Chloroform, hospital, a holiday in Wales and the not-so-secret diary

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”.

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25 Comments

  1. I don’t know your pain because i am not you and can never fully know it. But i know what its like for people not to believe you. Someone once told me “people are ass-holes”. I am beginning to wonder if she isn’t right and everyone is an asshole. But there are some people wo go against the grain, the rare ones. But so far even those tend to become assholes after a while. Maybe its me? But either way, you are not alone with people not listening or believeing you. I believe you…

  2. There’s nothing worse that feeling like you’re on an assembly line! I don’t know what it is with nurses, but some are so numb to others. They’re nurses! They’ve been trained to be caring. They got into the field because they wanted to “help others”. If those are so miserable in their jobs, then find a new one.

    And I’m sorry, but NHS has some issues. There are people that are pushing for it here in the states and the majority of us are not. Yeah, the “free” part sounds nice, but it’s not free. Nothing is free.

    I am SO sorry you went through all that! NO ONE should ever have to go through what you endured. I felt that frustration! That anxiety of just wanting someone to give a shit! You want to take someone and shake them and say “HEY I HAVE A PROBLEM HERE! I’M NOT MAKING IT UP!” So many people come into those places with ailments that are in their heads, that when a legit problem comes in, the staff has a tendency to be skeptical. So you in turn get the shove out the door treatment. I guess you have to be bleeding to death and have no heartbeat to get any attention.

    I believe in you! We all believe in you here! I believe you WILL GET THROUGH THIS! You’ve made tremendous strides already! You realize your problems and know you need to get some resolution! One day at a time (I know that’s not fast enough, we all like instant gratification!).

  3. I’ve been through this same type of thing for years. My pain had gotten so bad that I had started not wanting to live. I laid here alone with tears in my eyes, unable to eat or sleep with a migraine that lasted for 5 days. I know pain. I went back to the doc, he up’d the meds and told me this is my life. I need to learn to cope. Chronic pain ain’t going no where. I have to live like this and learn to manage. Let’s just say I ain’t taking that news so well. I want you to know that you are not the only one going through this. Lucky you have S. This has ruined my relationship completely. My illness ruined me as a person. I am tired of pain. I joke about whisky on my blog but it does stop my pain so I drink it. Better that than to suffer. I wish you the best and hope that you get better. I really do. Please keep us posted. -MOON-

    • We sound pretty similar at times, and in a way that’s a sort of comfort. At least I know there are people out there who understand what I’m experiencing and are kind enough to share those experiences so I know I’m not the only one. Chronic pain can be so isolating.

      I’ve been suicidal. If I told the doctors that, perhaps they’d take me seriously… but I don’t know if I could risk being seen as a danger to myself. Every time I’ve been truly honest with doctors regarding my mental state, I get locked up. I don’t want that, and I know it wouldn’t help. What would help is a diagnosis and for somebody to just say “yes, it hurts, I understand”. Somebody professonal. I’m sick of being looked down on because my illness isn’t ‘serious’ enough.

      I’ve destroyed friendships through pain and fatigue. I’ve ruined volunteer jobs and college courses. I lost my fiance because of it. I’m just so lucky that S is the first man I’ve met who takes it all in his stride. He’s had his fair share of tragedy in his own life, and doesn’t judge me. That makes a world of difference.

  4. I wish I knew what to say to bring you comfort. All I can say is that, from reading what you write here, I see a strong person, one who is incredibly resilient. Don’t let yourself forget that. I hope things get better for you soon.

  5. I feel your frustration with the way you are being treated and it made me want to scream right along with you. Thank goodness for a short time away with someone who cares for you…I care too and don’t want you to hurt yourself with outdated medicine that could have potentially sickening results…you sure don’t need to add to your pain! I’m so sorry…

  6. Most people aren’t bad. They simply suck. If there be one thing I know, then it is that life is pain. Soon you hurt less, soon you hurt more. But you always hurt. Pain is the price we pay for the continuous struggle to survive. And the stronger our feelings are in general, the stronger our pain will be. Sensitive people such as. Ou and I are prone to endure more pain – of whatever kind – because we are more aware of everything. For this reason, we are also more prone than most others to fall back into depression. Everyone can only take a certain amount of pain. If this threshold be crossed, we drift into nothingness. It used to come about without me being able to control it, yet over time I have somehow learnt to get myself into this state deliberately.
    According to my exprience, even if people believe you or try to understand, they can neither really comprehend nor help.

