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These wounds are all self-imposed

I fell apart yesterday. In hindsight, it was coming; there’s only so long I can keep things secret before I blow, and I just couldn’t keep it in anymore. I cried all day. I don’t think I’ve ever cried so much.

I’m not coping. There, I said it. Why has it taken me six months to admit this? I know I’ve admitted that things are hard at the moment, but not how hard – I suppose there’s still the fear someone I know will read this. You know what? Fuck them. This is my outlet, not theirs.

Depression

My Medicated Cartoon Life

I’m horribly, hideously depressed. There aren’t words to describe just how lost I feel, and I’m so worried about admitting this because I don’t want to be seen as an attention seeker. Things have… escalated, very quickly. I’ve stopped eating properly – avoiding food all day then binging at night – and the urge to self-harm over the tiniest thing is incredibly strong.

Yesterday, I had an appointment with a doctor. I’d been vomiting for three days, unable to take any medication and struggling to cope with the combination of disability and needing to run to the bathroom every five minutes. The anxiety was beyond extreme, and I could hardly speak without bursting into terrified tears. As soon as I got to the surgery I started panicking and crying, begging my mum not to leave me (she insisted on coming to my appointment because I was so on edge), and once I saw the doctor I became an absolute wreck. I explained how I hate being on so much medication, how my life had become a pathetic cycle of pills, sleep, and insomnia. It went… okay, I suppose. I have another appointment in a week – I assume to check I haven’t topped myself – and I’ve been taken off the anti-inflammatories because my stomach’s utterly destroyed, and been given a much lower dose of the anti-depressant to stop me withdrawing. Duloxetine simply isn’t working for me, so we’re going to try putting me back on Cipralex next week in the hope it’ll stop the panic, or at least control it a little. It used to work wonderfully, and I was useless without it.

Dylan Moran

It took until 1am for me to finally break down in front of S. I haven’t really spoken to him about my mental health – it’s something I’ve always wanted to keep separate from our relationship – but last night was impossible. I simply couldn’t stop crying. I tried to go to bed early, but just lay sobbing in the dark. Eventually, I wrapped a blanket around myself, walked into the living room, and said, “is it okay if I be an emotional wreck in here with you? I’m not keen on doing it on my own”.

He was amazing. We sat on the sofa, his arm around me and my head on his chest, and I told him everything. Not about the tablet abuse, but I think he knows about that anyway. I told him I couldn’t see a future; not just between us, but no future at all. I was too scared to even try looking forwards because everything fucks up eventually. Truthfully, I’ve given up. There have been times recently where, if someone had offered me a quick and painless way out, I’d have taken it.

Somehow, its harder now that I want to make something of myself. In the past, I wasn’t bothered because I didn’t believe I would ever amount to anything, but now… I want a life. I want to go out and see people and speak to other humans. I want to be able to use public transport without having to put mental blinkers on so I don’t panic. I want to be able to eat normally, and sleep properly. I just want to be something close to normal, whatever that is. I want to feel okay.

.

 

 
9 Comments

Posted by on April 6, 2013 in Every day life

 

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Last stop: this town

“You know, we’ve spent every day together for a month now. Are you bored of me yet?” 

It was said in jest – I still refuse to be clingy with S – but, as always, there was a nugget of truth in my words; a small fear I covered up with a nervous giggle. Since S and I first discussed the possibility of moving in together over a year ago, I’ve worried that spending so much time in each others pockets will cause some sort of breakdown between us – we’re both so used to our own space – but so far it seems to be working. I don’t want to question why it’s going so well, in case I somehow jinx it, and going well it is. I’m still in some sort of weird denial; I keep expecting to wake up tomorrow in the little white bed in my old bedroom, with the sheets covered in loose tobacco and ash, my head fuzzy from co-codamol overdoses. All that feels so far away now, yet too close for comfort. Life doesn’t work this way for me, it never has. It’s never been so good. I don’t think I can be blamed for worrying, can I?

We’re still living in chaos, but it’s a strange, enjoyable sort of chaos. The large hallway of the flat is filled with boxes, as is the living room and temporary bedroom, and the kitchen and bathroom still have no floor coverings. It’s a bit of an awkward situation; we’re renting the flat from a friend’s mother, who lost her father a few months ago. Her mother is in a nursing home with dementia and arthritis. I don’t think she was quite ready for us to move in, or maybe she forgot when we were supposed to be taking over the flat, but the bedroom is still filled with their belongings – paintings, books, old clothes – which is starting to cause a problem. Perhaps I’m overreacting as usual, but it’s frustrating that we can’t move in ‘properly’. I want to unpack, I want to see our belongings together so it all feels real. I want to sleep in the bedroom with the big bay window and built-in wardrobes, instead of a small room which the bed can just about fit in. I want to be able to make this our home. We’ve been here a month, and the bills haven’t even been sorted out yet.

