I should be in a hospital now. I should have gone to a hospital yesterday. And yet when my mum suggested this idea earlier, I refused. Apparently when I said I was done with hospitals, I meant I am completely done with hospitals.
The dizziness that I mentioned yesterday intensified overnight, my resting heart rate grew faster and faster and I felt like I couldn’t breathe properly. I didn’t worry. Should have. Could have. Didn’t. And then in the early hours of the morning, I was so dizzy that I felt like I was going to throw up. And… Then, after somehow being moved to my parents’ room so my mum could watch me, I did. At this stage, we decided to check out my blood, just to see what was going on.
And here comes the brief(ish) medical explanation. There is a chemical in your blood (usually found in diabetics), which in high concentrations causes the pH of your blood to drop, making it acidic. Tiny drops in blood pH have major effects on the boy. Everything grinds to a halt – proteins unravel or change shape, becoming useless… And pretty much everything in the body that is important is a protein: hormones, muscle, enzymes (that run every single metabolic reaction in your body, including respiration etc.)… The chemicals I talked about are mildly acidic. In levels below 0.6, the body tolerates them well, and they are harmless. 1.5 is high, and you need to do something about it. 3.0 and above generally means your pH is dropping and you have to fix it… Quickly. Mine were 6.8. I swiftly lost the ability to stay awake, to move, to talk… This situation can take a life in hours. I recently saw social media posts about a teenaged girl describing it as hell and saying it had terrified her etc. etc. I’ve seen social media campaigns for children and other people whose lives have been lost to events like this, or whose brains were so badly damaged that they will never walk or talk again. I nearly lose my life to events like this, at least once a month. It kills within hours. It needs IVs and most times intensive care… And once again my body was so used to living on the verge of this emergency that I got no symptoms other than a grumpy heart, which freaked out as my pH began to drop. Despite drinking a lot I was also severely dehydrated, as my body tried to kick out the dangerous chemicals by peeing for England in a futile attempt to flush them out. My lungs were doing the same, chugging away in an attempt to exhale them…
But I wouldn’t go to hospital. My mum had to help me inject myself, and when she left the room I managed to hit a vein and give myself medication intravenously. I don’t throw up until my pH hits 7.1 or below (Normal is around 7.4, panic stations are manned at 7.35. My lowest ever is 6.84 – I was told 6.9 would be fatal but my body is a little bit invincible and didn’t carry any long-term adverse effects from this incidence miraculously). Anyway, at this stage I knew things were dangerous. And… Still there was no panic, no concern… No nothing. I was essentially a fair way along a pathway to death and my reaction to this was non-existent. Actually, my reaction to this was to bail on plans to go to see a musical in London this evening with my fellow third wheel, his little sister, and one of his friends. And then I was out of it for hours, being woken up each hour to push more medication into myself. Last night I’d pumped in way more medication than should be safe, knowing my body is struggling to absorb it. I infused 7 times the amount that a normally abnormal person should, and still, in the early hours of the morning, my body was dancing with the grim reaper. Damn. Inadvertently saved my life a little bit there, just with a gut feeling.
My mum wanted me to go to a hospital, but I don’t like to bother ambulance crews and there’s no way I could actually leave the bed. Also, they take you to the nearest hospital, which can’t manage me. I just hit this mental block over hospitals, and I couldn’t overcome it no matter how many times I told myself it was stupid. All of a sudden, after 20 years and 5 months, it’s here. I’d call it a fear but it wasn’t a fear. There was a panic at the thought of going to one though. A panic that I might never leave, a dread of being alone in a hospital bed as everyone I knew forgot me… I couldn’t face the thought of doing it again. I didn’t want my life in anybody else’s hands. I wanted my consultants to think that I’m ok, I wanted to avoid having to go through the long treatment plan that is a living hell. I didn’t want to put myself into such a vulnerable situation as to depend on anyone. This feeling just happened at the worst possible time – right when I was going to die if I didn’t go and get help.
But my body is super. Over and over again I pumped its blood full of medication in doses multiple times higher than should be safe (but that for me don’t seem to touch the sides). I slept, because my body was shutting down and that was all I could do. It was a dreamless, involuntary sleep, one that I was unaware I was ever in – blinks that lasted for hours. When I was awake, I was barely conscious. I couldn’t hold injections steady, I couldn’t talk, I couldn’t move at all. I was fading. But I wasn’t in a hospital, and that was all that mattered. My mum however, did start to panic. By this stage she was a few hours late for her job as a community midwife, and was also extremely annoyed with me for being so unwell. But somehow, by some sort of miracle… The level of the chemicals in my blood dropped to 5.4. Still dangerous, but heading the right way. pH corrects much more slowly than that – from a pH of 7.1, with all the IVs I usually require to stop more malfunctions happening, it usually takes 12-18 hours to correct to anywhere near normal. I need IV sodium and potassium because the levels of both of these chemicals will be all dangerously out of whack. Usually I end up with 7 or 8 IVs – I think some bicarbonate and phosphate and magnesium usually has to be thrown in to correct dangerously low levels, and so when I can eat I’ll just have to ingest stupid amounts of vegetables in order to try and obtain a fraction of the top-up that my body needs. But I am now more with it. I can stay awake for minutes at a time (it has taken me a very long time – over an hour in fact – to write this much of this post). My heart is still freaking and I’m far too weak to sit or lift my head. Every cell in my body is being battered by my blood right now. And somehow, without the standard, required treatment… I’m fixing it. Me.
