem like the most awful thing ever.

Perhaps I am overdoing it. Trying to do things. Go out. Cook dinner. My chronically ill CFS shit self perhaps can't keep up with that. But meh. I know I am deterioriating too. Everything is worse. Eyes. Pains. Sleep. I have less energy. The gout is creepingly worse. I can't walk properly anymore - compare that to a year ago, big difference.

There's nothing to be done about it I think. In a perfect world, maybe there would be. With some world class health care. A Dr House type sitting on your shoulder. But that's not the real world. 

We all die in the end. Not if, but when. In some ways my time has been too short by some measures. In other ways I think my time has been long - I never thought I'd reach my 50's. But it could yet be that I just eke out a tiny exhausted bed ridden existence for many years. As ever I can't imagine it, but then, I have been waiting for that other shoe to drop for 4 years now, and I still seem to be here.

I am somewhat reminded of the case of the woman in Devon that died from ME/CFS in 2021. When you read her story you see her deterioration. https://www.bbc.co.uk/news/articles/c2q03ppzzz0o . It also somewhat reminds of the woman in the netherlands that caused a storm this year when she opted for euthanisation because of a similar set of circumstances. Rather than go to the bitter end, she tapped out early.

Tired.

I thought at the start of the year August would be The Month. Where it would all go to shit. I was wrong. But. It seems. Maybe not entirely wrong. August is crushing me.

With the way I feel today, I can't imagine getting to see 2025. It feels stupidly far away, and I am having trouble getting through a single day. How on earth can I go on for months ? Past history however would call me an idiot, and sure I will see 2025, and it seems I continually underestimate just how low a bar I can crawl over, and just how dogged that effort to keep on inching forward is. Like flogging a dead horse. Poke it some more. It's twitching !

Meh.

For the record. The vitamin supplements. The vitamin D et al. Are not the answer. Albeit the vitamin D has at times given me a little more energy. And it seems to have greatly abated the tingles, dead hands et al.

There is a tiny part of me, maybe I am suppressing it, that is incredibly sad about it all. Somewhere deep down. I feel sad about all the people I will in turn make sad if I do cark it. It's tragic. No doubt this is me just being sorry for myself and maudlin. The world will go on. It always does.

In the end, I don't think its the dying so much that gets to me though. Although clearly that tiny part of me disagrees. It's the lingering bit. It would be so so much better if it was just a quick simple, go to bed, don't wake up. Done. But the dragging out over time of an ever dwindling quality of life is horrific.

But. Perhaps. I am getting to see just a little of the life my mom had. I was always selfish in so much that I wanted her to continue to fight. And I made a lot of effort when she was more capable of keeping her spirits up, and helping her to carry on when no one else was doing that. In hindsight. I think that was selfish of me. Not that there was an alternative for her, so in the end, that's what you do. And that was a good thing.. But also. I think. I should have been zen with letting her go and not suffering. Difficult. Because she didn't have that option. So you have to try in those circumstances anyway. Tricky. But internally I think it was selfish of me. 

Again in hindsight, I don't think I realised how hard that was for all of us. You just. Get on with it. Because that's what our stupid fucking family does. But. It's very hard to watch someone melt away and suffer along with it. Eh. The irony suddenly strikes me that this perhaps could be what it's like for others watching me. Oh. I don't think so though. I am not sure anyone actually gives that much of a shit about me for it to affect them enough ! I would be the first to admit though that, I could be very wrong about that. I have poor awareness of that in spite of me being allegedly oh so clever and perceptive. All the perceptiveness of a brick in some aspects.

I think often on my mom these days.

The relationship with her was badly flawed. Some real horrible things over formative periods for an extended length of time. Very. Not good. But. Then. In later life. A much better relationship. Fairly easily rated as my closest familial relationship by a wide margin. We talked almost every day. For hours at an end. And we got into stuff. And we knew each other better. And that I miss.

So. It is a complicated relationship.

But more often than not. I think of her. And I miss her. As simple as that.

There was a line from the funeral that has stuck deeply with me. The thing about acknowledging the difficult things in our past but not dwelling on them, and just remember me kindly instead. I can't recall the exact line. It is poetic. And perfectly balanced to not be dismissive of problems, but also be positive.

I talk to her a tiny bit at times. No great conversations. But I say hi to her. I lament to her. I whisper to her how hard it is. Hmm.

There is part of me that is glad that her, Ares and Athena are not here. Because. And solely because. They didn't get to see me in the state I am in now. No doubt towards the end of all their lives I was not in a good space. But. Not as bad as I am now. And for all of them for a lot of their lives, I was functional and capable. So. At the very least. They did not see me suffer as much as they might have. I have reflected that in the end, in any relationship, unless you're incredibly fortunate, someone eventually pays that price. One or the other gets to go first, and have an easier out than the one left behind, in so much as, you don't see any more of the suffering of those you care about.

It's the most vanishingly small of silver linings. It is a shit lining. A lining that is horrible. But. It's a thing. I have often thought lately that things would be worse of Athena were still here - as much as I would want that. Because she would see me getting more ill. And we wouldn't be able to go out as much. And yada. Albeit. I know she was an old girl anyway and we were down to more casual outings.

But. Not going to linger on that. Because already I can feel those shadows pressing about what ifs. You could have done better. Could have done this. Should have done that. The guilt.

Enough.

Stop.

Fuck me.

Dying on my ass and then I layer on a topping of guilt and grief.

Sigh.

Maybe it means something. Maybe it doesn't. Playing games online with my friend this weekend. He suddenly voiced the thought that he had been thinking he didn't have my exact address. Were something to go wrong. And an ambulance be required.

I didn't say shit. Sure. I said.

He poked me again.

I wasn't feeling too well at the time so I wasn't on my responsive best.

I am just mulling over I said, whether it was worth it. An ambulance. The whole nine yards. Just. Inevitable.

Well, it would be good for everyone else if nothing else.

Ah. Sure. Everyone else would worry less I guess.

But we left it there. Unresolved.

Perhaps I sounded that shit, that he wanted my exact details for an ambulance.

Maybe it was nothing though. Perhaps he was just trying to sneakily send me something.

Still.

Always telling.

When people want your details because there is a decent enough chance they need to call an ambulance on your sorry ass.

Oh. It looks that bad externally too huh ? Uh huh.

Sigh.