Over the past few days I’ve been thinking about where I was a year ago. Mostly because the internet is full of teenagers posting about going to university and their excitements and fears in all sorts of blog posts and articles, but also because I’ve been finding things. One of these things was a notebook, and in that notebook I’d kept a diary/ drafted all my blog posts last summer. I found that notebook exactly a year after I wrote about going to have surgery to insert Reginald into my chest. A year ago today, I’d just got over recovering from that surgery, and the wound had finally stopped bleeding at every given opportunity. I had very, very short hair (because due to health reasons and a drug that my hair follicles clearly had an argument with, it had all fallen out earlier in the year). I looked like a toilet brush, or at a push, a boy who had never even heard of a comb. I’d had almost shoulder length, thick curls… and at that stage my hair was about 1cm long. My sister took me out to buy a load of headbands that summer, and some of them stretched out to look like bandanas which disguised my issue nicely. Now, I look in the mirror, and my hair is finally long enough to tie up again. This is only something I’ve been able to do in the last month or so – I can get it into a high ponytail instead of my old familiar low ponytail (if it isn’t a high ponytail then some of my hair manages to escape)… but I’ve come so far since then. And I’ve been through so much. So. Much. Uni certainly wasn’t as supportive as I hoped it would (or anywhere near needed it to) be. But this isn’t a big long ramble about where I’ve been.
Good things are happening now…
I finally got my uni timetable last night. You’d have to understand how much I love and have missed my degree in order to appreciate how stupidly excited I became at just the sight of a timetable full of lectures. I couldn’t stop smiling. I wanted to be back at uni even more than I have done for the past EVER, and appeased this urge by scrawling the lectures into my academic diary in some sort of feeble attempt to convince myself that I will be thoroughly organised throughout this year of study.
My godfather called me out of the blue on his way home from work to see if I was feeling any better after I bailed on plans to meet with him and his two young daughters the other day (who apparently kept asking if they could visit me if I went to hospital, and asked over and over where I was… I felt so guilty!) He treats me like I’m his own kid, and when I was a toddler he was the closest thing I ever had to a dad. He’s known me since I was a baby bump, and even my grandparents acknowledge the fact that he is practiacally a parent to me. It was so awesome to be called “sweetie” and “sweetheart” and “darling” and told “love you lots” at the end of the phonecall. Like… Damn. My heart flew. Those words were like a comfort blanket. When he sees me, he actually hugs me. This is something my dad does with my little brother, and my sisters, but never me. So it’s super nice when my godfather just pulls me into a cuddle and sits chatting away like I’m his first born. Hearing from him was so nice. I felt all super loved and wanted and he wasn’t irritated by the inconvenience that my health had caused. He hasn’t had time to grow sick of it yet.
After this point, I woke up at 10pm. I’d fallen asleep on the sofa and been wiped out for who knows how long. I noticed that a comment had been left on my last blog post, and read the longest (and possibly nicest) comment anyone has ever left on this blog. I’m mentioning it here just so that person knows quite how much it meant to me. It did a lot in getting through to the stubborn old part of me that I can’t override, the bit that puts itself down without anyone else having to prompt it, and goes into complete overdrive, spiralling me into guilt and self hatred and shame at any given opportunity. I felt like less of a rubbish human being, and more like my feelings (back when I was actually capable of them) had perhaps been justified. There wasn’t too much time to linger on this though, because I then woke up enough to note that I felt unmistakably acidotic. My blood pH was dropping again and my body was in full revolt at the idea of this. (I get no symptoms of acidosis any more apart from, apparently, an overwhelming tiredness when I get close to the point of no return without urgent medical attention). I genuinely thought to myself Oh heeeelllllllllllll NO. Severe acidosis (or acidosis of any severity) would mean that I couldn’t have the surgery I’m scheduled to have tomorrow, and also that I wouldn’t be able to swim today (my brain didn’t seem too fussed that it is a life threatening medical emergency that needs only a few hours to ruin a life).
I did a HUGE injection and gave in to the sleep again. I just about settled things down, but when I woke up in the night I could taste the unmistakable taste of the acidic chemicals on my tongue – they were in such high concentrations in my blood that my body had started exhaling them in my breath… This isn’t unusual for me, I can frequently taste this taste, but never this strong unless I have a serious problem. Even toothpaste wouldn’t take the taste away. I drank litres and litres and it wouldn’t take the thirst away. I peed out more than I could put in because my body was just trying to flush everything out of my blood… but I am still retaining a ridiculous amount of water, and eventually got to the stage where I could feel it on my lungs again and began coughing for England instead. I really need to find some diuretics. I’ve now gained over 1 stone in weight over the past few days.