Don’t get me wrong though, that girl in the article I read said this was hell for a reason. It feels like having sepsis, but it’s short term, easier to fix, and kills much more quickly (yes I’ve had sepsis. Not fun). This is the longest I’ve gone for over a year without requiring an emergency hospital admission (because let’s face it, even though I’m not going to go through with one, I need one right now. Until recently, the longest I’d gone without almost dying for any reason was 5 weeks, but that was rare – the average was between 1 and 3 weeks – I don’t post about all my meetings with the grim reaper. I think right now I was up to 7 weeks. 7 weeks. Let’s celebrate that right there!)
I am not out of the woods yet. This is still a very dangerous and fragile situation and if I called an ambulance right now they’d blue light me, shove me in resus, and there’d be no thought of me going home. They’d keep me there for days, they’d put in a central line, they’d tether me to multiple IVs. I don’t want that (not to mention the flashbacks and nightmares and terror it would trigger). I want to be away from the people who might decide that it’s a great idea to transfer me to London and start the living hell treatment plan right now before I ever get to try to run. I’ve messaged the team in London who manage this health hiccup, to let them know I’m in the middle of a medical emergency (I don’t know why I did that). I need to text the people with whom I am supposed to have hospital appointments in London over the coming few days and cancel everything (I’ve been meaning to do this for a week) because I cannot face doctors and hospitals right now, and I most especially cannot handle meeting a new consultant to discuss the hell on earth treatment plan that he wants to try. I don’t want any of that. I want to be here, stuck in a comfortable bed (seriously I’m unable to move), with my dog.
My dog isn’t allowed in my parent’s room (he sleeps in my room, right next to my bed, sometimes half under it, sometimes on it), but when I’m unwell he refuses to leave my side even more than usual, and gets (even more) super protective. He’s been shouted at and removed from the room multiple times, and he just keeps coming back, right to my side, no matter what my parents do to try and keep him out. He doesn’t care that he keeps having to run from the room with his tail between his legs and a look of intimidation on his face. He just wants to be here. When I was out of it, he just sat with his nose touching me, staring at me, and when I managed to open my eyes for him, he wagged his tail like I was holding the BIGGEST treat he’d ever seen. Now that my mum has gone to work, he has set up camp.
This time the wrong call feels so right. Somehow it is working out (my pH is still low, my blood is still leading a mutiny against my body, and I can’t actually do anything for myself, but I’m not dead, so in my mind this means things are going amazingly well, because honestly, that should and could have happened a while ago without my panicked and unorthodox interventions). And in two days time, I will introduce you all to the other blog I am starting, to monitor my progress back to running and attempt to encourage wonderful humans to sponsor me even the tiniest amount. I’m still not worried. This will either be ok (which I highly suspect) or it won’t. I don’t think I care about whether I live or not right now, I’m still not ok, I’m still struggling emotionally (I’m apathetic, stuck way way way in denial, and putting on a front to hide my emotional numbness), but I’m just muddling through. I shouldn’t be able to fix this without multiple IV infusions and somehow I am. This body is simultaneously a poop and a complete superhero. And I am simultaneously irritated with it, and extremely impressed.
For now, I need to let sleep take me again (let’s face it my eyes are closing whether I want them to or not). My head feels like elephants are attempting the 100m sprint within it, I am dizzy, my eyes feel funny, my vision keeps fading to black, I can’t move, I barely have the energy to breathe so my breaths are rapid, shallow and laboured; my heart feels like a mess – it hurts and it’s racing and having all sorts of tantrums; I feel like I’m going to throw up but I don’t have the energy to do that and the effort of doing so is going to upset everything (mostly my heart) to the stage that I will pass out, and I’ve just looked down to discover that somehow I am covered with my own blood (to name but a few symptoms I am currently experiencing). I feel very, very unwell, which is not something you’ll see me write often. To me, the word unwell means “a significantly unpleasant health situation that has the power to take your life within the next few hours” anything other than that… is just a hiccup, and although moderately unpleasant, a nice little break from the grim reaper.
Kind of amuses me that I go through all of this so often and most who know me have no idea. Used to bother me, but nothing really bothers me right now. Even the fact that I currently feel like death.
No way but through.