My normal isn’t normal, and my fine isn’t fine. My acceptable is not acceptable in any other body, and the state I walk around in would have most people in a heap on the floor.
But they don’t know that.
Today I feel like there is a giant rift between me and the rest of the world. My friends think that because I went to hospital, I’m better now. They think that because I was let out, I am fixed. Far from both. I woke up today in a state that, had I left it and not injected into a vein every 30-60 minutes for 5 hours, would have killed me within 3-4 hours. Maybe less.
I woke this morning knowing what was going on in my body, but with no idea how to stop it. I messaged My Fellow Third Wheel and tried to get out of bed, eventually succeeding after a couple of hours, but after a shower I gave up on the idea of leaving my room, and relented. I got back into bed and hoped I’d feel less awful sometime soon. I didn’t (my improvement had plateaued), so eventually I just had to get up and get on with it. Dizzy and spaced out to the point that my vision and hearing kept going, I got dressed. My heart was racing, my head ached, I felt like I was going to throw up and pass out all at the same time… I was home alone and had been locked in the house, so I climbed out of the dining room window and walked to the shopping centre behind where my family live.
“You look SO tired.” Were the first words My Fellow Third Wheel said when I met him in the shopping centre, and he gave me a huge hug. He told me that for someone who a few hours before had been struggling to leave the bed, I was an idiot to have climbed out of a window and dragged myself out to meet him, when he was going to my house anyway. We talked. I bought some stuff I needed to grab (food and drink and flash-cards for revision… and dog toys for my everything – a chocolate labrador), and he insisted on carrying my rucksack because he didn’t want me to carry heavy stuff. He’d offered to grab anything I wanted/needed on the way over to my house, but I don’t like to feel weak, so I wandered around on the verge of unconsciousness and decided to meet him there. He knows what I’m like. He’s kind of my limiting factor in a really good way, in that he stops me being an idiot.
I didn’t want to face the world today. I didn’t want to see people because I just felt so disconnected. Healthy people can’t possibly understand and it is unfair of me to expect them to. People who don’t have physical health problems can only try to imagine, and in their minds I guess they compare stuff to the flu or whatever else they’ve had experience of (which is natural, we always try to relate things to an experience we’ve had). In their minds being let out of hospital doesn’t mean that there’s not a lot more you can do and you’re going to have to play Russian roulette every day, it just means that you’re all fixed. People were acting like I’m fine now, they were playing everything down and I was finally being realistic and no longer in denial, but they kinda shrugged off my reality as melodrama and told me I’m going to be fine and I’ll be better soon… and it made me feel ridiculous. It made me feel dramatic and pathetic and it made me feel… Alone. So, so, alone. So I withdrew. I stopped replying to everyone to save my emotional state. Everyone except My Fellow Third Wheel, who seems to possess some sort of magical power to make everything feel ok.
His was the only company I could tolerate, except I didn’t have to tolerate his presence, I enjoyed it. He knows me in a way few else do. I can just totally chill out around him, I don’t even have to change out of my pyjamas (obviously I did today because I went out in public) and we can just sit in silence together for ages sometimes and it’s good because we’re alone but not and together but not. I didn’t have to pretend to be something I wasn’t and yet… I still couldn’t let him in. I couldn’t let him see the mess that I am, I couldn’t open up, I couldn’t say that I wasn’t ok, that I needed him and damn it could he please be there. I didn’t know how to say any of those things, so I listened to him tell me about a girl he’s super close with who has been having a hard time at uni (so he’s going to stay with her this weekend, and over the Christmas break he’s going to do something with her every day to get her out and doing stuff). I opened up a little bit, nowhere near to the level I used to with my ex-uni parents, but more than anyone else. He’s so chilled out and logical and sensible, and he’s also ridiculously blunt. That helps. He helped. He listened, and he was all When was this? and Why am I only just hearing about this? and Why didn’t you call me?
And then he was all I spoke to you for half an hour the other day before you even told me you were in hospital. Why did I only find out you were there on the day you were leaving? I only found out you were even in hospital because a nurse spoke to you and when I asked what was going on you said where you were.
I had no idea you were in such a state, you sounded so happy on the phone.
I do. At the moment I do. At the moment I don’t know how to talk to anyone, don’t know how to let them in. So I act happy. Or (more commonly) I just don’t say that I’m not. But he saw through that. He sees through that. I needed somebody to see through that and then not only to stop there but… To pull me out. He’s the only person right now who figured out how to pull me out. He’s the only person whose life is free enough of issues for him to have the capacity to truly take on mine. But… That’s why I didn’t tell him.
Because all I could think back at him was You’ve done enough. You’ve done so much. You’ve put up with so, so much of my crap. You sat by a hospital bed with me for days, you slept in waiting rooms in ICU, you bought me food and you lost sleep, you hugged me when I was scared and while I cried and when I lost my mind. You were at the other end of the phone right up until I went to uni and… then the thoughts came out loud
“I didn’t think you’d be there like that any more. I… I didn’t think I could go to you with stuff like that. I didn’t think you’d want to hear it. It isn’t fair.”
