And then I realised that I have no idea what normal is…
I sat in our first lecture of the day yesterday and the tiredness hit me. My eyes were open but the world would fade to black, I’d feel BEYOND dizzy and lightheaded, and then after briefly and completely zoning out, I’d snap back into the world with no idea what had happened for the past few seconds. My vision kept becoming unfocussed and I couldn’t control the muscles responsible for holding me in a sitting position (hello desk, nice to meet you, sincerely, my forehead!) Normal tiredness – right? I just assumed so.
Between lectures, my friends and I went to sit in the “restaurant”/canteen hybrid thing that sits at the entrance to the student village on campus. I was sat perching on the edge of a seat with a friend who has watched me almost die far too many times, when I coughed. Big deal, I coughed. But it was a big deal. Because I coughed up a lot of watery stuff. I assumed I had just had a chest infection, and then I coughed again. And again. And each time there was the water. It had progressed way too fast to be a chest infection – I hadn’t been coughing at all until that moment. I developed a pretty instant wheeze, and then I felt my heart rate. Skippy had mistaken himself for a freight train, but he wasn’t a super modern one made of steel, he was one made of paper and glass – my blood pressure was so low that I could barely feel a pulse. I told my friends that I’d been so tired I’d been blacking out, and for some reason I asked if that was normal even though I knew it was. “Er… No! [Me] that is not normal! I think you should go to the hospital.” Oh… Not normal? Really? I was genuinely so calmly sure that it was perfectly typical to do that when you’re tired.
The only time I’ve ever experienced a similar coughing/wheezing situation to that that is when there was fluid on my lungs. Upon realising this, I freaked a little, because feeling like I can’t breathe is the one thing that gets to me. To me and my mind it is the scariest element of advanced acidosis, sepsis… Anything.
I’m trying so desperately to be more open about my health at the moment, but I worry about bothering or boring or worrying people. Multiple times a day people offer to take me to the hospital because I’m that unwell. To healthy people, that seems to be a knee-jerk reaction – to call one of my doctors or walk into an A&E department. I mean… That’s the normal, rational thing to do right? But they act like it’s this quick fix. They act like there’s no trauma behind it, and they don’t understand that my doctors can do nothing from the end of the phone other than worry with them, and that doctors in A&E will probably stick in a central line. A normal response to the situation for me was not a normal reaction at all. It was blasé, it was I’ve had worse but this still scares me, it was no need to bother anyone because it isn’t an emergency (forgetting that dealing with it at that stage would prevent an emergency ever needing to occur).
This time I knew I had a problem. Usually when I consider going to hospital, it is because my desperation overrides the fear that stops me going, but this time it was a fear that overrode the fear. I went to my next lecture though. I struggled to breathe through the entire thing. People kept telling me to go to hospital, and in the end my assurances that I was fine became convincing enough to assure even myself that it was all ok. I will not miss lectures for anything other than a brush with the grim reaper. I just don’t. Last year I’d walk a kilometre or so (maybe 2) to get to our lectures on the medical school campus, and the walk was far too much for my body, which meant I’d be so rough by the time I got there that I’d say I was tired so that when I passed out onto my laptop my friends just thought that I was sleeping (and this happened every lecture without fail). I was scared the uni would kick me out otherwise. I was too ashamed to do anything else. I went to every one of those lectures (when I was out of hospital), and at the same time I missed every one.
I didn’t go to lectures today.
I got a stomach bug, which by itself is not enough to stop me going to lectures. Try managing type 1 diabetes with a stomach bug though, throw in an already outraged body, and then try to figure out whether or not you’re in acidosis or it’s just the stomach bug doing its thing… And that still isn’t a reason for me not to go to lectures. What stopped me was that I was so dizzy that I stumbled to the bathroom zig-zagging and grabbing the walls just to stay up, and could barely walk. And then I realised that with the amount of visits I had to make to the bathroom (so many that eventually I just curled up there and went to sleep because I didn’t have the energy to move) I wouldn’t last through the lecture that I physically couldn’t get to anyway. I slept from 7pm yesterday round to the same sort of time this morning, yet I physically could not stay awake. Again came the vision fading to black, and I’d wake up in places that weren’t my bed, stiff and sore and cold. I blacked out a lot. So many times. All day long.