I’m probably the only person in the world who wants to pay bills.

On the whole though, it’s wonderful. I always imagined I’d end up on my own in a cheap bedsit, living off cigarettes and peanut butter from the jar. If I’d stayed in school long enough to have a yearbook – if we even had yearbooks in the UK – under my picture it would have said “most likely to end up alone, eaten by cockroaches”. Honestly, I never believed that life would throw me the lifeline it has. That it would change so dramatically.

On the subject of change, everything has been shaken up on the medical side of things. I saw my GP on the 9th, determined to finally make my point about the way I’ve been treated; or not treated, rather. Moving out has given me the motivation to stand up for myself, if only because I don’t want to burden S with all my problems. Now we live together – I can’t stop repeating that we live together, it’s still so unreal – I can no longer hide all those freak-outs and breakdowns from him, and the last thing I want to do is make him feel like my carer rather than my boyfriend. Living with J taught me just how difficult it is to be constantly bombarded by mental illness, and S doesn’t need my craziness hanging over him. Neither do I.

So I sat, and explained to my GP just how difficult things have been.

This is probably going to take longer than usual“; and take longer it did. He listened though, and made all the right noises; nodding when I explained how let down I feel by the treatment I’ve received from the specialists I’ve seen recently.

Physio has been worse than useless, referring me to the Biomechanics Clinic, then when the appointment finally came ’round after being cancelled once and pushed months ahead, they referred me back to physio. Told me to keep doing the exercises on my foot, regardless of how painful it is. Told me there was nothing really wrong except for a bit of tendonitis. I can’t walk. I can’t sleep. It’s the worst pain I’ve ever felt, and I’ve had gallstones. I don’t think I can take the constant backwards and forwarding anymore. I can’t take the tiredness, the lying awake at night wanting to cut my foot off. I’m sick of it all”.

He looked at me. Put his head to the side, and leaned forwards.

Has the anxiety and depression become worse?

So it all came flooding out. How I simply can’t cope anymore; with the pain, with the panic attacks, with the hospital visits and disappointment. I can’t pretend that things have been rosy over the past few months; the combination of medical let-downs and moving house has sent me somewhat over the edge. Not enough to truly worry anybody; just enough for me to know that things aren’t working properly. My brain… it had become tired. Cynical. I think I’d given up in many ways.

And I didn’t want that, not when I have this chance to assert my independence and live the way I’ve always needed to. For the first time since I can remember, I have a little potential. Not much, just enough to reassure myself that I do have a place in the world.

And the fibromyalgia? Joint pain? We need to deal with that too. I’m going to put you on Cymbalta; it’s an antidepressant and works for anxiety much like Cipralex did, but it’s also licensed for nerve pain. Cipralex just doesn’t seem to be working for you anymore. You need to stop taking it, wait two days, then start the Cymbalta. That way there shouldn’t be too much of a gap where you’re without some form of medication for the depression and panic attacks. I’m also giving you Arcoxia, which should be more effective than Celebrex at controlling the pain. Finally, I know you’re tired of referrals but I think you should see orthopedics. I’d have referred you sooner but with your history I thought rheumatology would be more suitable. We’ll do some blood tests, to check for RA again, and see where we go from there. See me again in a month, and we’ll look at how you’re doing on the new tablets.”

I left the surgery with a prescription, an appointment with orthopedics for the end of the month, and a small sense of hope. Of course, it’s not the first time I’ve felt that hope and been let down, so I refuse to get too excited by the possibility of finally seeing some improvement.

I’ve been taking the new meds for six days now. Yesterday I began to feel the real effects of Cymbalta; fuzzy head, dry mouth, misplaced energy, and bizarre dreams. However, I haven’t panicked, and the dark mood has lifted a little. Taking a new antidepressant after years of Cipralex working perfectly is a little scary – I’ve relied on it for so long – but so far everything seems okay. Nausea, but no vomiting. Stomach pains, but not unbearable. Most importantly, the pain has decreased dramatically, to the point where I can now walk without a stick. I’m still stiff, and I still stumble, but I can walk to the shops; a massive improvement.

Living with S is everything I had hoped for, and more. We cook together. He brings me cups of coffee and rolls cigarettes for me when I’m tired. We have a huge leather sofa with a chaise longue. A low Ikea double bed with new sheets and a king-size duvet. A communal garden – currently waterlogged – and neighbours who say hello when I bump into them. We live in a village now; still in the same town, but nicer somehow. Slower. Less stressful. There’s a grocers. A butcher and a fish shop. Spar. A hairdressers and a shop which sells frozen yoghurt with fruit in.

