Onwards

“I can’t believe we managed to get on top of this” my mother said for what felt like the millionth time as she cooked dinner yesterday. I’d managed to get out of bed and made it downstairs, where I became stuck, because my heart was (and still is) extremely upset about my body’s three day slip into severe acidosis. Like my healthcare team for this hiccup, she was still talking about me going to hospital. I felt better, but only because I’d been so near to the point of no return. Unfortunately, as a health professional, my mum had enough medical knowledge to understand how bad things had been and still were.

“You and I both know that you are still acidotic – it takes at least 24 hours on IVs and drips to correct it, I can’t believe you’re even considering leaving.” She said when I continued making plans to meet my godfather and his two young kids in London to go to the Natural History Museum today. I sat dazed, my heart racing, extremely dizzy, my head thumping, and breathing still a ridiculous effort. I still should have been in a hospital, I still needed IVs… but I still couldn’t face it.

If I’d been at uni yesterday I’d be dead. If I’d thrown up after my mum had left for work, I’d probably never have woken up again, because I had no idea that my heart was grumpy because of my pH, and was honestly in no state to do anything other than drift off and hope I’d sleep it off. It would have had me. There’s no doubt in our minds about that.

I checked my blood just before I attempted to eat some dinner, and the level of the chemical that had already been at way above safe levels had increased by 50%. It was still at levels high enough to be in a medical emergency, and did not want to dip below that threshold. I felt better, but things were still not good at all. At this point my mum told me I’d be going to the hospital if things didn’t improve by today. She said I was clinically still very unwell… And I was.

She couldn’t use any of her midwifery stuff to treat me at any point (other than using the blood pressure cuff to see what was going on there in the early stages of my dizziness) because she’s super professional and didn’t want to break any rules, but she’d had all the lectures on how to treat the very early stages of this issue when I was a tiny kid, and acted as a parent instead of a health professional (actually she kind of merged the knowledge she’d gained through each role). Once she got over her frustration, she came home from work and wasn’t angry with me at all (only briefly frustrated every now and again, but out of concern I think). We weren’t hugging or laughing or anything like that, but neither of us was frustrated with the other and that was so nice, to not be tense. She kept asking what would have happened if various things had occurred differently, talking about what could and should have happened, saying how unbelievable it was that I’d managed to stop everything enough to stay on the planet. She knew I needed to be in hospital, but she also knew there was no point in arguing with me – for a year I’ve done this alone, the health stuff, and I’ve learned to carry the weight. When I realised things were bad, I was worried at first that she’d just get angry and swear and say she couldn’t do it any more (as has happened when my health has broken her before) but in the early hours of the morning, despite her frustration, she was there. She wasn’t angry at me immediately, until she realised how serious the situation was, and the stress needed a way to be let out of her.

A lot of people didn’t understand my decision not to go to hospital. One of my best friends from uni knew how serious the situation was and knew I should be in hospital, and just couldn’t understand why I wouldn’t go. She asked me to think of her. She told me I was so brave and I had to be brave just one more time. It wasn’t about bravery, though. It was about breaking down or staying whole. My fellow third wheel understood. He knew I’d make the call that was best for me, and although he’d sat in an intensive care unit and seen the state I was in with bloods like those I had yesterday, he understood my reasons and supported my decision.

I tried to explain as best I could (just like I’m trying and failing to do now), but all even my doctors cared about was keeping a pulse in my arteries. None of them care about the state I would be in physically or emotionally, or the quality of life I might have. Nobody other than my fellow third wheel understood what going to hospital would do to me – I hit a wall, a mental block, a warped sort of panic at the thought of going to a hospital. I was filled with a quiet dread and a sinking feeling, and honestly thought I would have a mental breakdown if I had to go through it all again. I wanted to manage it myself, I wanted to at least try. I knew there’d be an end to the situation one way or another, and I wasn’t prepared to die emotionally to stay alive physically. There wasn’t a lot left to lose.

I thought long and hard about my decision and tried to talk myself around but I was reacting to a primative instinct, a part of me I could not control that overrode everything else. Nobody understood that. They acted like I was killing myself, like I was going to die if I didn’t go to hospital (to be fair this is a reasonable concern). I explained that the situation I was in kills within a few hours and that if I wasn’t doing something right I should have been dead a couple of hours before. I assured them over and over but they could use search engines and my uni friend does Biomed too and they both knew how serious the situation was, how unwell I was. They both, initially, asked (one of them begged and pleaded for quite a while) for me to go to hospital, to call an ambulance.

“What would you say if it was the other way round and it was me? Honestly.” My uni friend messaged me. I wanted to say that if I understood what she was about to have to face, the hell she was about to go through, the emotional state she was in and the level to which she was broken and unable to cope, then I’d support her and risk letting her go because I’d feel it was selfish to ask her to stay alive and suffering for my sake (not that I wanted to die. I mean, I don’t think I was even remotely bothered that such an outcome may be possible, because my emotional state in light of the health hell I’m going to have to face has left me a mess at the moment. But I wasn’t not going to hospital because I didn’t care. I did care, or I wouldn’t have actually tried so damn hard to save my own butt). But then, after playing the uni parent card and tugging at my guilt (before telling me to message one of them so they could talk some sense into me – she really did try every tactic possible), she finally told me to do whatever I needed to for myself, not for anyone else. I loved her for that. And I knew that she got it then. I was doing what I needed to do for myself overall. I was protecting my mind. I haven’t explained it right even here – it wasn’t me being awkward or stubborn, it wasn’t a conscious decision, I genuinely couldn’t go. I can’t explain it.

