Bork Slowly Borking

 Staying with my brother for a few days Dahn Sahf ( down south ). For a break. A mental reset. A change of pace. To spend time with my family. Can't say I was entirely confident about the journey. I had some very generous offers to pick me up and ferry me there. Which is amazing. But I didn't want to put anyone out. At the same time I considered it a ... dubious... decision to drive there myself. But. Fuck it. Of course. As ever. When do I ever listen to counsel about taking it easy. Hazel said I was stupid. I can't exactly disagree. You say yes when someone offers she said. Mmm. No. I feel bad. Anyway. I made it without incident. The last ten minutes of the 1 hour 50 journey felt ten minutes too long if I'm being honest. I was counting the minutes pretty hardcore at that point. My tingles were really acting up. And I needed a rest. But it wasn't a sudden shift to feeling like crap. So. Good ? Well. Not good. Better. Considerably better. I also had a bit of a split ...

 Improvement over the last few days. Tingles have subsided ( but not gone ), feelings of unwellness have lessened. Weak legs persist. It's something that on some days runs a close line however and threatens at any moment to get worse again. Perhaps I am getting better at tuning in to the ebbs and flows a bit and slowing down when they aggravate. Perhaps it's just coincidental. I have definitely been more careful not to overdo it. I've also noticed I'm starting to sleep longer. I've also noticed a subtle pattern to eating and some of the symptoms. My gastro problems that I had - I thought - were gone. But I am pretty sure they have not gone. They are just much more subtle now, but still there. Sometimes something I eat will set off my internal fizzing. Interesting. Another slow healer perhaps. But this definitely falls into *mostly* a category of very copeable with. I am mulling over whether some of the worse days were actually caused by some iffy eating days. Don...

 Feeling a bit better today. So strange. Ebbs and flows. But as the afternoon has worn on, my condition has slightly gone down. The weak legs seem to be a continual feature of late. Wobbly. Shaky. Ho hum. Mentally. Eh. I am on the edge I think. My mind detached briefly this afternoon. Bonkers. I suddenly became hyper aware of time and your focus within it, are you focusing on getting through your work day to the evening ? The next day ? The next week ? A year ? If you look up and think of what you will do this evening. Tomorrow. Next year. 50 years. It changes entirely. At some point in there you are dead. At another point you're just looking to watch something on TV or the internets. Or going on holiday in the summer. Or are you in the moment. With each second. Depending on your focus, reality seems entirely different. Most of those focal points ... give me serious issues. No hope, only darkness. Cheery mood again no doubt. It's a challenge keeping my mind positive and not ski...

 Slow start. Like death warmed up. Noticeably weak legs today. Almost... shaky. Ear is screeching. Feel ill and tired. Loathe to get out of bed. My miserable brain regarded my blackened eyes, the aches in my chest, and my blood drained lips to make the case that Shit Wasn't Right. Sigh. Dying by degrees. Or just very very very slow to heal. Like. Possibly not healing. I read up on post viral effects today to see if anyone had any correlations with black eyes. Nada. Fatigue, general feelings of being ill and yada were common. Which did sound a lot like me. Usually gone in weeks. Sometimes months. With some things, like Nile fever, the average length was... wait for it... 5 years. There were some notes that it seemed to be more prevalent in those with weakened immune systems. Oh you mean me and my hole in the arse that the NHS cant be bothered to do surgery on. Like that you mean ? Sigh. I'm barely functioning today. I am trying my best to stay *out* of bed and up. Difficult. Exh...

 Feel worse again today. I wobbled last night around 9pm. Perhaps because I hadn't eaten dinner. Perhaps because I was tired. Perhaps. Just because. And then today, worse again. My tingles greeted me as I got up. Weakness in legs. And everything... just off. The left side of my face feels... tight. The overcast day matches my mood, subdued, unhappy that my condition is disinclined to steadily improve. My mind is in one of those borderland places at the moment. Aware and thinking and walking along the edge of the abyss, looking over. The shadows are long, and it's so easy for me to place a single foot wrong and end up pitched into that bottomless chasm. This is it. Whispers my brain. This is you. Permanently. Wait another 3 months. Watch it deteriorate. Watch them apologise for not catching something earlier. And what are you doing. Nothing to do. Sitting there. Bleakly staring at the walls. Waiting for existence to end. Paused, frozen, whilst everyone around you is a blur of li...

