Bork Slowly Borking

 A short missive from the NHS GP today. CT scan results of my pancreas and associated came back clear. Nothing to report. Which leaves us back to zero and looking more and more like viral. Albeit I think by the time the NHS finally got off their backside to do a scan, my gastro stuff was considerably better - I haven't tried anything spicy yet, but everything else seems to not trigger me anymore. This GP is a lot better than the old sorry lot however. She asked I book a follow up to see how I was doing - and I'll also get the opportunity to compare notes with her and give her the final Harley Street report. Going to go over viral damage, CFS, long covid, and of course, the long term worry of the brain damage. And also touch on whether I should get the covid shot - which I've been offered - in my notably struggling state. I think at this point I am going to be left to my own devices to see if I keep on recovering. If the NHS take the Harley street recommendation they will be...

 So goes the song, suicide is painless. That song has a lot of deep feels for me. It's also not true. Today, as you do, I explained disassociation to someone who clearly didn't understand what they were going through. In fact for a lot of normal people, they've probably never even heard of the term disassociation. One of the benefits/perils of becoming a veteran with mental health experiences and issues is you start to learn the lay of the land and the proper terms for things, how they manifest and what their impacts can be. And so this person obvioulsy new to what the fuck their body / brain was doing  made me relate my experiences with it, and the concentrated form of it - when I've been on the point of suicide. Which is twice. If you are keeping count. Once, something like 14 years ago. And the second time... well... just recently. After explaining it, and a bit of a conversation with a bunch of others also suffering similar - and suicidal tendencies but not really k...

 So that fatigue. Hit me like a train yesterday. This is what I did yesterday as a benchmark. Got up, small bowl of muesli, black decaf tea ( no milk, no sugar ). Jump started the car, went to the hospital to take the heart monitor back, came home, probably 45 minutes all in, exhausted afterwards. Worked for most of the day. Ate an apple. Had a salad with some chicken for lunch at around 2pm. Hung 2 sheets on the line outside - which was a struggle. Started figuring out a new doorbell - took the old one down, undoing two screws wiped me out, sat down at 5.15pm. Hazel looked at me and said maybe I should have a nap. Yeah. Exactly what I was thinking. Woke up, dark outside, figured I should probably eat. What's the time. 11pm. Oh. Maybe not. But I should drink. Turned over. Woke up to get a drink. 1.10am. Holy shit. Went back to bed. Next time I checked the time it was 7.30am. Got up at 8am. Something like 14.5 hours of sleep. Bonkers. But I guess better than a few weeks ago when I w...

 Not too terrible a day yesterday, albeit with several bouts of tingles and waves of fatigue. Roused myself to powerwash off a bit of the back path - doing alright. Had a sit down. Oof. So tired. And the symptoms all sneak back in. It seems I have to be super careful with my energy. Today I have taken back the heart monitor to the hospital. Barely used it - because when I was getting rarer heart blips, tbh, I was too ill to sort out using it, and by the time I felt up to it, they had basically stopped. Catch 22. Drove myself to the hospital today, first time in the car for weeks - battery was flat, of course - dropped it off, on the way back I could feel my legs getting weak. And by the time I got home I was done. Sit down. Rest. Take a nap. Eat something. Not necessarily in that order. Sunken eyes again this morning. It slightly worries me that some underlying cause still lurks that they have missed or passed over or haven't found yet. Who knows. Maybe they will shift in time. Fee...

 Feel not too bad this morning. Not well. Faint tingling in the left hand side of my face and the ghost of tingles up my back. Just a touch of weakness in my legs and a slight shake. But. I think this is probably my best morning so far. It's tricky to tell as it's subtle in its improvement. But again, not wanting to jinx it, I think I am on my way up and out into recovery. Whatever that looks like. I did a bit of cleaning yesterday. First time in.... 4 months. Hazel noted I was supposed to be resting, I had been told not to push at it. Yeah. 10 minutes later standing in the kitchen she says. You're flagging aren't you. Yes. I'm flagging. I had been standing there feeling it creep up over me and a real need to go sit down. That's because you did too much she says. But I felt kinda ok I said. But yeah. My energy is an issue. And when that fatigue hits my symptoms crank up a notch. Ignore it and I start to feel really ill. I'm still unable to make it through a ...

