Not that I need proof.

3.30am. We were outside. Me sitting on a slightly damp mesh chair, S standing; smoking and drinking white wine.

S kissed me on the forehead.

Me: “If I had a problem, and felt weird talking to you about that problem, would that be silly?“.

 

So I told him. Confessed I’d lied last weekend about feeling ill, and in fact I was trying my best not to eat. Explained how it’s all about control and, haltingly, listed the reasons why I’m grabbing onto a past ED to cope.

He didn’t ask why.

He didn’t tell me to stop.

And he didn’t get angry.

He just kissed the top of my head and rubbed my shoulder.

“How are we going to fix this?”

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.

 

But the story is over.

Worry of any sort inevitably leaves me with the total inability to sleep, unless I take codeine. Since I’m trying not to rely on it, stress means sleepless nights now, and last night was no different to the usual rigmarole. I sat up in bed all night, watching films and trying to read; all while wondering if today would bring hideous, horrible, devastating news.

By 9am, I was fast asleep, finally worn down by the hours of staring at two different screens and leaning against pillows too soft for my neck to feel supported. I did try to stay awake, but by the time I crawled under the topsheet I’d decided that I wasn’t going to miss out on vital sleep just because somebody’s decided to make my life difficult.

And made my life difficult, they have.

The fraud officer was quite nice; but I’m a cynical cow at heart and I wasn’t sure if she was just trying to get me to confess to some terrible crime. You see, someone had reported me. Not only that, but they reported me for the most ridiculous reason; they contacted the benefits office and told them I had a job.

As you can imagine, this is pointless stress I really don’t need.

Quite why somebody would make up something so ridiculous is beyond me. Out of every option they had to ruin my life, they chose the one thing I could prove without a doubt; that I am unemployed and, apart from a few short stints attempting voluntary work, have never had a job. Not a single one. Nowt. Zilch. How stupid are they?

To prove my innocence, I have to supply the DWP with bank statements. For the past god knows how many years. It’s a nightmare; my mother is stressed out beyond belief with the thought of having to deal with it all (since my benefits go into her bank) and she’s spent the entire day ripping the house apart and freaking out. I doubt she’ll sleep tonight. See, this is why it’s all so cruel; fair enough to have a problem with me, but don’t take it out on my mother, for the love of God. She’s ill. She can’t take it. She’s a bloody pensioner; she doesn’t deserve to be caught in the middle of my battles.

I just wish I know what those battles were, because as far as I can tell I’ve never given any reason for someone to suspect I’m working whilst claiming benefits. It has to be vindictive, and that hurts. I’ve been outspoken in the past, but never cruel. If I ever have truly hurt someone, it was always when I was scared, and they knew that. As horrible as some of my exes are, I don’t suspect any of them – it’s just not their style, and they’re the only people I’ve hurt that I’m aware of.

Z messaged me on Facebook after the appointment was over – with a promise to provide bank statements – and asked if I wanted to go to the market to buy some body jewellery. I was tired and somewhat frazzled by the news someone hates me enough to piss on my parade, and usually in that situation I’d cry off, faking some sort of illness, and distract myself with computer games and food. Today though, I decided fuck it; I’ve given up too much of my life because other people have tried to push me back.

We got a lift off her friend, and spent a while browsing plugs and labret bars for his soon-to-be-pierced lip. I bought a cherry blossom plug in 14mm, and some Directions hair colour in a dark pink; I had my fringe and the hair underneath bleached and dyed bright pink last week, but the colour refused to grab and it’s mostly copper. A nice colour, but not what I wanted, so Z is going to attempt to fix it for me on Friday.

Back at her house, I chatted to Z’s boyfriend, Steve, while she pierced her friend. I suppose it probably looks weird typing that; I can assure you we’re not using frozen sausages and earrings. Z and I met on a piercing forum and we’re both quite obsessive about doing things right; the combination of BPD and bipolar works quite well in that respect.

I saw O today. We both have a friend in common, so it was bound to happen eventually. I saw him walking towards me and said “well, this is awkward”. He sat down and said hello. I asked how the kids were, and he said “fine”. I sat and smoked a joint and wondered quite why I’d chosen that particular time to visit. Our friend said, “yeah, sorry. I didn’t think. Are you two on good terms now?”.

I looked at O. Are we? Were we, rather, since we haven’t spoken for over a year?

“Yeah. Well, I hope so”, O replied.

I looked at him for what felt like a little too long. He’s the one who stopped speaking to me, after all. And for the second time today I decided to say “fuck it”, and agreed.

O can’t hurt me now. I realise that. So what harm would chatting over a friend’s dining-room table do?  Once, I loved O more than life itself, but it was an unhealthy love. It was bourne of fear, jealousy and BPD-obsession. As we chatted about his new house and his son helping him wash the car, I didn’t feel a single twinge of pain for the past. Once, I believed that I would physically tear apart if O left. Now… I have S. I have a boyfriend who – for the first time – makes me feel safe and valued. My love for S eclipses anything I’ve ever felt before. I adore him.