And then I saw myself, and that was when I realised quite how much trouble I was in. My blood confirmed this. I could and should have been in a hospital. I picked up my phone to call an ambulance, and then the panic and the flashbacks set in and I bailed, accepting that I’d just go right where I was and be found in a few days when someone eventually noticed I wasn’t at lectures. I was dehydrated because of the stomach bug, on top of being seriously dehydrated from my blood sugar levels, and my mouth was so dry that I at one point genuinely came to choking on my own tongue, unable to unstick it from the back of my throat. I couldn’t drink. Even if I could, no amount of water would take away the dryness – it’s the nature of a diabetes-induced thirst. It got to the point that if I tried to move I’d just black out. My heart thought I was running a marathon, and I was in serious pain because my GI tract seemed to contain the fire of a thousand exploding suns… Orbited by knives…
I didn’t even know how to get to the door of my room to let anyone in. I was stuck. So I spent most of my day in the bathroom, coming to from a black out I had no control over to find a couple of hours had passed since I last saw the world. I couldn’t move. And all I could think was I have to meet my personal tutor tomorrow, and then my disability advisor… And I have to do the coursework that is due in on Thursday which I haven’t been able to complete because our group messed up the ECG tracings… So eventually, I emailed that module’s lecturer from my bathroom floor, unable to focus on the phone screen but hoping that I knew the position of the letters well enough for autocorrect to have helped me out. It has been a very, very long and very scary day. My body can barely human even now, and by “human” I mean remain conscious. It just keeps switching itself off. I’m so cold my feet are blue, and so dehydrated that I am cramping EVERYWHERE.
At some point during the late afternoon, I decided to take a risk between black outs etc. and try to get to the shop next to our accommodation building because I’d finally figured out how to stand. I wore the university jumper that I usually sleep in, and a pair of soft jogging trousers – both items I never normally leave my room in. I was too unwell to care. I just needed something with electrolytes in it (sports drinks to the rescue!) and some comfort food in hope that I might eventually be able to persuade myself to eat something other than a dry cracker. I must have been high as a kite, because the things I bought make absolutely no sense to me now. Things in my room are in places I don’t remember putting them, and there are text conversations I genuinely don’t remember having. I briefly felt better, and then got much, much worse. As the world faded out again I stuck a needle in myself a few times and hope I’d done enough to stop the advances of the mutiny led by my very own blood.
There was no need to make a big deal. There was no need to start posting on group chats about how I felt like I was dying like people do when they have a cold. And I will walk back into lectures whenever they next happen without anybody having any idea what I’ve been through today (even here I’ve left out the panic-inducing details, because I don’t need to worry anyone and I seem to be through the worst now). But it made me realise how years of chronic and often serious health issues has distorted my view of what is normal, and what is acceptable, and when I should go to a hospital. I thought I knew what normal was… And I don’t think I’ll ever be able to comprehend it, being healthy, I mean. Just like most healthy people will never be able to comprehend what it is like to be me (although in my mind, I’m no different to them, I’m healthy too, and the way I am is normal). I give off this illusion of normality. I did it all day long – maintained normal conversation when realistically, if I hadn’t saved my own ass, I’d have been dead within a matter of hours. That’s just normal to me, to come so close to the end and deal with it myself (in very unorthodox and desperate ways), to not feel like that is worth bothering a paramedic with (not that I’d ever ever do that – NOPE).
People will think I missed today’s lectures for normal reasons – that I couldn’t be bothered, that I overslept, that I was ill in the same way that they become ill (I had a headache or a sore throat or a cold). When I use the word unwell, things have to have had the power to kill me, or I have to have felt pretty near to the grim reaper. I don’t use the word lightly, yet when I say it, people will take it lightly, because that’s just normal. My definition of the word unwell, is not. I have no sympathy for myself at all, and hate when others direct any at me; yet when my friends get a cough or whatever I worry like an old woman about them. When I tell them I was unwell (if I ever tell them), that’s what they’ll think was up (apart from those who know me well enough to panic like nobody’s business when I say I feel unwell). They’ll have no clue that it means I spent most of my day unconscious and confused as to how I could inject so much medicine and my blood would still scream at me for more. They won’t realise that I don’t remember the conversations we had about coursework or whatever. They won’t realise that at points I genuinely feared for my life… And for me that’s just such a normal meaning of the world unwell – the only circumstance under which I would ever use it. So is my mind’s definition of the word “fine” (what I call fine should have me in hospital, and would have any sensible person in a COMPLETE panic). To me, fine means that I’m not going to come close to/actually meet the grim reaper within the next few hours (sometimes more), or that I’m pretty seriously unwell and on the verge of an emergency, but not quite in a disaster situation yet. But it isn’t normal. It’s this thing that I call normal.
And in reality, I have absolutely no idea what normal health is, or how it feels, or how it makes you look at the world. I find that kinda interesting, that nature can raise a human who without modern medicine and science, could not function as a human at all… And make it grow up feeling normal. It made me think a little.
I honestly have no idea how I made it through today. Hats off to my body, it is a very stupid yet very, very impressive little thing. I thought it might give out on me this time. I really did.
This isn’t the post I wanted to write (unfortunately for you guys that one will probably follow in a couple of hours) but it just felt more appropriate at this particular moment, as I lay here unable to do anything other than lay here.