 Felt rough last evening. Tried to go to bed a few times early in the evening, but couldn't sleep. A vague unwellness and fizzing internals again. I felt tired and everytime I got up my head span. Popped some paracetamol to "take the edge off". It helped a tiny bit. But not enough to get me to sleep. With resignation I decided to play a game instead. Not ill enough to be completely hopeless. Not well enough to get rest. Middle path it is then. I had fun playing games which distracted me pretty well from my internals. Although at a few points I could feel my back crawling with ants and it pulled me out of the game experience. But. Eh. I have had worse. Finally went to bed. Difficult. I decided to take my final mild sleeping pill. They don't seem to have much effect at the start, but make me sleep quieter. First time in ages I slept through 8 hours. I haven't done that... since way before December. And I feel a good deal better. Not well. Insides are still jumping a...

 Final report from Harley Street, the doc went through it with me on the phone before sending it on via email. Heart CT scan came back ok. Very unlikely to have cardio vascular problems from calcification <10%. Doc thought that was good. However they found a few calcified granulomas in my lungs whilst they were there. Either an infection or some foreign material that has been trapped in my lungs and has been encased as the body can't deal with it. Signs of Osteoarthritis in the hips and lower back - expect pains in the groin and lower back. Eat more fish oil. Also a shot across my bows about picking up any heavy shit. Stop it. As for the spots in the brain. Yeah. Not great. The doc mentioned that out of 16 patients last week, 4 had the same thing, however in my case it was probable it was migraines. But. A big but. An MRI should be repeated next year to check on the stability of my grey lump to see whether things were getting worse. In the meantime, any changes in mood or numbne...

 Literally as I finished posting the last post, the Heart CT result landed in my inbox. Got to say slightly unnerving opening a PDF that may tell you that you're fucked. Surprise. I'm not. I admit I don't understand the 50th percentile bit. What is that saying ? I am better than 50% of my peers ? Worse ? Which then begs the question. Why the weak left arm. Tingles. Dead arms. Weak legs. Back to the drawing board. A granulomata. In my heart ? A lump of tissue in response to an infection or foreign body or... an over excited immune system ( MS ). Sigh.

 My small improvement in the last few days seems to have hit a plateau. Feel pretty terrible this morning. Back was crawling last night, felt unwell in bed. This morning my system felt on the verge of flipping into crisis. I have no clue what's going on with me. The face in the mirror every day. Grim. My small amount of positivity about the future slides away as I start to think that this might be as good as it gets. The new normal. Just on the verge of critical. I was somewhat better last night, but then, sometimes its like that, peaks and troughs. And false dawns of feeling a little better before plunging back. My eyes are the constant giveaway. The mobile bleaches the depth of the shadows out a bit. The corners of my eye lids are slowly turning red / purple. Probably some feature of having black eyes for 3 months. Left side of face tingles, weak legs, weak left arm, internals that keep racing for air, fluttering, tingles. And arms that go dead. Today Harley Street should get bac...

By the end of yesterday my health had dipped again. So much for the false hope of improving steadily out of the hole. I struggled to stay up til 8pm, then went to bed feeling drained and ill, my back a tangle of tingles and nerve pops, stabs of pain internally that would blip and fizzing somewhere in my mid torso. Again. Left side of my face would tingle in concert with my back. The chaotic feedback of a system in distress. And then managed to sleep fitfully. 4 hours. Then 2 hours. Then 1 hour. Then a malaise of dozing. I went to the hospital yesterday - at this point I'm getting really familiar with the place, I've lost count of how many times I've been in the last few months - and got a CT scan done. It was by far my best experience at the hospital. Turned up 20 minutes early - my bad should have only been 10, but, difficult to judge - and within 2 minutes of registering and sitting down, I was called in and the scan was underway. I left before my appointment was even sup...

 Yesterday was.... ok... ish. For sure probably my best day in months. Face still tingles. Back crawls. Energy up and down. And last night at 4am I felt again particularly ill, but, not quite as ill as I have been. I am eating better. I am sleeping... well, if not better, then a bit less miserably. I am hopeful but incredibly dubious that I might be slowly improving. I have had so many false dawns and crashing disappointments that once again, its formed a bit of a scar at this point. Yikes. But this time, I seem to be sustaining.. almost over 24 hours. But I have to be careful. Careful with what I eat, if its even a sniff of the wrong thing, or too much, then things start going sideways. I have to be careful with energy expenditure, how I sit, dont rush, yada yada yada. Fatigue and tiredness stalks me continually, and my eyes stubbornly black up over night. I've also started getting painful bumps / sores pop up here and there. Nothing super much to be worried about. But notable. Bu...