“I still don’t think we’ve stopped this.” My mum said before I went to bed. The level of nastiness in my blood had dropped to unsafe but no longer medical emergency levels, “Your pH is clearly still low, look at you.” Seeing as I couldn’t remove my eyes this was actually impossible, but I got the point. My body was in crisis still and it refused to stop letting me know.

One of my best friends from uni, who shall from now on be known as Uni Pal (even though we both refer to each other as banana pals – because I am a banana a.k.a idiot, and we both have our moments) carried on messaging me long after she caved and accepted that I was doing what I had to.  She’s the one that wants to train to run a marathon with me, and is convinced her heart will probably explode long before mine because she can’t run at all. We started talking about me going back to London, and she got super excited with me and started talking about all of her suggestions – things we are definitely going to make a reality – pub nights every Friday and runs every Sunday morning plus library visits (we plan to motivate each other, because I did way way way too much work earlier in the year and was too ill to do much at all; while she feels she didn’t do enough, and both of us want to handle our second year a little better). Uni Pal is dependable, persistent, stubbornly loyal… the kind of friend I don’t deserve at all but am beyond lucky and honoured to have. I cannot wait to go back to uni. My mum seems to think I will be going back to hospital instead though… NOPE. I am not ready for any sort of admission at all.

She’s also still convinced this morning that my pH is still low. I feel much better and can now walk around, but my heart is STRESSED OUT. My heart rate has been above 130bpm for over 24 hours now. It never dips below 100, but when I’m in bed, laid down and completely relaxed, it usually drops down to about 110, and stays there even when I’m sleeping… So, complete with weird feelings and low blood pressure, indicates to me that my heart is being a grump.

I went next door to return their door key (and attempt to return the money they dropped round yesterday to thank me for looking after their animals) and was offered two more jobs animal sitting, but she wanted me to have a social life, so she asked me to confirm once I was at uni and knew I didn’t have plans. I bumped into our very close family friends’ oldest son (he’s in his late 30s) who was working on their patio. He’s like a big brother to me, and was going to drive me (and his girlfriend and two little nieces, who came away with us before) to Holland to join both of our families on the holiday I was too unwell to go on. He told me I didn’t look very unwell and was the second person to tell me that they had been reliably informed by the guy I call Dad, that it was my own fault I was so unwell. I made him a cup of tea (in my neighbour’s house, yes, I know… but it is like my second home now) and he got over the “banter” that I hadn’t found funny, suddenly acting a little more… his age. If I had been in an emotional state to care about anything, his insensitive comments would have made me feel so ashamed and full of self hatred that I probably would have shut myself away from everyone for a few hours. Instead I went back inside to my neighbour while she was on the phone to various people, and hugged the puppy a lot. He jumped on my lap and went crazy. I was buried under a mass of overexcited cocker spaniel, which seemed determined to show his love by licking my face no matter how I tried to stop him.  Then my mum got home and found out I wasn’t in, so phoned me. She decided I would still have a pH that wasn’t quite normal, and told me to take it easy, being all,

“With everything your body went through yesterday I can’t believe you’d even think of pushing it.” So I caved. I sat. I stayed. I inserted a new continuous glucose monitor sensor into my arm, and the little contraption that fires the needle into my arm malfunctioned. When the sensor finally broke free and the needle was in my arm, it turned out there was no adhesive (these things usually stick fast and even after 2 weeks are IMPOSSIBLE to remove) so it just fell out in a blood covered mess. This was kind of a relief, because it had hit a nerve so I had pain tracking all the way down my arm, but still, those things cost £60 a go and aren’t covered by the NHS so… Not good.

The big brother that isn’t my big brother appeared on our doorstep a while ago, let himself in, and started making himself a cup of tea. My dog was so overexcited to see him, in a way that he never is for me. This would have made me feel a little rubbish about myself but thankfully I still don’t care about much. He sat with me for the whole of his lunch break (well, he spent a lot of time with the dog, who was the only reason he’s come round in the first place) and then, as he was leaving, he asked why I hadn’t walked the dog yet. I said I’d been really unwell yesterday and he paused, looked at me, and said, “That sounds like a load of bulls**t to me.” He’s only ever seen me unwell, most people have never seen me with good bloods. On a day to day basis I look the same, so to be fair, I couldn’t blame him. But I hate that I have to justify being unwell. I hate that paleness and grey sunken eyes and a look that on anyone else would be alarming and indicate that they were significantly unwell… is just what people are used to seeing on me. If he’d seen me yesterday, he wouldn’t have said that. If he could feel how I feel or live a day in my life, he wouldn’t have said that. But he can’t see. He can’t feel what I feel. My body malfunctions silently, below the surface, and I’m not like those people that sit and go on and on about how awful they feel (ok so maybe I do her but this is my space to just let some stuff out).

ANYWAY. Sorry about this junk heap of a post.

Tomorrow is the launch of my goal setting running sponsored ting. I definitely want to start it, but almost chickened out of starting a second blog and a platform through which to get sponsored because I’m still not sure anybody will be willing to donate 50p or £1 to what will seem such a pathetic effort. She seemed pretty sure that it is still a good idea, and talked me back round to the whole thing. So… I guess tomorrow I will be posting a link to another blog.

No way but through.

Onwards and upwards… just onwards, I guess.

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