 Levelled off yesterday. Not better. Not worse. Ok. "Ok". IE far from bloody OK. But copeable. If I am not asked to do shit. Following last weeks marathon six day work schedule - Hazel reckons it was 7 out of 7 days working - this week I have learned my lesson ( ah ha ha ha ha ha - no ) and didn't work yesterday on my proper clear day of rest. I have it in my head to go visit my brother again soon, twofold, one, spend more time with them all, and two, see if it helps my recuperation and gives me another break after this shitty week. And because I dont want to put anyone out, I'd drive down there for the 1hour 45 minute ish drive. Mm. That's far for me at the moment. Not even sure if doable. Hazel suggested a shorter journey first - to the coast with the puppers. 40 minutes. To be honest I was borderline yesterday. Alright. But only just about. I reallllllyyy was disinclined to push or do anything except rest. I went for a nap at 1pm ish... and got up at 5pm. Uh hu...

 Slightly better today. The rollercoaster of bullshit is wearying in itself. Meta levels on meta levels. That being said, anxiety roused me from sleep, kept me increasing company for an hour and a half, before the doc rang promptly at 9am. So today I spoke to the GP, finally. She was very sympathetic. Mark that as two days in a row with sympathetic responses from the NHS. Which I am very grateful for. She echoed the statements of the neuro guy yesterday - without realising it until I said as much - that we were probably getting into areas that to be frank, they didn't know about and at best it would come down to vague "probably viral, probably post viral syndrome, ME, CFH" kinda things. We're off into the woods of medical unknowns. Marvellous. But I appreciate the honesty and am fully accepting of the limitations of our current knowledge. That I don't have a problem with, albeit it still leaves me in the shit. So next week a blood test has been arranged to try and...

 Spoke to a neuro consultant at the hospital today via phone. He sounded pretty senior - had a bunch of students in on the call, asked if that was ok. Sure. We managed to get a look at my MRI from 3 years ago at the hands of the NHS. The spots were there - in fact he counted 5. Similar size. So not new. But the NHS deemed them not reportable. But somewhat reassuring that they hadn't just popped up in the last few years. He agreed an MRI in a years time was sensible however. He wanted to know how I got my Harley Street scan done. And how much it cost. And could they have the data please. He was very good to be honest. He said it seemed clear I had been through the wringer, was at pains to point out the differences between IT and medicine and said it was likely I would never know what the cause of my issues were - but it seemed clear they were systemic, and probably viral. Long covid or otherwise. He emphasised *probably* a second time. He reassured me about MS and said it didn't...

 Oh no. Yesterday was bad. Tingles almost seem fixed in place now. A vague headache roiling around. Had the overwhelming urge to continue to head back to bed, for peace, for oblivion. Anxiety spiked up and down at random. Hot flushes. Pains. A palpable sense of doom carries with me. I feel awful. And I hate to say it. Thoughts of just ending it all have come back to the fore. I can't do it all again. Not again. I don't know what to do. By the evening I had regained a little composure. Enough to play Valheim and chat. But it was fragile, oh so fragile. And this morning the anxiety demons are back at it. Tingles are there. With a new pain in my left ear that comes and goes. And the weakness in my legs has returned. Grim. I fear the worst.

 Hard. I had my worst day in quite a while yesterday. Felt queasy. Ill. Tingles were on the march. And my mood was low because of it. I had a nap middle of the day because I was so tired. Got up, worked until 5pm. Then promptly went back to bed. And slept fitfully. And slept. And slept. 16 hours. I am struggling not to slip further into it. Not that my struggles have arse all to do with it. It will do what it will do. This morning I feel weak and off. Left side of my face feels... weird. All my thoughts are dark with the implications of what's going on. A sinking ship.

 Another iffy day again yesterday. Tingles. Tired. I spent most of it working. I know. Stupid. My mood was pretty bleak. I seem to have plateaued recovery wise. And my mood has darkened. My horizons have drawn back in again, and I am just quietly and grimly putting one foot ahead of the other but with a growing expectation that this is some permanent feature and or some slow long drawn out death rattle. But you just get on with it. Don't you. Ho hum. I suppose the mental trajectory is about par for the course - improved on meds, improved because I start to feel better, then begins to decline as recovery stalls out and leaves you washed up on some semi functioning shore. Meh. I know, Marathon not a Sprint. But it feels like the Marathon has stopped entirely. Tinnitus in my left ear screeches up and down, and with it a new thing, getting a little pain now and then in there. Tingles are slowly spreading again. Across my back. Down the left side of my face. Bouts of severe dizziness wh...

 Another semi iffy day yesterday. I struggled at times to keep going. Took the dogs out for a short walk. It didn't exactly wipe me out, but the change was notable. Even before I had set out, after wrestling wiggling dogs into gear, I had started to feel ill. Short walk through largely gritted teeth. Came back, mind had started to stutter. Tingles were up significantly. What the hell is wrong with me. The rest of the day I limped along feeling half unwell, half exhausted. Played some Valheim, during periods of that got to within touching distance of feeling normal, but, I couldn't maintain it. Dipped in. Dipped out. Said to Hazel I might have an early night - 7pm. But ended up getting back up at 9.30pm ish and jumping on Valheim for a few hours. Tingles were worse yesterday than they've been in a while. Still copable with. But. Wrong direction of recovery. This morning I was awake at 6am. Way too short of a sleep. But my brain was on. The rest of my body kicked in behind it...

