Posts

Oct 25

 Felt ill the last few days. That CFS-y kinda ill. Doesn't seem to be shifting. A vague nausea that hovers in the background. A feeling of bleh. And the exhaustion. And the rest of it. Getting quieter. I have engaged. And chatted. And laughed.  But I am getting quieter. Harder to do each time. The mask is getting heavy. Today I was going to be quiet. But was pulled into chatting. Probably. Good for me. It chased off some of the forced quietness. But I felt ill again all day today. And I don't know. I am getting tired of everything. Even the last dregs of it are draining out. It is hard to describe. I think. It's the patterns. Something in there about therapy. About having to code switch to people. And I don't know if it's just where I am beyond tired. Or. Whether. Something in me has altered. Is altering. And I am less.. likely... to pull the energy up to do it. In an odd way. Perhaps. That need to do that. To have to rise to an energy level to match. Maybe kept me ...

Oct 20

 Therapy yesterday. The last session. "Last". I span out the therapy to this week because it was clear the therapist was struggling to articulate - they said this directly - and we had run out of time. So. Give it another week. Never let it be said that things were left half hanging. A sentence unable to be stated. As it turned out the therapist didn't have much to say. This is not a surprise. The therapist can lose the track a fair bit from week to week. It is one of their... non strengths shall we say. Concentrated continuity. They tend to operate on a more flighty general continuity rather than picking a conversation up from the week before. Which isn't super helpful here. We talked some initially about how I was doing. CFS being hard. Robbing me of life. "Opportunity cost". Taking away opportunities I might have otherwise had. And that I was at zero. With everything. Didn't want to continue existing. And that the CFS was clearly an enormous exacerbat...

Oct 16

 CFS is kicking my ass. I slept for a couple of days straight this week. Could not stop sleeping. Down in the depths. Everytime I came up, exhausted, a strong pull back into sleep. Around the clock I went. Work this week has suffered for it. Everything has suffered for it. Today I have felt stretched. Nothing is right. Existing is just suffering. There is nowhere you can sit. Nothing you can take. Nothing you can do. Not hydration. Not eating. Not resting. Nothing. Nothing helps. Sleep calls. Really strongly. The pains and headaches roll in and out. The exhaustion persists. The heaviness. Like sinking into the floor. Today I tried rallying myself by pure will. Play a game. Stream it. Force myself into a higher state. Difficult. I maintained for a few hours at a price. And then slumped. I cannot escape it.  Back to bed to rest. Sleeping in and out. And 3 hours pass like they were nothing. Like it was 10 minutes.  Exhaustedly I once again for the thousandth time wonder what...

Oct 13

 Sluggish today. Sleep has been cloying, muddied, deep. Each approach of the surface of wakefulness has come with an  ache  in my torso, that sucking, straining, ill feeling. It is an odd feeling. It feels "ill". Feverish without the temperature. A sickness. Without some of the paraphenalia, no stuffy nose, no sore throat, no temperature. But feeling ill nevertheless. And with that sticky, suffocating sleep. Waking has been mired in treacle and fog. Today I have struggled to do much useful at work. A couple of queries. A couple of checks. But the engine has failed to start. Despite me gritting my teeth. Repeatedly kicking it. It wouldn't start. And eventually. I fell into the inevitable. And slept. And slept. More treacle. More fog. Deep in some exhausted asleep state. When I circle in the shallow waters of still asleep, but somewhat aware I can feel it. An enormous weight and that illness. It takes a great deal of effort to surface out of it. It is easy. No effort. To gi...

Oct 12

 This. Is the hill the therapist will die on. Or perhaps it's the hill I die on. Today was therapy. And after a brief check of how I was doing - a bit of energy today - and how that was - like damocles sword waiting for it to evaporate. The therapist offered nothing in the way of reflection of the defensive session last week. No further thoughts. Business as usual. Ok. My lean was then, that this probably was the end. My lean was that way before the session. And starting the session. Just seemed to confirm that direction. I told the therapist we needed to have a difficult conversation.  I gave them my need. I need you. To admit a mistake. I didn't tack on the apology. Just. Admit the mistake. Correct. Move on. No caveats. No spin. Etc. The therapist was silent.  Why is that important for you to hear those words. Oh boy. Here we go. Because I said it is an indication that the... I rummaged around for the word.... machinery is working correctly. What do you mean machinery ?...