I know we won’t be here forever. Renting is probably our only option for the rest of our lives – we simply can’t afford a house and probably never will – but for the time being, I’m in my own little paradise. A place I can be myself, without pressure to perform and be ‘normal’. Somewhere I can exist without feeling I should always be doing more to be like everyone else. Most importantly, perhaps, is the fact that I’m getting on well with my mother. We speak regularly on the phone, and I visit at least once a week. She now agrees that we needed to be apart. That I needed my freedom.

I have freedom.

You don’t know how amazing that feels.

 
47 Comments

Posted by on October 17, 2012 in Every day life

 

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Rude Awakening

Another day, another suggestion that I see my GP.

“I think you’re taking the wrong medication, the Daily Mail says Lyrica is used for anxiety but you’re on beta-blockers and Cipralex so you don’t need it all”. 

I curse the bloody Daily Mail.

Yet again, I slept badly last night. I’d napped during the day – an unsatisfying, food-avoiding fibro nap – and ended up awake until dawn. Dozed off sometime in the morning and was woken by my mother insisting I get out of bed and make an effort. Shouting about medication and having to see my doctor. I’m sick of hearing this at least once a week. Of course, I reacted; half-asleep and irritated, I burst into tears. I just wanted some peace. I wanted to wake up naturally on my own, rather than having my sleep cycle decided for me.

I used to try to avoid getting angry, but I’m tired of it now. Yes, I sleep at odd times but I’m not the only one, and is it any surprise?

Moving out can’t come too soon, but even that comes with its own hurdles. For weeks now, my mother has been trying to get me to pack my stuff away. Telling me to measure furniture and asking about curtains and toasters. Although I’m determined not to let her take over this move, I know she’s trying her best to involve herself with every aspect of it and I really don’t want her to. This is my final attempt at freedom; the first time I’ve actually moved out with a purpose. It’s mine and S’s flat, not hers… and I’m not sure how much I can humour her without blowing up in her face.

Don’t get me wrong. I know she’s trying to help. After all, she’s worried about me. Of course she is. I’m moving into a flat where I’ll have to take control of my own prescriptions and moods; but she seems to forget that S will be there too. And with the freedom living away from my mother affords, I know I’ll be happier. I know I’ll be able to move on somewhat, and hopefully work towards maybe getting to the point where I can work from home in the future and get off benefits. Living here… she’d never allow that. She’s too protective.

I’m not saying I’ll magically get better once I move away. I know there’s a lot of hard work to be done; specialists to see, tests to have, and a lot of the past needs to be dealt with before I can even begin to push on in life. I may never improve physically. I may get worse. But there’s a tiny, tiny chance that being allowed my own freedom and personality could relieve some of the stress on my shoulders and, in time, allow me to think of the future.

Yet again, I’ve wasted an entire day. After being so rudely woken I simmered in my own frustrations for hours, only venturing downstairs once to make a coffee. I avoided my mother. Didn’t offer to make a cup of tea for her. Usually I relent and accept things are never going to change, but why should I? I’m so close to that freedom – close enough to almost touch it – and here she is, still insisting I see my doctor every time I sleep in. Still combing the Daily Mail for health articles to thrust in my face as I’m trying to wake up. Still telling me to measure the walls of the new flat and fit furniture in accordingly.

Is it really the end of the world if I don’t put my desk where she wants it?

I’m tired, but doubt sleep will come easily tonight. I simply can’t cope with being woken suddenly. It throws my whole day off. I’m trying not to feel anxious, but having that bloody one-sided conversation about my fucking GP at least once a week is driving me up the wall. I’ve made no secret that I’m struggling right now; to add to the anxiety and panic attacks, I’m falling down the ED rabbit hole again. It’s so easy to do. It’s control, you see. If I control what I eat, things can’t get on top of me. Knowing I’ve hardly eaten for days is a comfort; I may not be able to deal with the stresses of every day life without freaking out, but I can restrict calories like a champion.

 
12 Comments

Posted by on August 14, 2012 in Every day life

 

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Paranoia

Eventually, I slept. Uncomfortable, sweaty sleep; the kind where every nice dream has a hidden monster and you wake every so often, afraid of the dreams but fearful of staying awake. Sleep which does nothing to ease the fatigue, and probably contributes to it.

Yesterday I told my mother that I didn’t want to look at the newly-refurbished market, or go in Superdrug, or buy anything from Boots. Avoided TK Maxx and insisted we have coffee outdoors, all because I couldn’t stand the feeling of being watched by everyone. Paranoia is raging through my head at the moment, and there seems to be little I can do to stop it apart from avoiding public places

When I lived with J, I became agorophobic. Not of open spaces… just of people. Eye-contact became a nightmare of “what are they looking at? Is it the piercings? Do I have mascara down my face? Is it because I’m ugly?”. I did try to go outside for a while – forcing myself to speak to shop assistants even though I was sweating and shaking – but it just didn’t work. The space outside of the front door became the enemy, and I locked myself away rather than face the stares and the comments I never heard, but knew people were saying cruel things as I walked past.