 With a small outing to take Hazel to the docs - finally they listened.. kind of.. - yesterday I spent my day off pretty much working.. on the Charity app. Slow progress, the challenge here is not so much the data, or the system, but the extensive installs and system setup that has to be done hands off, with no technical expertise on a random PC. Not your typical professional requirement. But I'm getting there. Currently writing an extensive and very friendly installer app to manage all the nonsense. Didn't feel amazingly super again yesterday. Tingles are definitely more prominent, left side of face particularly. Last night I had a small touch of the tingles in my face reaching from above my left eye all the way down to my jaw. Ho hum. This morning on waking, left side of face above eye tingles. And there's always something "dubious" going on, left side of torso, bottom of rib cage. Oh well. At this point I am very resigned to it, and just hopeful each day it imp...

 Definitely feeling a bit worse over the last few days. I've had farrrr worse. But. Eh. Yeah. The tingles have stepped up a notch. Fatigue has stepped up a notch. Random pains and vague headaches. A few dull chest pains. Meh. I suppose I may need to rest more, I've been busy of late, working, side working, going out and doing stuff. But eh it's not a great development. Reminder to self. Recuperation may be a marathon not a sprint. Playing Valheim - a computer game - of an evening has been a fantastic distraction for me. It cheers me up, and takes my mind off stuff, and the symptoms *mostly* fade into the background, only occasionally bumping through my game playing to remind me, hey, HEY, did you know you're not well ? Yes. I did. Thanks. *scratches at the ever nerve buzzing left eyebrow*. But, the game has been a timely and welcome bit of escapism, and long chats with real people in said game has also served me really well. Also chit chatting to various people online, ...

 Kind of a busy day yesterday, and concordantly I felt the worst I have in some time. The vague illness returned, tingles upped in strength and area - face crawled - fatigued, some chest pains and stabs of other pains. Uh huh. I just ignored it for the most part, but did end up going to bed early. I am still not entirely convinced my days on this earth are not short in number. At least now, for the most part, I am not suffering with it. Too much. So yesterday had the cleaners in to give the place a spring clean. Ha. They did a good job, cleaned most of the downstairs areas. My eating schedule and everything else yesterday was then out of whack. And putting on a social face and dealing with them. In the afternoon took Hazel to the docs again. Not getting into details but it was an upsetting visit for Hazel. I waited in the car for her for 45 minutes, she came back in tears. Docs not listening to her. In pain. Refusing to undo something they already did. Why not wait a bit and suffer...

 Yesterday I dared to do a bit of digging in the garden. Sitting down. One handed. But still. After 45 minutes of soil prep and planting, I wavered. Time to properly go rest. The rest of the planting will have to wait. But not a terrible crash. Just a shot across my bows. Stop now or pay for it. So I did. And in an hour had mostly recovered. So I went and cooked potatoes. Hazel admonished me. You're doing too much again. I'm alright I said, look, I'm sitting down peeling potatoes, whats the worst that could happen. So generally a better day again yesterday with some very real warning shots when I got close to my limit, which is not saying much. I also ate a bunch of crap yesterday. A burger for lunch, chilli nachos for dinner. I haven't eaten crap in... months. The burger was the most amazing thing ever. Ha ha. If you want a good food experience I recommend not eating something you really like for four months, then trying it. It's pretty damn good. I ate probably 15...

 Had a better day yesterday. My official day off - I dont work Fridays unless something major is up. I have a super flexible work arrangement anyway and come and go pretty much as I please. This ironically means I typically dont take vacation days. It's rare if I take a week off in a year. So it being my day off... I decided to work and make some progress on the charity app. No rest for the wicked. Hazel had a pretty gruelling doctors appointment late afternoon, so I thought I'd check the car was running... and whilst I was there, would go out and go for some garden supplies, mainly to get the car to stretch its legs. I realised this would probably get me a shouting at from Hazel for "not taking it easy". Leaning into it, I picked up 2 x 20kg bags of potting soil, a bunch of plants and yada. It did cross my mind that I was again taking the piss, and, also lifting hefty loads around, something I had vowed to stop doing given the wear and tear on my lower back was ...

