I’m sitting up in bed, wrapped in a dressing gown and looking at a bottle of long-expired cough medicine. Earlier, I went on a mad spree around the house, determined to find some sort of drug to knock me out or at least calm me. I eventually found a dusty old bottle of Jackson’s All Fours in the kitchen cupboard, stashed behind the tubes of toothpaste and all-natural cleaning products my mother is obsessed with. The use-by date is 2003, and the word “chloroform” keeps catching my eye. A quick sniff of the contents suggests that something has deteriorated in there, and common sense tells me to stop being silly and that drinking it is nowhere near being an option.
However, I’m tempted. I’m almost disgusted by my temptation; I feel like a junkie grabbing at anything for just one more fix. I don’t even know if it’ll work, or harm me in some way (Google gives no real clues), or will simply taste like shit. I’ve already resorted to some Bach Rescue Remedy – I don’t even believe in homeopathy – and I’ve been drinking Ovaltine like a fiend in the hope that somehow the warmth and comfort will slow my brain down for just a short time, enough to allow me to breathe.
Two things set me off today, the first being the eczema which has now plagued me for around eight months. The official name for my particular brand of skin-lurgy is pompholyx – a blistering, peeling, cracking and incredibly painful version – and today I finally lost my cool and went a bit mad because of it. The soles of my feet are both covered with big, itchy blisters and large cracks where the skin has split. I have a hole on one foot where the skin has almost totally eroded away, which burns and is agony to touch. It’s on my hands too, but for now that is somewhat under control. Topical steroids – the strongest ones available on prescription – simply aren’t helping anymore. Nothing gives relief, and I’ve tried everything. The only thing which helped was oral steroids (prednisone) at a high dose, but the rash never cleared up completely and the blistering and pain came straight back when the dose was reduced.
My dermatologist was supposed to send me an appointment, but I’m still waiting to hear from them. I’ve phoned the department and they just say I have to wait for the letter. I’m half tempted to amputate my own feet with a kitchen knife.
The second panic-giver was discovering one of my old diaries from 2006 in my mother’s bedroom. I know for a fact I’d thrown it away, and I can’t begin to understand why she’d rescue it from the bin and keep it. I know she finds me difficult to understand, but I’m fuming over the breach of privacy. I was trusting her again, after years of not knowing whether she was spying on me, and now I can’t feel that trust. Something’s been shattered, and I don’t know how to fix it. I sat down with the diary and started to read through it – big mistake – and ended up thoroughly depressed. I was such a mess; utterly fucked-up, in fact. I’d forgotten just how bad things were. With the benefit of hindsight I can also see just how wrong I was to put my faith in the general goodness of people.I wrote about how “I knew O would never hurt me“… I was so wrong, and so damn blind.
I’m also feeling guilty (yet again) about neglecting the people who read this. I know I’ve been told, over and over, not to worry about replying to comments, but it’s difficult not to when I’m still unsure why anybody takes the time to look at my ramblings. So, you know, I’m sorry. Sometimes communication is the hardest thing for me to allow myself.
I briefly wrote yesterday about ending up in A&E. Last Wednesday I woke up with more ankle/foot pain than usual and when I went to stand on it, I couldn’t. The pain was unbearable; I felt like somebody had smashed every bone in my foot while I slept. It was so swollen that I could hardly get my boot over it, and even putting a sock on hurt like hell. I couldn’t walk on my left foot at all. After a lot of umm-ing and ahhh-ing from my mother (“but we have to do the shopping!”) we managed to get me into a taxi. I have a deep loathing of our local A&E department after they royally fucked up my treatment over gallstones, but the pain was incredible and I couldn’t see any other choice.
I really wish I hadn’t bothered. After a mercifully short wait, the triage nurse called me into a small room, asked me a few questions, then sent me to minor injuries. I still don’t know how I managed to get there; I decided that a mixture of hopping and limping was the only way. I sat with my mother in the dingy minor injuries unit, holding my leg in the air like an idiot since any pressure on my foot made me want to be sick.
Whilst I sat there, staring at the orange and brown lino flooring and listening to my mother witter on about everything and nothing, I considered just how many times I’ve sat in hospitals, waiting for very little to actually happen. This time was no different.
When the nurse (not a doctor) called me in, she didn’t watch me walk or offer any help. When I finally half-fell into the open-plan examination area, she told me to take my boot and sock off and kneel on the chair. I didn’t understand what she meant – I was tired and in pain – and I could tell she was thinking I was a bit of an idiot. When I finally clocked that she meant to kneel backwards, I did so only to feel like she was sticking a huge knife in my ankle. Turns out she only tapped it, but I could have cried. I explained that three months ago I had hit the back of my ankle on the top of a glass bottle while swinging my leg off my bed, and she said that it wasn’t worth x-raying my foot because the trauma was a long time ago. I was sent away with weak painkillers and an appointment with the physio department. I asked – in all seriousness – how I was supposed to get to the other side of the hospital when I couldn’t even walk, and she said “get your mum to do it”.
I was fine until I got out of the room. Once my mother had managed to haul me towards the exit doors, I burst into tears and collapsed against the wall. I couldn’t take the pain. I couldn’t take being dismissed without even a bandage. I couldn’t cope with the NHS telling me to just get on with it, like I’m not a real person.
Crazy took over. My mother managed to get me outside before I totally flipped. I screamed. Shouted. Cried. Told her I should never have been born, and meant it. Full-blown panic attack mode swept over me and all I could see was a pointless future. I wanted her to go away, so I could somehow get to the main road and stand in front of a truck. I’d given up entirely, after years of being dismissed and treated like a nobody by the health service. Chronic pain? Dismissed. Infected gallbladder? Called a liar. Pelvic pain and flooding? Just women’s problems. PCOS? Not worth paying attention to. Threatening suicide? Told it’s just stress.
Somehow, I eventually calmed down, but not before summoning an adrenaline reserve and hiding around the other side of the hospital. I sat on the same bench I sat on all those years ago when I was being treated like a fool on the wards, and cried my eyes out. Nobody gave me a second glance; I suppose people crying outside hospitals isn’t all that surprising.
Initially, I thought there would be no way I’d be able to go on holiday with S. I eventually found some inner strength though and decided that sitting at home, in pain and feeling sorry for myself, wasn’t going to achieve anything.
The holiday itself was wonderful, even if I did struggle with some pretty extreme fatigue. Stronger painkillers helped with my foot, and being around S the whole time kept me calm. We stayed in a big cottage in Snowdonia National Park, with two living rooms, bathrooms galore, a hot tub and sauna, and a huge country-style kitchen. I forgot my camera so only managed to get a few blurry pictures on my mobile. This was the view from the bedroom window:
I’d go back today if I could. S and I spent most of our time reading in the snug, accompanied by a woodburning stove and plenty of red wine. I felt like a bit of a recluse for avoiding the other people, but I just wanted to relax and spend some real time with S. We got on fantastically, even when I got a bit grumpy one night over absolutely nothing.
One night, S had a nightmare. When he woke up, he grabbed hold of me and crushed me into his chest, saying “it was horrible. I did something awful and lost you. It was horrible”.