 

It’s easy to hide, you see. Since I moved back in with my mother, my bedroom has become a fortress; a sort of physical representation of the wall I’ve been building around myself since childhood. When life becomes too much to deal with, I can retreat to the safe space, knowing nothing can truly hurt me when I have my belongings around me and familiar things I can touch. It grounds me. Knowing where things are going to be and having everything just as I want it… it’s a security blanket.

I’m starting to give in to the paranoia again. It’s always been there – there’s never been a time where I don’t believe strangers are staring at me and weighing me up – but recently… it’s blossomed. A rise in anxiety was always the risk with taking Lyrica, and so far I’ve been weathering the growing storm as best I can, but it all feels like it’s becoming too much now; I don’t have time for it. I don’t want it.

Which is why, when S and I are settled into the new flat, I’m going to ask my GP about speaking to a psychologist. This is a big thing for me – I’ve had such negative experiences with the mental health system that I lied to the last specialist I saw and told him everything was fine, just so I didn’t have to go through with all the shite – and to be honest, I’m scared. I coped on my own for so long, and I thought I was doing well… but I’m still having delusions. Still hearing the voices.

I need someone else’s take on it.

 
38 Comments

Posted by on August 9, 2012 in Every day life

 

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Fingers crossed

Sometimes fate seems to conspire to shuffle everything into exactly the right position. Sometimes, you get given a break from nowhere, and although looking upon it as some sort of divine intervention is undoubtedly ridiculous and against everything I believe in… occasionally I wonder if somebody may be looking out for me.

I never wonder enough to believe it. I’m a woman of science; in mind if not education. Sometimes the concept just flickers through my mind. Like it did today.

I didn’t sleep. Of course I didn’t; it never happens before an appointment, and I admit I to missing S terribly after spending five days attached at the hip, so – as always – I comforted myself with procrastination until morning. Dragged myself off the bed at 8am to tie my hair back, put some mascara on and shuffle myself into my massively-oversized fat jeans, and then sat around snapping at my mother for a while. As usual, she gave me the usual verbal list she trots out every time I leave the house:

Have you got your phone?

Have you taken your medication?

Have you got your stick?

Do you have a cardigan?

Will those shoes be comfortable?

… sometimes, the list can run on into the hundreds, I swear.

To my shame, I called a taxi to get me to the small medical centre. It’s only a five-minute walk from my house. I just couldn’t face hobbling down the street in full view of the neighbours. I’m already the local weirdo, and small-town memories are long; my neighbours have seen me being brought home by police cars and taken to hospital in ambulances. They’ve watched me storm down the road while screaming at my mother, swearing and threatening suicide. To them I must come across as very strange; often not leaving the house for days on end and never using public transport. I’ve never driven a car (legally anyway) or left every morning for a regular job. It’s rare that somebody visits our house, and my bedroom window – which overlooks more houses – often has the curtains open wide and a light on at 3am.

I digress. When I got to the medical centre, I walked to the desk and told the receptionist I had an appointment with Dr C at half nine. She looked at her computer screen and winced; “it’s actually booked in with Dr W“.

Dr W is my sworn mortal enemy. As a young child, I was allergic to streptomycin – an antibiotic which is now only given intravenously in most countries, but was free for oral use when I was younger – and this was clearly documented in my notes. Dr W was called out for a home visit after I’d picked up yet another infection somewhere in my body, and straight away prescribed streptomycin. I assume my mother was too tired and stressed to check what she was giving me. Long story short, I went into anaphylactic shock and became very ill, and my mother and I (almost-jokingly) refer to her as the woman who tried to kill me.

Okay, doctors mess up. However, Dr W has been my sister’s GP for a long time, and in the past would often leave E in tears as she accused her of smoking. E is severely asthmatic and requires strong inhalers, and I’d take a guess that she really, really doesn’t smoke. Neither of my sisters do, although my brother C smokes like a chimney

As a result, I’ve always been  nervous of Dr W. I don’t cope well with authority as it is, and any hint of feeling judged or being seen as faking it sends me into a mad panic. However, I was in such a bad mood that I just accepted my fate and decided to throw her desk across the room if she so much as looked at me sideways. As it turns out, I didn’t need to force my pathetic muscles to throw office furniture. I didn’t even need to protest anything. This is where the fake divine intervention comes in. I saw her on the day I was finally going to lose it, when I finally reached the end of that absurdly long tether. The one day I wasn’t meek and mild, and was prepared to threaten to sue over the ridiculous length of time I’ve been expected to deal with multiple health problems with no real treatment or investigation.