I woke up this morning with the start of a cold. The voice that came out of my mouth didn’t sound like my own. It was actually very refreshing to be “health person ill” for a change. A cold won’t keep me down… it will give me a chest infection and outrage my health hiccups until they hiccup and start a chain reaction that goes on for months… but the cold itself is… maybe not so harmless actually, now that I put it like that.
I slept my morning away on the sofa, fully clothed and ready to go swimming… But everybody (including Uni Pal, who is usually the number one supporter of my ideas) said do NOT swim. I still considered it for a while, but I really want this surgery to go ahead, mostly just so I don’t have to hurt so much any more and can get some sleep, so… I let my body call the shots just one more time.
I was really not hungry (VERY unlike me) so I waked to the shops and bought some more appetising food to tempt myself. I didn’t enjoy it, but it is now all happily sat in my stomach, so at least that’s something. As I went to walk into the supermarket, a woman’s voice stopped me,
“Excuse me!” I turned around to see my first ever swimming coach. I went to say hi. She gave me a stranger’s stare, looking at me blankly, not even a hint of recognition in her eye. “Your backpack is open” I looked. It was not zipped up at all, and I was pretty alarmed that I’d left the house like that. But my heart also sunk a little. It has been so long since I swam for that club and passed her teaching the younger kids, that she doesn’t even recognise my face any more. It stung.
I came back exhausted, but I wanted to work more towards my challenge for the month, so I walked my dog just over 2km, and actually thought I was going to pass out 20 minutes in. I couldn’t breathe, my muscles were screaming. I got home and my lips were blue. So… I went uni shopping (with my 16 year old nephew, just in case) and bought some stationary with my nephew, buying some potatoes for dinner (because all my dad can cook is sausages and potato) and getting a door key cut for my nephew in the same trip.
No idea why I bothered to write that, I’m tired, slightly tipsy (alcohol was not my plan for the night before surgery, but hey, this was not my plan for this week so…)
On the subject of surgery, there is awesome news about how I’m going to get there. For the past week neither of my parents have been able to take me to my (minor) surgery. They both had better things to do, and I don’t blame them for valuing their happiness over a crappy surgery to be honest, especially given the short notice. My mum’s solution was to tell me to go and stay with Aunty Godmother and get the train up from there (which would take almost an hour) because there was no way my dad would give me a lift. When that wasn’t a workable plan, it was suggested that I ask among my friends for a place to stay the night before, and see if any of them were around. Last night, somehow, I managed to talk myself into a lift. My dad is going to drive me to London (right past where I will be living again in under two weeks, and past uni/ heaven on earth!!! I CANNOT WAIT) and drop me off near the hospital. He isn’t stopping. He isn’t getting out of the car. He’s made it clear that he is literally taking me there and turning straight round. But I CAN GET TO MY SURGERY NOW and that takes away a significant dilemma. I do need someone to stay with me there and be with me when I leave, but he said he will pick me up… I hope that means he will park up and collect me. I don’t mind that nobody is going to be there to sit with me after Uni Pal leaves… She was asked to get into work for 7am and told them no, she’ll leave me at 9. I felt awful and told her to just go to work. She refused. I found another reason to call her awesome, and I think at that point I may have downed one of the ciders that my parents brought back from France.
But yeah. My friends aren’t impressed at how my parents have handled the surgery situation, but it honestly isn’t their fault. They have lives, and their commitments may not seem big or important, but it is important to me that they get a break from me ruining their lives (as they will deny now but shout when they are angry or frustrated at my health… actually not my dad, because we don’t actually talk unless he’s telling me off… but yeah…). I can’t even imagine how tough this is on them, but they don’t look at me like they look at my little brother. I see hurt in my mum’s eyes. She gets defensive and bitter and takes everything to heart when I don’t look happy. One minute she wants nothing more to do with anything and the next she’s turning up at my next appointment and kicking off majorly when I ask to see that doctor in private… But it’s because my health has torn this family, and the lovely people that make it up… into shreds.
Ok no wait no. There is a lot of family stuff, none of which will ever be said anywhere. My dad hates me. He makes it obvious with his behaviour and it makes me hate me too. Anyway. Surgery and all that jazz… Yeah… End of post.
See you on the other side of a general anaesthetic, if not before (I seem to post when I’m bored, and waiting for surgery is boring).