We sat on the sofa for hours and he showed me stuff on his phone. We laughed a lot, and I forgot. I forgot everything. We walked my floof (dog) through the woods. I was meant to walk him myself, but My Fellow Third Wheel didn’t want me wandering around alone, so he took the dog and walked with us in the freezing cold. In the middle of a field the three of us took a selfie together, and in that moment I was so calm and happy that I’m glad I captured it. We encountered a German Shepherd dog and instantly turned around. It wasn’t on the lead or muzzled and ran at everyone and everything barking and growling. It bit a dog in front of us and I freaked. My Fellow Third Wheel gave me the dog’s lead and told me “Don’t be scared, it’s alright. I’m here. I’ll stand between you and it.” That. Right there. Is a true pal. I felt safer. He did put himself between us and the dog as it charged at us over and over again growling. My dog walked away when I called him, but when the German Shepherd came near me, my dog started to growl and I got super scared there was going to be a dog fight. My Fellow Third Wheel took the dog lead back from me and walked on, kind of comforting me at the same time.
I only walked a short way home, as we parted ways so he could go and catch the bus home. We messaged for a while, and I told him to call me if ever he freaked out again (as he sometimes does, leading him to wander around the world at 2am). He made me promise to do the same. I asked him if he was sure too many times to count. I told him it wasn’t fair, I told him I didn’t want him to end up hating me. I told him that everybody I’d ever let be there had dropped me and walked away and that I didn’t want him to do that.
That’s the wrong attitude you sh*t
U lil sh*t
He sent me messages like that, until eventually, after him going on and on and on, I put two letters
And he celebrated and made me swear to stay true to that deal. The thing is, I said no because I was thinking of him, but all I wanted was to say YES, PLEASE BE THERE I CAN’T DO THIS AND I NEED SOMEONE AND PLEASE PLEASE JUST BE THERE. He knew that. He, like so many other friends, told me to stop thinking so much of him and consider myself for a second too. He said if he can’t deal with something, he’ll tell me. But I know what a burden all of this is. I know what a burden it is because I live it and it exhausts me. I don’t want to spread that or share that.
But I am so, so glad to know he’s there. It feels so great to know I’m not alone. He has chronic fatigue syndrome, so understands the health aspect of my life more than most. He gets things in a way most people can’t. My brain seems to like that. (My other friends have been amazing too, and they want to be there, but I don’t know how to tell them how to be or even how to ask, and they have no idea how to be there in a way that’s helpful. They think things are better now and that I’ve no reason to worry any more, no reason to stress about my health, and that makes me shut myself away from them. Because I feel misunderstood and I don’t want to keep having to say it out loud – reality).
My nurse phoned me up while I was still walking my dog (after a few months of not responding to any calls/emails/texts from any of my nurses/doctors/consultants I finally for some reason picked up the phone) and during our conversation she told me a treatment option that may help me a bit costs £580 and then £200 in regular instalments… She wanted me to deal with stuff. She wanted me to make phonically and text her numbers and go to my GP to get vials of medication and stuff… And then, had we been in an episode of Thomas The Tank Engine, this would have been how the script was written:
Nurse: How have you been doing, by the way?
Me (internally): HahahahahahahaNOPE
Me (out loud): Good
Narrator: Things were not good.
Nobody has any idea just quite how badly, or how seriously unwell I am right now. They couldn’t comprehend it, and they don’t, even when I try to explain. I look normal to my friends now, but my “normal” is actually quite seriously unwell, and I feel awful in ways they couldn’t imagine. My “normal” would be their dying. It kind of saddens me that nobody notices that I look unwell now. It saddens me that that has become normal, and that people think that’s me looking well. I showed them a picture of me well the other day and they couldn’t believe it. I looked like a different person. There was flesh on my bones and so much more colour in my skin, and I didn’t look “anorexic when you’re not even anorexic” as My Fellow Third Wheel says. They think I’m fine. And I am so, so far from fine. They’re happy and relaxed and how do I ruin that? They think I’m out of the woods, but I’ve only just wandered in. They think I’m in less danger than I was before I went into hospital, they think all of that is gone. They say they know I’m unwell “but not as bad as before right?” And how could they ever, ever understand? They never will, and I hope they never have reason to because I never want them to be able to relate to and therefore properly understand this. My friends are being amazing. They are there and they are trying but I feel so, so alone emotionally.
But with My Fellow Third Wheel… I don’t have that. I feel like this mountaineer with an ice pick has just hacked through the ice to reach whatever of me is left inside of whatever of me wanders around. And he has no idea how grateful I am for that (I tried to tell him, I’m bad with words right now).
I should probably do some uni work. I should probably do something. But I’m too unwell to do anything. I just can’t. I’m too unwell to even try. I’m unwell enough to use the word unwell and that’s a word that makes me cringe. Usually I say I’m Tony (one of my friends said I’m like “Tony Stark” in that I shouldn’t actually be alive, so she always asks how Tony I am today) or how stable I am (another friend figured out that ok is something I’ll never really be and unwell is something I’d never call myself).
I know I need to go back to hospital.
And I can’t go back to hospital. My own mind will not let me go back. I’m still waking drenched in sweat and tears from the nightmares induced by this admission. I can’t. This morning I laid there knowing how close I was to kicking it (far closer than anyone should be when they wake up in the morning), and I just thought I can’t do this any more. I don’t know how to do this any more. And people will call me brave for carrying on. But they’re wrong. What other option is there? There is no option but to carry on. There is no option but to hurt and fear and struggle and just… Try. There is no other way. Either I’ll get through stuff, or I’ll die trying, but either way…
No way but through.