I sat down and we exchanged “long time no see” pleasantries. I bit my tongue against saying “long time no attempted child murder”, and explained what’s been happening.

“I’m just tired of the pain. I’m sick of missing out on life because everything revolves around appointments. Lyrica helps, but I can’t enjoy my new-found ability to walk more than a few yards because I can’t stand on my left foot without wanting to amputate it. I never heard back about any test results, I don’t know what’s happening, everything seems to be inconclusive, and I want to know what’s going on.”

Dr W got on the phone to radiology and tried to chase up my ultrasound results, with little luck. Then she called my rheumetologist’s secretary. Again, no luck; Dr B has the results but Dr W couldn’t access them. After examining my foot she confirmed that I had indeed waited too long for any follow up, and promised to speak to Dr B himself later in the day to arrange an appointment with him ASAP.

I left her office feeling hopeful. Dismayed that I still have no way of alleviating the pain, but cheered to know she listened to my worries and not only took them on board, but acted on them. The doctor who tried to kill me… she came through for me.

By 11am, she’d spoken to Dr B. He’s sending an appointment out.

Fingers crossed.

 
27 Comments

Posted by on July 12, 2012 in Every day life

 

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I hope you’re feeling happy now, I see you feel no pain at all.

We drank vodka and orange juice, beer, cider and rum and coke. Played Boggle online, keeping a tally of scores. Sat in the garden – both rain and shine – and smoked while getting sunburned one day and sheltering from the torrent by squeezing into the spider-infested shed the next. Ate pizza, kebabs, garlic mushrooms, toast, a roast dinner, chocolate mousse, biscuits and pack upon pack of Wotsits. We sat by the lake and stuffed our faces with chips, watching a swan paddling away near a stack of beer barrels and an old paddle-boat which is long past its prime but still takes tourists out on the lake in the summer; rust and all.

We lay in bed for hours. Napped when we felt like it, and stayed up late. Ventured out to buy large mochas and sat for hours, watching the world go by. Bought blackcurrant beer and German ale, and laughed at the weird and wonderful passing our little spot in the street. Had mind-blowing, sweaty sex, over and over. Watched Trailer Park Boys on YouTube and ordered takeaways so we wouldn’t have to go shopping. Played 8-ball with a couple of friends and smoked a not-so-sneaky joint outside the pub. Got drunk and stoned and laughed at nothing, for days on end.

Now, it’s Wednesday morning – almost 5am – and I’m sitting on my bed, wide-awake, cannabis smoke floating in the air and through the detritus which covers my bedroom. I don’t know what happened; a miniature hurricane, I can only assume. Pill packets and incense sticks are cluttering up my desk, along with bottles of nail varnish remover, jewellery holders, and empty tobacco packets. The coffee I made is strong and bitter, with grounds still floating on top, and my mouth is dry from all the smoke. I haven’t slept, and I have a doctor’s appointment at 9:30.

After such an amazing, hedonistic weekend… I should be happy. I am, really. I’m just… eh. Angry, I suppose.

I’ve occasionally mentioned having tendonitis. Acute Achilles tendonitis, to be exact. I’ve had it for over a year. There was no real obvious cause; the sole of my foot started aching every time I moved and, in a worryingly short space of time, I lost the ability to flex my foot up or down. I stuck it out for months, deciding it was yet another frustrating part of fibromyalgia, until the pain became so unbearable – like knives being driven into the back of my ankle – and I woke up one morning unable to hold any weight on my left foot. It was just dead; tingling and unresponsive with sharp ribbons of pain snaking over the whole of my lower leg. Naturally, I was a bit concerned and, considering I couldn’t walk and felt a weird combination of numbness and excruciating pain – along with balloon-like swelling of my foot and ankle – I went to A&E.

Long story short, I was given some painkillers and told to go home and rest. I wasn’t even seen by a doctor. I cried, but it got me nowhere. After going to my GP to complain that nothing was done to help the obvious damage, I was referred to a podiatrist/physiotherapist. He manipulated my foot, gave me insoles to force the tendon into place, and covered my ankle in ice until it burned. Whatever he did, the swelling refused to go down and so he referred me onto the biomechanics clinic to see a rheumatologist who specialises in movement.

Of course, they wrote to me and informed me that my appointment was to be moved to September.

That’s not why I’m angry. I’m angry because, after over a year, I’m still in pain. It’s yet another ridiculous sensation to deal with, and I’m sick of being pushed from pillar to post when nothing really seems to achieve anything. I’ve had an ultrasound scan, but still – over a month later – don’t know the results.