  7. My mum has been in pain for years now. Doctors can never seem to figure out what is wrong and keep sending her home with bullshit diagnoses and weak pain medications. When I would visit, I knew it would be a wait at the door before she would be able to convince herself to pull her tired, swollen, pain-riddled body from off the couch to answer. She eventually had to take a medical leave from work. The pain had become too much and on top of that now her thoughts were becoming increasingly muddled and cloudy. My mom has always been very forgetful (I think I’m bad, but I know she’s 100 times worse) and now its as if she can’t keep one train of thought from derailing completely. She could no longer concentrate at work. She’s hinted that she once forgot her name.

    She’s finally been diagnosed with Lupus.

    Even though its a completely crappy thing to have, she’s incredibly relieved and happy to finally have a name put to it. Now she can start DOING something about it. My best friend also has lupus so I’m going to give my mom her number and they can discuss any questions she has.

    But the whole diagnosis problem took years and years and years. She’s always, ever since I can remember, had really bad migraines, bad memory, pain, swelling…all common symptoms. She is now 53 and has JUST been diagnosed. A whole lifetime of suffering. And while there is no cure, it is manageable.

    The amount of doctors that have told her she is crazy her entire life are just countless.

    Don’t give up.

    • Why are chronic pain conditions so difficult to get answers for? I’ve never understood it, since there are so many diagnoses available and the tests are there; doctors just don’t seem willing to go that extra mile and actually diagnose. I suppose it’s not as serious as many other conditions such as cancer, but it does have a huge impact on your life. I’m so glad that your mother finally has a diagnosis, and I understand her relief. I only truly want a diagnosis so I know what’s causing all this – so I know I’m not faking or going crazy – and so I can perhaps start treatment. It’s all I want. I don’t want miracles.

      She sounds like an incredibly strong woman, and I take hope from her unwillingness to give up even when nobody’s listening.

  8. Haven’t come this way for a while and now reading your posts makes me very sad and concerned. But then I also know that if someone can write and express as lucidly as you can, then surely there must be a very strong core to that personality which will not give up however adverse the circumstances. I will never ever be able to fully comprehend the extent of your pain..I guess however empathetic we are we cannot get into another’s body and mind and feel that which the other is feeling. We can only assume with our intelligence and it’s not quite the same thing. But I can send you my love, unstintingly . Hope you stop hurting. Hugs.

  9. This made me want to cry, although I’m so glad you got to spend that time with S and be physically shown just how much you are loved and cared for. You seem to be such a strong woman and you need to SHOUT to get these idiots to stop dismissing you. Or at least go to a different doctor? It seems ridiculous that the nurse behaved in that way.

    I hope things turn around soon. You’ve got incredible strength, just keep riding through these waves.
    xxox

    • I’m not sure if you can ask to see somebody else in A&E, to be honest I was too tired and stressed to even think about it. I’ve had some horrible experiences with nurses; some have been wonderful, but occasionally you get somebody who seems to do anything but care. I can only assume they hate their job, which is a shame; nursing used to be a true vocation. Our local hospital has financial difficulties and a lot of workers know they’ll be out of a job in the next few years so I suppose apathy is taking over.

  10. I don’t want to alienate you by assuming you haven’t but have you ever underwent light therapy for Pompholyx? My Aunts hands use to be covered with it and she tried medications and shots yet none ever worked. She resorted to wearing gloves constantly to keep others from staring.

    But then she got a new doctor who suggested some sort of UV treatment? And now her hands are completely healed as if she never had it. I only ask because she never heard of it until she saw that specialist.

    I am sorry to hear you were treated poorly at the hospital. I know what that’s like. Emergency staff and medical workers can be very callous. :/

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