 Working yesterday. Ploughing through tedious messy code and pulling it into some semblance of order. Physically took it easy yesterday. And was doing kinda ok. Tired. Of course. When am I not at the moment. But. Tingles were very low level. Then I got up and opened a box. And felt instantly worse. Opening. A. Box. I felt ill. Tingles up and down my back. Tingles in my face. After 5 minutes of going through a box. Dismay turned into horror. I can't even open boxes now ? My mood lowered. I am thoroughly sick of being sick. There is some twisted relief in that at least now I am not hardcore suffering, it's not nice, but that's mostly what it is, not nice, not abject misery, not nerves on fire, not lying there feeling pains in my chest and ping all over my torso, and that if there is something serious underlying and I cark it, well, at least the journey there is not super terrible. I Am ok with just dropping dead. Still. As ever, end of week my energy lags. Work clearly sucks ...

 Back to work yesterday. Was left largely alone in peace. Crunched my way through a whole bunch of code refactoring over to a new standard, and pushed on development of a proper repeatable testing system et al. Unfortunately this meant my actual billable progress was slow. It was also quite the pace of work and by midday I was tired as hell. Apparently mixing it up with some hardcore brain shenanigans is also tiring for me. I slogged through the rest of the day with a few breaks, finished up by 5.30pm ish. Took another small break, then, glutton for punishment started noodling around with yet more tech, and looking into other platform options. Tired. Tired. Tired. Yesterday I got a message back from the GP. Got an appointment. 22nd April. I asked for an appointment on the 31st March. I'll let you decide whether thats a good or bad response time. Hazel was angry. Send them a message she said. That's not good enough. I looked doubtfully at her. My very strong inclination is to ju...

 Feeling a little better yesterday early afternoon, I decided to cook a vegetable stew. 10 minutes into cutting vegetables I started flagging. Hazel reckoned I was in the kitchen for an hour cutting, cooking and prepping for the stew slammed in the oven. After that I was utterly wiped out. Badly. My eyes darkened up. Mr right foot got cramp, then pins and needles. A deep internal pain starting on the left and going across, just below the shoulder blades. I felt ill. I went and had a nap. After that I roused myself to make the dumplings, felt like utter garbage and puffed, panted and wobbled through the 20 minute task. I went back to bed. Hazel said I needed to do smaller things. You feel a bit better she said, and rather than cook something small, you're out there for an hour on your feet, cooking from scratch. I said to her it was difficult to gauge. My body is not giving me the usual signs. I can feel kinda ok, then crash hard. It was difficult to know. I am unsure what to do to ...

 Eh, symptoms have quietened again after a day of less activity more rest. That being said, yesterday I repaired a small hole in the steel bath. Probably.. 25 minutes of work. Knock out a small amount of rust. Rub it down with sandpaper. Fill with epoxy. By the end of it I had shaky legs, tired, eesh. After a late lunch and a sit down, I went back to bed, where I believed I didn't sleep, just rested, until Hazel informed me she had been up shortly after I went for a nap, hosed the garden and did a bunch of other noisy things I was oblivious to. Clearly I was asleep. Still not managed to talk to my local GP yet about my results and update and yada. Slow. Slow. Slow. If you have so much money you don't care, I can highly recommend just getting all your healthcare via Harley Street to be honest. Talking of which, something occurred to me today. The hospital took 2 chest X rays during my cardio period of misery, and found nothing. Harley street finds 2 granulomatas. Is this the NHS...

 A return of symptoms. What. The. Hell. Tired yesterday. Needed to sleep. Couldn't sleep. For the first time in months I took the dogs for a walk - not just a passive bystander - but took a dog and went for a walk. Which is quite physical given the dog in question pulls and yanks and is a handful. I was ok til around half way around. Probably an hour walk. Then I started to flag. Then I started to struggle. On the final stretch home a weird thing started happening. Lots of tiny needles prickling me all over my torso. Not pins and needles. But like a single needle. Stab here. Stab there. Lots of them. In quick succession all over. Not too dissimilar I guess to when your hands are very cold and you suddenly warm them up and you get that stabbing. The intensity increased until it was.. itchy.. sort of. I started scratching. Left side of my face started really tingling in sympathy. Breathing went up a notch. Got home. Could feel my mind disappearing. The reappearance of the erm, erm, e...

 Exhausting day yesterday. I tried taking a nap a few times I was that tired, but my brain had different ideas. So I slogged through then stayed up playing games. Because of course. This morning I feel.... within ballpark normal. Lordy. Don't get me wrong, a vague snake of tingles pitter patters over my left side back and seems to pierce internally into some weird idk fizzing, and my left side of face has a peculiar feel to it with some tingles underneath annnddddd I haven't done shit yet to exhaust myself. And. I had a chest pain this morning that pulled me from sleep. Hmmmmm. But, pretty damn sure this is my best day yet. Checked the eyes. Yeah. Still black. Uh huh. Think I might take it easy today physically. I put most of the shopping away yesterday. Holy shit that was hard, super wiped out afterwards. But I did it. Not very well. But I did it.