For the past four days, I’ve been unable to walk without standing on tip-toe on my left foot, because the tendon is so damn tight I can’t move it without pain. Tooth-gritting, wincing, tears-in-the-eyes pain. S has been his usual amazing self – fetching cups of coffee for me and helping me get over the back door step – but now that I’ve come back to my mother’s after an extended weekend (from Thursday to last night; S took some time off work) I’m quickly sinking into the old frustrations and regrets about not pushing harder for treatment. I’m such a mouse sometimes. I don’t want to tell anybody what to do.

That has to change today. Originally, I was seeing my doctor for a swollen finger; hardly the medical drama of the century, but a very painful inconvenience, and I figured I could get the whole blood pressure/side-effects/general emotional well-being stuff out of the way for another month or so. However, the red skin and suspicious ridged nail will have to take a backseat, because I’m determined to get something done about this damn foot today.

If I have to cry, I think I will. I rarely cry in front of doctors – I already feel inferior to them – but quite honestly… I just want this pain to stop. I have enough to deal with already, and I just need some respite. Some time to enjoy the effects of Lyrica – which doesn’t work on tendon pain or swelling – and try to start living my life again. Instead, this fucking tendon has taken over my life.

Over the weekend, the photograph of myself I posted has been weighing on my mind. Did I do the right thing? Am I utterly off my head to think that putting a photograph on such a personal blog is a good idea? More than once, I’ve thought about removing it; just deleting the post and forgetting it ever happened. However, doing that would also mean I’d lose all the comments which, although hard to read without wanting to run away, really made me feel secure, and my cold old heart was pretty damn warmed by knowing there are people reading this who don’t think I’m disgusting.

Also… nothing is ever lost on the internet. It’s there forever now.

So I just need to suck it up and accept that my anonymity was ruined a while ago, and it’s not like I’m a celebrity. The chance of somebody I know finding this blog on their own is still lower than low, and if they did find it… well, maybe they shouldn’t be so nosy. Perhaps they’d learn something.

I should really write a list for my GP. Each time I see him, I forget something vital. I only refuse to do it because my mother insists I write a bullet-point list – typed and printed – for every appointment; a bit of teenage rebellion which I never quite grew out of. This time… I haven’t slept. I haven’t drunk nearly enough coffee, and the weed is stronger than usual. Great for pain; not so great for thinking clearly.

If I throw myself on the floor and have a tantrum, do you think it’d achieve anything? I feel like it’s about time to direct my anger elsewhere than at myself.

 

 
53 Comments

Posted by on July 11, 2012 in Every day life

 

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“…or does the mind control the body? I don’t know.”

Yesterday I woke up expecting to finally be over the ‘flu after a week of hacking, choking, snotting, complaining and feeling like my head is going to explode. I expected that even I – she of little immune system after taking steroids – would have shaken it off by now.

No. Of course I haven’t; that would be expecting too much. To add insult to injury, I developed a huge cold-sore on my lip, going down my chin and blistering like crazy. This morning (well, afternoon) I woke up, coughed for a while, realised I had no energy and sunk back into bed. A quick glance in the bathroom mirror confirmed that the cold-sore from hell has grown even more. I look like a mutant.

I’m frustrated. Today, a group of friends have gone to the beach to celebrate the solstice. We do it every year; party until the sun rises the next day. I missed the last party due to illness, and I’m missing this one too. It just doesn’t seem fair.

I sometimes wonder if I make things worse for myself; that perhaps I’m so used to feeling sick that I expect it, and maybe I pretend things are worse than they are. I’ve always wondered that. A lifetime of illness isn’t normal, after all. I was sick when I was born and, twenty-seven years later, I’m still sick. I’ve had ear infections. Urine infections. Infections in my cervix. Almost daily diarrhea since I was a child. I went into anaphylactic shock as a baby. My ovaries are covered in cysts and my cervix is full of scar tissue. They removed it, but it comes back. They give me antibiotics for pelvic inflammatory disease but they don’t work. My gallbladder got infected, and my bile duct was blocked; which caused pancreatitis. It took months to recover from having it removed, and again, I was left with scar tissue and a life-long need for strong anti-acids to cope with stomach acid going the wrong way because my bile duct was damaged.

I have a rare type of eczema on my hands and feet; one which can’t be treated by even the strongest steroid creams. I’ve always been prone to eczema breakouts, but this is something else; this breakout has lasted over a year. I’ve been given every cream available, and was turned down for expensive treatment so I’m left with no choice but to live with it. It burns; I need regular antibiotics to combat the infection which constantly breaks out in the cracks, and my skin is scarred from how deep the eczema goes. Most people with this type have it for life, with occasional remission.

At the present time, I am under the care of one of the top rheumatologists in the UK, along with the dermatology department, the bio-mechanics clinic and my own GP. I’m waiting to be referred to urology, and possibly back to gynecology. Sex has become incredibly painful and, afterwards, it burns for hours. The slightest pressure is causing my skin to tear, even on the outside.

