This morning I laid 8 train tickets out on the kitchen work surface – the tickets I should have halved with one of the nicest people on the planet and used to travel to Edinburgh yesterday morning; where we planned to spend today building bears in Princes Street and taking photos of the castle and walking the Royal Mile before eating in the Thai restaurant we booked, watching the sunset from Carlton Hill, and returning to our amazingly cheap yet equally as amazing(ly?) luxurious city centre accommodation… And instead of doing any of those things, I made sure all of the tickets were there, put them in an envelope, and looked up the address I need to send them back to in order to be refunded for their price (minus the processing and cancellation fees which crept up on me and my student budget like financial ninjas).
I felt awful looking at the tickets. This was not the first time this year I made (proper, adult, functional) plans to spend a weekend in Edinburgh and never made it because of health hiccups. It was the second break/ holiday in two weeks that me and my health had ruined for the incredible people I am lucky enough to call my friends (this time only one, but she’s nice enough to count for several people) and I was so angry at myself for that, even though there was nothing I could do.
I met the person I had been planning to spend the weekend with anyway. She came to my family’s house, told me off many times for apologising about Edinburgh because she’s far too nice, showered my dog in cuddles (which he was very pleased about), and nearly cried when I played her the song that for the last couple of days I don’t seem to be able to stop listening to (X Ambassadors, Unsteady). We went to an Italian restaurant near my house for dinner. We could easily have walked – well, I say “we” but there is no way I could have walked that far, comments had already been made about how well (or in fact the complete opposite of well) I looked.
It was so amazing to immerse myself in normality, to dive back into the normal world and walk into a place where nobody had any idea that I had recently been in an intensive care unit. My continuous glucose monitor was visible because it is implanted in my arm and it was so hot today that I wore a short sleeved t-shirt to go out. The dressing over the (very unwilling to heal) wounds from my central line and stitches in my neck hid the still raw and painful little cuts in my skin nicely. My insulin pump was hidden in the thin and unnoticeable cycling belt I wore under my top, and only a tiny fraction of the wire poked out of the bottom of my top because it refused to stay tucked away. I could pass as a normal human being. Nobody had any idea how unwell I was in that moment, and that sensation was like a drug. It felt awesome.
No worries, no difficult conversations, no fighting to get somebody to make a plan that will keep me alive instead of just watching me very nearly fail at that task over and over for fear of being responsible for the results… Just me and one of the nicest human beings I’ve had the pleasure of meeting, talking about secondary school and sixth form (sparked by the sight of someone from our year group – who DJ’d at my 18th birthday party and is still dating someone else we used to go to school with – serving meals from and taking empty glasses into the restaurant next door).
I relished in the opportunity to forget about all the rubbish and all the stress for a little bit, to pretend that I wasn’t “fighting” some health hiccups (people always want this to be a battle. It isn’t, because there is no opponent. I am “fighting” myself, my own body, my own cells… Me. It isn’t fighting. But I have no other word for it, so we’ll just go with it for now)… No parents to frustrate or infuriate or break or hurt or disappoint. I just looked like everyone else. I was extremely grateful that as a species we are shallow enough to judge a book by its cover. I was beyond grateful that my cover hid the disaster unfolding within the pages it hid away. I relaxed. I carried on messaging my fellow third wheel while my companion and I spoke about two individuals whose insensitive comments wrecked my mental health for months and months (and decided that I should finally let them know how they made me feel… Addressing them politely and without mentioning their names… In a blog post they will never read… But hey, closure is closure and I’ll take it).
And then we took a slow stroll up to the supermarket, past one of my childhood best friends who was closing up a popular café (and didn’t see me, but I would’t have known what to say at the moment anyway so this was a relief). I wanted a notebook identical to one that I’d bought to write my writing ideas and stuff in (which is now full of lists of how the hospital screwed up, recordings of every single blood result they took while I was there, what IV they gave me and at what rate and why, test results, what each doctor said to me and when and who witnessed the conversation… I am on it, because nobody else seems to be).
And on the way to the stationary section we became hideously distracted by the book aisle. There isn’t anything I love too much more than a good book – literature will always be my first love and the characters in books were my childhood best friends. I always used to spend all my pocket money on books from a teeny tiny age.
£1-£1.99 books. Bestsellers. Of course I came home with 10 novels. I like to branch out into different genres and sample the works of different authors, and I don’t mind taking the risk for £<2. I’ll always take a book over a downloadable file.
I also bought a little student cookbook (FINALLY) with 200 healthy, quick (and thankfully as cheap as they are delicious and fancy looking) student-friendly meals… Because the room in my new student accommodation will have its own mini kitchen, and I love to cook but need inspiration.
On the subject of cooking and diet, I have decided to try and cut gluten from my diet completely (yeah… My GI tract does not approve of gluten. Pain occurs to the point where I sometimes don’t even know what to do. My abdomen also blows up like a balloon… I’ve decided it really isn’t worth it). Gluten free food is unfortunately almost as ridiculously expensive as the gluten free cookbook I picked up and swiftly put back; however, stuff with gluten in it is also usually full of carbs. Which fed brilliantly into my other plan.
My body is really rubbish at knowing what to do with carbohydrates at the moment, especially as my insulin is rarely absorbed anywhere near enough and so carbohydrate just sits in my blood as glucose (until my overworked kidneys kick it out, taking a lot of water and electrolytes with it, which leads to huge fluid shifts and dangerous electrolyte imbalances that annoy my already grumpy heart) and slowly causes untold damage to my capillaries, kidneys, heart, nervous system, eyes… (Glucose, like a lot of stuff we need to survive – including oxygen – is toxic to the body in large quantities, and my blood glucose levels usually read off the scale – above 33.5 – Not. Good. But this no longer makes me feel unwell because my body has unfortunately just had to get used to this. It’s the other stuff that gets me). So I’ve decided to start having carb free days. 4 a week at first, with days in which my body will freak out in between. I’m hoping, although this won’t stop the medical emergencies that come calling for me once or twice a month to shove me into resus and force me to shake off the grim reaper again, that it might make me feel a teeny tiny slight bit less like death. And I’ll take that right now.
On the grand scheme of things, this isn’t going to change a lot. It isn’t going to save my life. It will not stop my health hiccupping in ways that allow the grim reaper to introduce me to his boss (Death), who thankfully never answers his door when I knock on it (In order to pull me out of my denial a doctor once said to me, “You weren’t knocking at death’s door, you were at it with a battering ram. You’re lucky he didn’t answer!” Rather than hitting the point home to anyone other than uni dad, it left me in admiration at the metaphor, which I now like to use myself).
Right now I feel scarily unwell. I cannot function. I am freezing cold to the touch but drenched in sweat. I feel sick but I don’t have the energy to empty my stomach. My head is pounding. The room is spinning (which is interesting because my current vision issues already make things disorientating). I am at the stage where I hardly have the energy to breathe again and each inhalation takes conscious effort…
But I am trying to move away from death’s front door. Even though my feet are already on his welcome mat.
IVs and hope and sleep will see me through until tomorrow.
I already have a load of tickets to nowhere. I may as well take the ride.
No way but through, I guess.
(Edinburgh is clearly not the way through, according to circumstance – got to have a little bit of humour right?).