 Some exerts from Vox today ring horribly familiar. "Even with growing awareness about long Covid, patients with chronic “medically unexplained” symptoms — that don’t correspond to problematic blood tests or imaging — are still too often minimized and dismissed by health professionals. It’s a frustrating blind spot in health care" “It has always been [and] is the case that patients who get sick experience high levels of symptoms like those described by long-Covid patients,” she said. “We have just done a terrible job of acknowledging [and] treating them.” Megan Hosey , assistant professor at the Johns Hopkins Department of Physical Medicine and Rehabilitation What is now coming into focus: the true spectrum of long-Covid symptoms. A recent preprint (non-peer-reviewed) paper , from a Covid-19 patient-led research collaborative , surveyed 3,762 patients from 56 countries who were sick for at least four weeks. They documented an array of 205 symptoms involving 10 organ ...

 Home yesterday. The whole weekend has been overwhelming. I guess I'll explain where I've been mentally in the last few days as opposed to the story so far medically. Friday. I woke up at 6.30am with a half shout. In a panic. I had slept too long. Shit to do. Oh my god. I had not. But I was wrenched from sleep with that panic anyway. I flailed about got up, peed, realised the time and that I was utterly exhausted and went back to bed to catch some rest for 40 minutes. Things were a bit of a blur. Felt a bit numb. A bit out of it. A bit anxious. On the verge of tears. Andy turned up, waiting for me. Loaded the car and off we went. My head had a mild fog in it. Conversation was slightly uphill. Coming into London on the M11 over the hill and there on the horizon the skyline of London. Jesus I said. I already hated it. I spent half my life living in London. And as a kid - from 12 years on - a bunch of us would trek into central London to check out Games Workshop - back in the day ...

 Harley Street. After describing my journey healthwise of the last 12 months, leaving out any mention of healthcare provided the doc says to me unprompted. Let me guess. The GPs have looked at you and decided you're too complicated and dismissed you. Yes. And you can't get an appointment or them to listen. Yes ! That is if you can get past the rude receptionists. Yes ! When I went to med school he says, we were taught to care for patients. The GPs are no longer doing their jobs. I teared up.  I hear this everyday he says. You're not the first. I do some work for the NHS still he says. He went on a 5 minute rant about the state of GPs. Part of the problem he added, was that currently they're getting £25 per covid shot and that's all they care about. He went onto explain his own run ins with his local GP services. Anyway. The second thing he said was long covid. Had I been looked at by a long covid centre ? No. Because you sound an awful lot like long covid. OK. He sa...

 Exhausted. Post scan. Too tired to post. Headline. Nothing killer so far. Doc said I should get referred for long covid. Spots found in brain - probably migraine damage. Tinnitus and left side face tingles connected. Likely viral damage.  Awaiting results from heart ct. Callback next week.

 Ok. Not the last post. Yesterday was. Grim. In every kind of way. But like crawling across broken glass I am still here. I honestly don't know how. For once. Some better news. Today has been a markedly better day for me. It is of course relative.  The morning was the usual horror. And at 3am last night, I was unwell, unspecific, I woke with a groan and many signals all going in the wrong direction. Got up. Peed. Went back to bed in a fug of sleep and unwellness. My insides fizzed. I slept on my left side. Woke up at 6am with my entire left side ringing like a bell again, and for a switch, my right arm full of tingles. My heart started skipping, body flushing, breathing increased. So thirsty. The effects of anxiety probably. Maybe. But who knows. Anxiety stalks up on me whether I want it or not. Its not conscious. Its not like I think of something and get worked up. The body response happens. And drags the rest of me with it. I know how this works. The cart before the horse. L...

 Wiped out today. Super bad day. Two double doses of anti anxieties to get me some sleep. All day in bed. Up early evening. Hazel made clear she is tired. Said I didn't listen. Was angry with my family. My dad. With me. With house chores. Angryvthatvi have got worse again. Said that I needed a plan. I broke down. Already v bad. I couldn't cope. I understand. It is unfair on her. I couldn't think. I kept looking at the knife on the table. I needed to not be here. I did not know what to do I said. Letters were hard to understand. Just getting up at 10am to givw ares 2 pills was excruciatingly hard. Misery. Everyday was a cycle of suffering with a small window of lucid in the evening. I did not want to live. This morning I thought my time had come. Everything I have is hers. Would that I could just die I would. To get out of everyone's way. I don't know. I said through tears that I released her. Go. Its ok. My worst fear. But I said it anyway. I realised I can no longe...

