I can’t really remember what was said. I know it was preceded with an apology of sorts, and that at some point words that went something like, “But I mean, I wish I was you instead of me, that a simple surgery could fix things” came out of my phone. It was sad to hear the views an eating disorder had imposed on an amazing individual who is one of the best friends I have at university. It made me so frustrated at the world that there wasn’t better help available for her. She’s genuinely one of the funniest, nicest people I’ve ever had the pleasure of meeting, and has put up with some crappy health issues as a result of a cruel and often misunderstood illness – eating disorders are not trivial, and I got frustrated at society for the lack of understanding it displays as our conversation, and that particular moment, highlighted the ways in which they can tear a life apart.
Such a statement also highlighted to me that a lot of the people I know have no idea what’s wrong with me. Surgery isn’t going to fix all of me. There’s a 50% chance it isn’t even going to fix my heart. It certainly won’t sort out the thing that nearly killed me last weekend, it isn’t going to reverse the destruction of my beta cells that led to type 1 diabetes, it won’t make my immune system function any better etc… And it also made me realise that nobody can really comprehend how awful I feel all the time, apart from a couple of consultants who managed to apply their medical knowledge to reality. And then a conversation with someone else made it really hit home that nobody understood what I was going through, what I was up against. I was glad they couldn’t comprehend it. I was also suddenly so, so, alone. Isolated. Misunderstood. I didn’t want to human any more. I wanted to give up. A lot of my friends don’t understand how serious the situation is. I want them to understand and I don’t want them to see all at the same time.
I didn’t realise the gravity of the whole swollen feet/ankle/leg situation until I stepped on the weighing scales this morning out of curiosity (pun fully intended) and discovered that since leaving hospital on Monday night, I have gained over a stone (8.59kg to be precise). I’ve been trying to gain weight for a long time, and been steadily losing it despite consuming up to 6,000-7,000 calories per day. Finally tipping things in the direction I have for so long desired to head in, is now bittersweet. I can still see my ribs if I stand in front of the mirror, yet my legs are so swollen that I can hardly use them. My shins are as thick as my thighs were this time last week (not even exaggerating, I measured with my skinny jeans) It turns out that rapidly gaining that much water weight is not really compatible with functionality.
Earlier in the week I was offered an appointment with the new consultant that joined team excuse me body but you aren’t dying today upon meeting me in resus last Sunday and deciding that I was still worth trying for (many others have given up on me). The administrative staff were apparently told to fit me in to see him wherever they could, as soon as possible, as I am apparently ‘an urgent case’. Unfortunately, when they phoned to tell me this, it became apparent that the appointment clashed with my FINAL exam next Thursday (yes, the horror is almost over). While they are busy trying to squeeze me in somewhere else, I am trying to manage things myself, which involves a bunch of extra injections every couple of hours, and finally the support of an entire team of people who are using their brains to try and maintain the functioning of the body that keeps mine alive (by thinking for the organ that malfunctioned before I knew what it was for).
Finally there is a safety net. One that functions well. I’m scared to need it, or to rely on it. But this new team is pretty amazing, and much closer to my family home, so I won’t have to go to London so much over the summer to see the equivalent specialist team there.
This morning I received a phone-call from the new specialist nurse who is involved in my care as part of that team. A team that, for the first time, I feel in control of, and part of. We talked everything through, and I didn’t feel like a bother, or a nuisance… I felt less alone. This team is only dealing with one health problem, but I mentioned the fluid retention anyway, even though it’s more heart/ kidneys than anything else. I was told to go get it sorted. Today. And I knew that I had to deal with it, but often my brain just needs a little push in the right direction to get the ball rolling – when it hears my thoughts from the mouth of someone else suddenly they are justified. It feels less stupid. It feels ok.
When I hung up the phone it didn’t feel like my hope fell through the floor. I didn’t hit rock bottom with a thud and keep tunnelling away until there was no light at all from any direction (seriously I’m pretty sure I’ve dug so deep into rock bottom so many times that I could get a degree in geology). I wasn’t full of frustration at being so unwell and feeling like the only people in the world who could help me had given up. She understood the gravity of the situation. She understood how unwell I felt and shared my same focus on getting through my exams. I felt worth something. And why am I telling you all of this? Because it felt amazing.
My body has been essentially killing itself for so long now. This year alone it has nearly succeeded far, far too many times. I have been facing things alone that I cannot possibly overcome, both physically and emotionally – and the former significantly impacts the state of the latter.
After last night I was almost broken. I didn’t want to do it any more. I wanted out of existence. I couldn’t deal with the idea of carrying on alone – couldn’t face the isolation and the loneliness and the misunderstanding that being so unwell can generate from time to time. And this team of people, even if they fail in their aim like so many before them, have already saved me. Because they get it. They get me.
When I hung up the phone this time
Do you know how long it’s been since I’ve been able to write those two words? How long it is since they’ve been true – without me just feigning a smile to protect those around me or stop myself from crying?
She gave me back my smile.
And I broke down in tears.