Logic says I can’t be inventing any of this because my medical records are stuffed with consultant’s notes, diagnoses, test results, second opinions and operations. Each and every problem has been documented and proven to be real. Yet I still question myself.

 
37 Comments

Posted by on June 20, 2012 in Every day life

 

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Another appointment

My GP’s waiting room is a collection of blue chairs, scattered around tables with old Mojo and Country Life magazines, and the walls are covered in posters for diabetes drop-in clinics and stopping smoking advice. I assume most GP surgeries are the same, give or take the annoying radio which plays Smooth FM at deafening volume. I’ve sat on those chairs so many times in the last few years that I know every last stain and blob of walked-in chewing gum on the carpet. I know when the baby drop-in centre runs and how many patients didn’t show for appointments each month. In a way, it’s like a second home.

Today’s appointment was at 9am. I’m getting good at leaving the house on time now; usually I wind myself up into a state of total panic and end up rushing down the road, sweating and coughing like only a chain-smoker can. Although I didn’t sleep well last night – which concluded in a binge – I managed to be ten minutes early. It was only a routine appointment – medicine checks, craziness checks – but I still somehow convinced myself that I’m a “frequent flyer”; somebody who spends their lives hassling GP’s. I feel guilty for the amount of use I’ve had out of the NHS, and although my doctor has reassured me in the past that I’m not wasting anybody’s time, I’m still not convinced.

We chatted about the side-effects I’ve had from Lyrica – dizziness, nausea, stomach upsets – and also discussed the panic attacks I’ve had over the past couple of weeks. I asked if it could be caused by Lyrica, rather than my anxiety getting worse, and he said that although it’s not a common side-effect, it can happen and my history of severe anxiety makes me more likely to react in that way than the usual 1 in 1000. I feel a bit happier knowing it could simply be down to medication; I can cope with that.

He asked how I’ve been doing on Lyrica otherwise, and I told him the truth; that I’ve slept properly for the first time in years, I can walk without a stick most days, and that I’m in much less pain. I have considered that perhaps all this is placebo effect, but even if it is… I feel better than I have done in a long time, and I can see a future again. With that in mind, my GP has upped the dose from 150mg a day to 300, and once I’m settled on the right amount he’ll keep me on it long-term. Great news, and again… hope for the future. It feels amazing to know I’m still being taken seriously by medicine, if not society.

 
27 Comments

Posted by on June 8, 2012 in Every day life

 

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… and I’m feeling good.

I think the Lyrica has stabilised after the settling-down period. I’ve been taking it for two weeks now, and this morning I experienced a little pain; not enough to concern me, but it was noticeable. I’m seeing my GP in a couple of weeks, so I think I’ll have to ask for a higher dose – I’m taking 75mg twice a day, and he said there was a lot of room for raising the dose if I needed it – just to make sure I’m getting the best pain relief I can from it.

Lyrica has already been a blessing. Even on a low dose, the pain has reduced dramatically. My arms don’t ache anymore – and I can lift them above my head for the first time in years – and my thighs no longer feel like somebody’s stabbing them with a blunt spoon when I wake up. The anti-inflammatories are helping with the joint pain more than I expected; my fingers still hurt, but my wrists and ankles don’t feel weak and painful anymore.

Today’s a rest day. The sun’s shining outside, but I’m sitting on my bed, half-typing and half-watching television. The window’s wide open next to me, so I can enjoy the warmth and sunshine without having to sit on the uncomfortable bench in the garden. Yesterday, I sorted clothes to give to charity and helped around the house, clearing my extensive toiletries collection from the overcrowded bathroom and sorting things online for my mother. It’s the first time I’ve slept well on a Sunday night since I can remember – I always feel uncomfortable and alone when I come home from staying with S – and I got up early; around 8am. This morning, I got up even earlier, making a coffee at 7am and settling down to reply to emails. I slept for 11 straight hours last night, and woke up feeling properly awake and ready for the day; no nightmares, no going back to sleep, and no waking that I can remember.

It’s years since I’ve slept properly. It feels like a miracle.

Perhaps it’s all the weed I’ve been smoking recently, but I feel pretty blessed right now. Not in a religious way – I’m not about to suddenly find god – but just in the sense that I have plenty to feel good about right now. For over a decade my life has been a struggle – panic attacks, paranoia, failed relationships, lost friendships, life in the mental health system, unexplained diagnoses – and at this moment in time a lot of stuff is under control, or I’m at least trying. I never used to try; I just accepted my fate. Now… perhaps things can change.

