Posts

Feb 7

 Today is the first day my head hasn't felt like being in a diving bell at 10 atmospheres of pressure. I am guessing this means the blood pressure has come down a notch. Having just checked. Wrong. Blood pressure is  worse  today. 155/104. Yikers. Oddly today I have had no hydration salts however. So. Uh huh. Thinking about it, it's probably something to do with the huge amount of pain I've got going on. Such things tend to bump bp dramatically. I just do a ... reasonably good number... in dealing with it. Today has also been a busy day. Busy for me anyway. I dragged myself out to turn up at Matt's memorial - which I didn't think I'd make. The universe was set against me. I slept late in my dozey CFS state, my fault. But then couldn't find my wallet. Losing things like this is a killer sentence for me - I very quickly burn out of energy looking for something and then have to take a long break. If I need to be anywhere, it's basically game over. On the ed...

Feb 6

 Jumpy. That physiological anxiety is still with me. My system is still switched into super alert fight or flight mode. Permanently. It is. Better than it was. It's still pretty bad. I am doing my best with it. At times I find myself just lying there and all my muscles are clenched. Let go. Relax. 30 minutes later. They are clenched again. Dizzy, fog headed and hearing is off again today. It is, I think, a combination of the mental meds and the blood pressure. I think it's still high. I'm not checking it today. And today. I was again subtly slower, more sluggish. Half hydration. I have done a little more background reading on it. It's a thing. It can also be impacted by "deconditioning". Where if you're doing nothing all day. Then your system slumps into some sub level optimisation. But. To be clear. It's at best a tertiary impacter. Not the primary one. The primary one is fucky autonomic issues. I'll see if I can get the doc to work with me on thi...

Feb 5

 I have slept late today. But. Unusually, by choice, not forced. Today is the first day I have nothing to do, no places to go. It is nice. Being able to  choose  to sleep in and rest is lovely. Being  forced  to do that is miserable. The secret ingredient is agency. Today I am subtly downshifted into the arms of CFS malaise. I have a small suspicion this is directly related to lowering my salt hydration amount. I think it's pretty damn clear at this point that salt hydration when I wake up has a massive impact on  some  of my CFS symptoms - notably, how much sleep I need, and how quickly I can "wake up" of a morning. With the salt hydration I am... ballparkish... normal. IE it doesnt take me four plus stupid fucking hours to begin to feel human after waking - I don't feel like I've been poisoned and am dying - and I am not sleeping round the clock. This would tend to suggest that the bump in energy and feeling better after my surgeries was indeed due t...

Feb 4

 Not a great set of days. The summary. On Monday Hazel took me to an "emergency mental health appointment". And they looked in my ear. I met my actual GP - who I have never met before. And she wasn't terrible. We talked about mental meds. We talked a little about me being neurodivergent. We talked a little about zero support from the NHS. She then arranged a follow up appointment for next week. And an appointment with the mental health nurse the following day. Did that, a nice young lady with ADHD who positively vibrated in her chair. She was "one of the people". So we connected. 25 years apart in age I would guess. But. Like recognises like. She didn't have a huge amount to say other than "I was absolutely neurodivergent" talking to me for 5 minutes it was painfully obvious. Also that she couldn't give a diagnosis, but, maybe I was autistic. But. The socially adept kind. Eh. Meh. I don't know. My friend who kind of knows these things think...

Feb 1

Today. Is worse. Long pause. Staring at the cursor. The weight of that statement is terrible. It could so easily be a different statement. One which I have half planned out. By the time you read this... But not today. Today my anxiety has spiked. And. Something has shifted. I can  feel  it. It has started to move into permanent territory. If it isn't already. Today I woke up with a not unusual set of problems. Extremities buzzing. Cold. Bad pains all over. Fucky eyes. Nausea. And of course at the moment. Right side hearing fucked. Balance is off. I suppose I should be thankful that I am still not waking up to  also  feeling like I am poisoned and drained to my boots. Nevertheless. The wake. Is brutal. Sliding into a system full of red alerts and failed states. The heating is still fucked. The house is still fucked. I am suffering and incapable. A million little anxiety wasps glided around my head. You haven't tidied up. You can't cope with the small stuff. Let alone ...

Jan 31

 Yesterday. Was edge of crisis day. If not wandering across the edge at times. Hard to describe. Short version. Dangerous. Losing the plot point. Very no bueno. A friend fished me out and talked to me online. Concern. Suggested I ask Hazel to stay a few days. I have done so. Hazel is staying for a few days. I warned her I might have a meltdown. That's ok she said. I had some minor meltdowns instead with her present. Just. How hard it was. How hard stupid fucking bullshit fuckface being ill all the time was. And on. And other stuff. And fuck my life. And so sad. So very very sad. And lost. And anxious. Too much. Is the short version. So. The issues here are. Chronic illness giving me fuck all wiggle room. Nausea. Nausea is, apparently, one of the strongest ticklers of anxiety. The body doesn't like nausea. And turns up the anxiety dial because "hey, shit's wrong, lets be worried and watchful, we're under attack". Ok. This isn't a psychological thing. This i...

Jan 30

 Hmm. Symptoms have shifted around today. Rightside hearing is blown out worse. Cotton wool head. Not good. Thoughts are laggy and scattered. Dizzy. Noises make me start. Icing on cake. Heating buggered up sometime last night. Is now broken.  Sense of overwhelm just about complete. I think someone is trying to tell me something.  I have to wait for a delivery today. I want to scream. End it. Even waiting for a delivery feels too much. Somewhere in the back of my head the scientist looks on. Well. This is a result of permanent dimished state. If all days are bad days. Then bad luck days. Or multiple bad luck days. Are going to kill you. It's just math. This is what it means to be vulnerable. You've got to a point where you can't really look after yourself. Some of the time you can skate by. Just.