Oct 11

  Some years ago now, my friend who runs a charity dealing with kids reflected that I "made myself very small". He was pointing it out as unusual. And that no one else he knew made themselves quite that small. He was talking about me taking up space with demands or expectations or a need to respect who I am. I didn't have it. I didn't think a lot of it at the time. I understood what he meant. To me. That's how it was. Of course you don't impose. At all. Even slightly. And you are responsive. And adapt. But that was the first time someone had very explicitly set that out. And the commenter wasn't a random. It was someone used to dealing with kids with all sorts of difficulties. Kids for where there was often nowhere else to go. Complicated and rough backgrounds. But all sorts. A background of understanding of the push and pull of demands and space and development. And even though he didn't really mean to. It was an assessment. A nose twitch. Something. ...

Oct 9

 I think, there is something I need from you. And of course, it is up to you whether you give it or not. I need you to acknowledge you made a serious mistake. No caveats. No defensive language. No spin. No ifs and buts. That you made a serious mistake. And then. Perhaps. An apology. And I am sorry I made that mistake. And I need you to mean it. To understand it. Not just to say it because its helpful to me. Or it's what I need. I need you to understand the mistake and learn from it. ~response~ Related threads - I do not entirely trust you anymore. I do not trust your judgement to make good decisions. I do not trust you to prioritise me, instead of prioritising your own ego first. And I do not trust you to understand me. Be present in the room with me. And adapt. When you make a mistake. I have a problem with the language you used. Transferring responsibility. There is a difference between the two statements - I can see that didn't work. and I can see that didn't work for yo...

Oct 7

 Have managed to be useful at work again this week. Doing my hours. Getting stuff done. At least in the small amount of hours I do work now, I have managed to fulfill that bit of my life. Everything else. Not so much. Again. It does occur. That I have a small amount of energy budget in a good week. And if I spend it in better work uptime. Then. Everything else suffers. And vice versa. And if its not a week where I have an energy budget.... Today I am tired. Name a day where I am not tired. Today I am tired of being tired. Sick of being sick. As I stood in the kitchen making a cup of tea and I could feel my body fighting me to keep standing. I was just tired. Tired of always fighting against exhaustion. Tired of never having energy to do shit. Tired of always being in this space where everything is a struggle. If there was a way I could do something. Get energy back. I would do it. If there was a thing that said, 50% of the time this will kill you, 50% of the time you will be cured....

Oct 5

 Today started better. Sleep schedule better. Played a game. Felt a bit better. Then I prepared to go out for therapy. And I felt ill. In the shower I felt myself slide. Nausea up. Illness up. Bleh. Suddenly. Going out felt very hard. 15 minutes before hand I was planning on getting lunch as I didn't feel too bad. By the time I exited the door, I was back down into minimal bunker mode. Go out. Get it done. Come home. No room for pushing it. Felt ill the same as yesterday. A bit better. But the same flu like condition. The temperature didn't help. October. And the weather is warm and muggy. It feels like a decent summer day from the before times. Before summers became screamingly hot. So therapy. Uh huh. After asking how I was and me going through how I was not doing well, and a brief recap of the week, I prompted the therapist to tell me on their reflection. Because they weren't offering. I got a very defensive apology. Barely that. Lots of political language. At one point ...

Oct 4

 Something. That sticks in my head in my older years. Is the miserable idea that no matter how bad you think things are now. They can always get worse. Which. Is somewhat of a defence against when things inevitably get worse. As opposed to thinking this is the worst. But. The price paid for that. Is a rather gloomy outlook if dwelled upon. And. A dubious help. Because if things are already bad enough that it's rather.... spicy... Then preparing for even worse. Just makes it more spicy inevitable. Or perhaps another way of putting that. Is if something is above a threshold already. Increasing it. Makes no great difference to the threshold being crossed. If. You're looking at thresholds. Which is an obfuscated way of talking about whether life is worth it. And stabbing someone that's already on fire in the end, doesn't actually matter in a very real lived way. The system caps out at some point experientially. Even though on paper. Worse. And death. Is always death. Assumi...

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...

Sep 27

 Killer migraine. It has been a long while since I've had a killer migraine. Six months ago, give or take, I had a bad migraine that lasted for a few days. A very odd shaped migraine for me. Which contributed me to losing the plot at that point. Coinciding with the heating going kaput. But that was not.. quite... a killer migraine. Or at least. Not the typical shape. Today was a killer migraine. Or at least. Was shaping up to be one. Took me to the awful edge. And then. Fortunately - or perhaps with good management - it ebbed away. Killer migraines for me are ones that go hard into blinding pain followed by nausea and vomiting and repeating over and over. All the while the *rest* of your system goes haywire. Incredible sweats. Sudden bursts of heat. Very cold. You can get this uncontrollable shivering whilst simultaneously covered by copious amounts of sweat. It makes no sense. And also the shits. And a touch of - which at that point is hilariously minor - visual disturbance. They ...