I have S, who is the best boyfriend I’ve ever had by miles. I love him dearly, without jealousy or resentment. I trust him not to hurt me;  I’ve never trusted anybody else like that. He makes me happier than I ever thought I could feel, just by smiling at me. I’m far from a novice when it comes to relationships; I’ve been engaged, lived with partners, loved, hated and cried. I’ve had long-term relationships and short disasters. I was with the same person for four years. I know how love feels, and how relationships work… and I love S with all my heart. He’s amazing.

I have pain-relief. Finally, I have something which works. I’m no longer bed-bound for most of the week, and I’m starting to feel I could start achieving something again, after giving up entirely on any idea of a decent future.

Last year, I got my diagnosis of borderline personality disorder, after years of ruining relationships and acting in ways I didn’t understand or much like. In truth, I hated myself for lashing out and being so suspicious of everybody; I felt like an awful, obsessive person, one of those women who refuses to ever let a relationship go and boils bunnies in her spare time. Now I know why I react in that way, and I can work on fixing it. I’m already improving.

Finally, I’m really enjoying writing. Loving it. I feel like me again.
.

.

 
48 Comments

Posted by on May 22, 2012 in Every day life

 

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When the first cup of coffee tastes like washing up she knows she’s losing it

At 6am this morning, I sat by my bedroom window, smoking a joint and listening to the geese calling on the marshland while the sun peeked through the black clouds in the sky, and I considered yesterday’s appointment with Mr B.

All Monday night, I was smoking furiously. Drinking cup after cup of strong coffee. Anything to stop myself tipping over a precarious emotional edge. Got out of bed and tidied. Went downstairs and ate half a sultana and cherry cake. Sat and stared at the muted TV screen, watching the PS3 graphics float around. By 7am the room was filled with a haze of smoke and incense, and the floor was littered with empty mugs and Rizlas. Sleep would have been impossible, so I didn’t even try.

I tied my hair up and clipped my fringe back, put on a small amount of makeup and got dressed. I almost didn’t bother making any effort at all – I felt so out of sorts – but S wanted to meet me outside the hospital before the appointment and I’ve been absent enough recently without also looking like a total horror. As usual, my mother insisted on coming with me; she has to get involved in these things. She also has an obsession with being early for every appointment and meeting, whereas I prefer to leave it to the last minute so I have time to gather my thoughts, so my anxiety levels were peaking nicely by the time we got to the hospital. S brought his coffee outside and we chatted a little about the appointment, and when he left to go back to the lab he gave me a big hug and a kiss and told me it’d all be fine.

Our hospital is like a rabbit warren, but years of medical emergencies and referrals mean I know the place like the back of my hand. However, my mother always gets convinced she’ll get lost and panics, setting me off. By the time I reached the rhematology waiting room I was a simmering mass of fear and anger, glaring at the other patients and snapping every time she tried to speak to me. An old man a few rows across from us was reading a paperback and looking around him, and I found his movements unbearable. Just as something was going to snap and I flew at him for daring to breathe, Dr B came out of his office and called me in. We chatted about the fibromyalgia diagnosis for a while; whether I still experience any symptoms and how much the pain affects me. He opened my medical records and read for a while, commenting that I spent a lot of time in the hospital. I’d been admitted eight times or so when my gallbladder got infected, and before that I’d seen gynaecologists, ear specialists, doctors for IBS, had tests for Cushing’s and hormone malfunctions, and had cameras shoved into places I don’t want to think about. My life has revolved around hospitals and clinics and, sitting in Dr B’s office, I couldn’t help wondering if this was just yet another specialist with no answers.

However, answers were provided for once. Dr B moved my limbs around, pulling and pushing on my arms and legs and poking me my shoulders and back. He made me lie down and tried to bend my legs towards my chest. Put his hand on my knee and gently bent the joint. The pain was unbearable, but I gritted my teeth and got on with it, determined to take the advice to not hide the discomfort.

I sat back down, and Dr B explained what he’d found. I have osteoarthritis in my knees, hips, hands, wrists and possibly feet and neck/spine. The pain I’ve been experiencing is from the joints degenerating, especially in my knees. The fibromyalgia diagnosis isn’t in question; I still have it, and I’ve had blood taken to test for RA. I need an ultrasound on my left foot, possibly cortisone injections, and he’s hoping to start me on Lyrica if my GP’s surgery agrees to providing such an expensive drug. I have to see my GP in a couple of weeks to discuss any findings from the blood tests and work on a plan to manage the arthritis.

It may seem strange that I thanked Dr B for the news. Even stranger that I actually smiled. I just didn’t know how to react; I nodded and listened to his advice, but all I could hear was “there’s a physical reason why you’re in pain”. I have something which can be seen on a scan, felt under a hand… I have something nobody can deny, and that’s a feeling like no other after years of misty diagnoses and judgement.

 
33 Comments

Posted by on April 11, 2012 in Every day life

 

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