I might have this figured out. I am suffering a slow heart failure ( and a bunch of other stuff ). Pretty sure my arteries are fucked.  Left arm dead and tingly a lot this morning. Some pains in heart. And. The bursts of anxiety.  But its very specific. 4am onwards. As my system slows, blood flow declines it reaches critical. Not enough oxygen. Tingles where blood cant get to. Breathing increases giving me thirst. And finally a burst of anxiety as my body gasps for air but not breathing- blood wise. As I pull back into waking I am calm, but its clear whats going on. All the pains in my heart the last few weeks. The dizziness. The spacey head from lack of oxygen. And the last few years the increasing problems with circulation at night.  Since Dec I wanted them to check it. No one has. Cardio blew me off.  And now I think its critical. I can't sleep of a morning anymore. When the body thickens your blood. I fear its too late to fix given the glacial pace of health serv...

 After bad day, evening a lot better. Insides flutter, but had worse. Sleep around 00.30. 4.10am wake up feeling awfully ill. Not anxious. Not miserable. Just really ill. Stagger out of bed and pee. Hazel still up. On whim take blood sugar. 4.8. Low. But. Eaten 10 hours ago about right. Feel ill, back to bed. Thoughts weird mix of lucid and beginning to stutter. This is like the build up to how I feel in mornings. What the hell is wrong with me. Sleep is killing me.

 2 steps back. A v bad day today. Unwell during the night. Disharmony. 5am. Flushes. Flashes of anxiety radiating from my heart everytime I started to slip away. Thoughts were crazy. Single words. Blips. Cats and dogs went through my head over and over. Reality warped. I kept seeing myself elsewhere. Different places. Different worlds. But always fixing. I wasn't asleep. But. My mind was not there. Fractured. I could feel my heart beating away. I got up to drink. So thirsty. Stuck in monosyllabic again. Single words. I trod on a stone on the stairs. Something something something I repeated. Stuck in a loop of the last sensory input. Brain off. Repeating the next thing in the stack. Glass. Glass. Glass. Water. Water. Water. And then. Dont dont don't no no no no no. I curled up at the foot of hazels bed. She asked if I had taken my meds. The question floated through fog to me.earlier earlier earlier. I dozed on the floorboards.  At some point I realised not to hasdle hazeland we...

The evening. I am lucid. And very nearly me again. My insides are fizzing, but my head is 95% clear.  A very varied day today. I struggled to stay up today. I am trying hard. Andy was due to visit and take me to a spot to sit outside and have lunch, and for a dry run for picking me up on Friday. As midday approached I began to feel more and more ill. Dizzy. Unwell. My insides fizzing. I gave up and headed for bed. All I need to do I thought, is have a rest, a doze, feel better ready for Andy. Lying down a ring of tingles surrounded my left hand side, front to back with a pain through the middle, just under my left breast. My heart grumbled with aches. All in the same area. Left side of my face ants marched. Too much. A jangle of nerve signals all fizzing. Lying down it would not let me doze. I simply lie there, counting each breath, feeling each twinge. I fell into the oh so familiar pit of suffering, my thoughts slide off, each moment horrible, oh god, not again. A slow rising fee...

I spoke to the doc end of last week. She was very sympathetic. But had few answers beyond the immediate anxiety. I told her I was suicidal all week. The first time I have actually admitted that to a health professional. I was beyond caring if they would throw me in the nut house. Norfolk is incidentally a terrible place to be mentally ill. I have been there for some friends who have been through the system, visited a good friend in mental care when he was placed there. Norfolk mental health has been in "special measures" for years. Meaning it sucks. There is no space, and pretty much no help. Which means you dont get a lot of response for serious mental health stuff. The doc issued me with some anti anxieties. Which another good friend was kind enough to go and get. I am burning so many favours and I feel horribly guilty. The doc is away this week, but has made a note to call me the week after. It is a huge relief that someone is trying to keep track of me. She asked if the ...