“I don’t ever wanna stop
You could not have made it up
Who’ll catch me when I drop?
And stop me falling
Is this ever gonna stop?
Can you catch me when I drop?
I know there’ll never be no superman
But if I fall off this cloud
If I fall off, oh superman
I don’t wanna hit the ground
I don’t wanna hit the ground
I don’t wanna hit the ground
I don’t wanna hit the ground” – The Big Pink, Hit The Ground (Superman)
I am trying to do uni work, and I am trying to think, but I can’t breathe – it’s fast and laboured and it’s my body’s futile attempt to regulate the acidity of my blood (it’s called Kussmaul breathing and I know it all too well). I can barely keep my eyes open, and I’m home alone with my dog, who woke me at 6:30am this morning crying and shaking in pain (he NEVER makes a fuss when he’s hurt normally, not even after surgery. Naturally I FREAKED OUT, forgot how unwell I felt, gave him my quilt to lay against so his weight wasn’t on his hip, and just held him and stroked him for two hours because he freaked whenever I let him go).
Today I don’t even know what it is. I’m exhausted, but not just physically. I want to just crumble. And I want to carry on. The point is, I can’t carry on. Physically, this body is not letting me human at the moment, and trying to keep it alive is exhausting and increasingly difficult. I know I need a bunch of IVs. I know my heart is annoyed and my kidneys are annoyed and my blood is leading a mutiny against every cell in my body. I’m… Scared. I know I’m going to fall. And I don’t want to hit the ground. I don’t want to stop living this life, I don’t want to stop being out in the normal world, I don’t want to almost die again, I don’t want 8 attempts to get in a central line before they leave my neck alone. I don’t want to be in the process of dying as I write this. I’m so unwell even my mum was starting to get concerned before she left to go to lunch with her friend. I told her earlier that I have another migraine, because I’m not sure whether she’ll be helpful or just get angry and shout at me again for the ways in which my health has torn her life apart over the years.
It tore her life apart, and she got to shut it out. She got to shout, she got to walk away when she needed to… And I haven’t had that. There’s never been any pressure relief, no break, even for a second. Honestly, I laid in bed last night drained physically and emotionally, unable to move, wondering how on earth I’d made it through the day, with nothing left to give… And I knew that whether I had anything left to give or not, I was going to have to go through exactly the same thing again today. And tomorrow. And the day after that. And it isn’t just feeling unwell – it’s what that feeling means. It’s that which gets to me. It means the grim reaper is keeping tabs on me, clawing at my clothing but not able to take hold yet, waiting for me to slip, to stumble, to sleep through one 30 minute alarm… I have no idea how I’m alive. Honestly, right now, I have no idea how I’m alive. I’ve no idea how I’ve carried on over the past few days so clearly in a serious medical emergency. Hope. Luck. Stupidity. Home-made IVs. But now I’m breathing like I’ve run a marathon, and I can’t stop it. I also don’t have the energy to maintain it (fun when that eventually happens… NOT). I don’t even know what I’m feeling right now emotionally. It’s all rushing through my head to fast for me to be able to grab hold of a feeling and identify it, and at the same time there’s nothing. I just want to cry. I know it’s pathetic, but I just want to cry.
“Yep, that is a… HIGH heart rate” The pharmacist at my GP surgery remarked about an hour ago when I went for a medication review (this is the first appointment I’ve been to with any doctors at all in MONTHS). New medication was added, he told me my kidney function was variable and sometimes… Completely awful. I sat in front of him hoping my body wouldn’t betray me as we discussed Donald Trump and Toblerone. I was glad he wasn’t a doctor, because my body was SCREAMING that I was seriously unwell, and any doctor would have picked up on the signals right away (also paramedics who are buying their lunch and encounter you in the queue to pay, as I’ve learned).
And I can’t go. It’s like I’m having a fight with this big powerful thing that stands in front of me, and I scream at it and hit it but it won’t get out of my mind. It just reminds me what happened in hospitals before. It replays it like I’m there. And I can’t. I can’t get over it. I can’t get round it. And I lose myself in the frustration, in the helplessness, in how illogical it is.
“I owe it to me, now yesterday’s gone
Doing it on my own
I know I’m unique, wear my scars with pride
Doing it all alone” – The Big Pink, Lose Your Mind
Time to order pizza I guess. I’m not sure if reading this you know what it feels like to feel your life (or at least your consciousness) slipping away, but I’m there right now. And honestly, I am so, so exhausted that it’s almost a relief. I am past the terror. I just want to order a pizza and hope I somehow manage to get up off of this chair (my muscles feel like… I can’t even explain). And no matter what happens, this is my immediate future. This state. Right here. It will be my tomorrow if I somehow hold this off. It will be every tomorrow until something gives – it’ll probably upset another health hiccup, and maybe that will be the thing that almost kills me. I can’t even be scared any more. I don’t have the… I can’t even… Even. I don’t want to stop. I just want to… Just be present in my life and get to feel sort of my age. I just… This is sounding so, so ungrateful but today I don’t even know what I can’t even deal with because I’m at that level of not being able to… Even… Words.
I’m going to pass out now, excuse me while I temporarily lose consciousness.
No way but through.