Something in me suspects that O and I will never be friends again. Maybe we’ll bump into each other now and then, but the story’s over.

I never thought I’d say this, but I’m glad. It was a part of my life which didn’t have S in it, and I’ve come to realise that a life without S means nothing to me. In a way, I suppose I’m grateful to O for him hurting me. If he hadn’t, I’d never have met someone so wonderful.

Falling through the cracks

I was chatting to Z on Facebook earlier, and the subject of J came up. When we first moved in to the Georgian house, everything – and I mean everything – was falling apart. The walls were full of cracks and running with damp. There were no electrics and no gas, and the kitchen had wires hanging out of the walls. By the time I left six months later, there were few improvements; the house – once utterly beautiful if records about it were to be believed – was pretty much a cracked shell waiting to fall down. I messaged Z wondering if the cracked exterior wall had fallen down yet, and it got me wondering what J was up to these days.

Despite his paranoia and obsession with protecting himself from the powers that be, J’s Facebook wall is open for anyone to look at. It’s always confused me; this is the guy who bought a crossbow and ball bearings to kill anybody (“instant death with a headshot”) who was planning on breaking into the house, and who sent text messages in code in case the government read them.

His wall was no surprise. Links to petitions demanding legalisation of cannabis. Articles about Anonymous. Bad jokes and inappropriate sexual comments female friends he added purely to try to seduce.

It made me a little sad. Despite everything J put me though, J is sick. Very sick, unless his mental health’s improved since I left him. Somehow that seems unlikely. While we were together, J made no attempt to control or help his bipolar. After I’d walked out on him, we tried to stay friends. Well, I did; I was worried about him – he’d not long been released after being sectioned for months – and despite my reservations, I wanted to make sure he was okay.

 At first he really seemed to be trying. He took his medication – it was easy to tell because he put on weight and ate like a pig – and spoke to the community care woman who visited weekly. After I told him I’d started seeing S, I never heard from him again. To this day I have no idea whether he stopped talking to me because he was jealous, or because I had served my purpose.

J not only slipped through the cracks, he kept right on going to the very bottom. After multiple sectionings, arrests, psychotic episodes in public and a spell of homelessness, J is still sick. He’s forty-two now and, having been diagnosed with bipolar at twenty-six, is still just as fucked-up as when it all started.

As well as sad, it makes me angry to know that, like him, I slipped through those cracks. There were so many chances for somebody to step in and suggest that something was wrong, but nobody ever took the time, and it’s only with retrospect that I realise just how many times I was shrugged off as being “just a teenager”.

Self-harm was, I suppose, the first real indication that something wasn’t right. Unlike some, I had no desire to hide the blood or scars; they were my battle-wounds and if people didn’t like it, then tough. I did, however, hide it from my mother and she only discovered I’d been cutting myself with dismantled Bic razors when the school headmaster summoned me into his office one day and asked me about the scars.

You can always come and talk to me, at any time. But you have to realise that school is a tough place and you’re a bit of a square peg in a round hole. You need to attempt to fit in more“.

Like I was just doing it to be different.

When I was first sent to the psychiatric unit, I was labelled “completely sane”. Despite the obviously fresh cuts on my arms and habit of running straight to the toilet after meal times to throw up, the staff said I was okay. I always wondered why they didn’t see straight through me; nobody gets locked away in the crazy home unless there’s something wrong, and my habit of smiling constantly and always being polite to staff should have shone like a beacon. I was faking it all and keeping the madness locked inside so I’d be sent back home. Nobody acts that perfect unless they’re crazy and trying to get discharged.

During my second admission – a few weeks after my plot to be released worked like a charm – I eventually broke down and the staff concluded that perhaps I was a bit troubled. Still, their attentions were focused on the more severe patients – the anorexics and the violent kids – so my terror at being faced with food and the collection of  razor blades in the bedside cabinet were overlooked. When I stood and banged my head against the wall just to feel something, nobody saw. Staff left me mostly to my own devices, because I was “okay”.

At fifteen, I met the man who became my first serious boyfriend – eight years older and with Asperger’s Syndrome, he was possessive and prone to fits of temper but I worshipped him because he paid attention to me. When the police came months later, they said I didn’t have to leave if I didn’t want to. The chief told my mother that I was competent enough to make my own decisions. Legally I was still a minor, but the police ruled that I was capable of understanding the risks.

At sixteen, I was taken to the local A&E with a stomach full of paracetamol and coffee. A member of the crisis team was called in to speak to me, and I told him it was an impulsive act; just a cry for help. It wasn’t. I was allowed to go home the same day. With the second overdose at seventeen, I was kept on suicide watch for 24 hours in the local psychiatric hospital. I kicked and screamed as I was taken in. Cried the entire time. The mental health team decided I wasn’t a danger to myself and sent me home.

A few months later I ended up back in hospital after taking my entire pack of venlafaxine and a fair handful of diazepam. I had a fit in college, having woken up still alive and disappointed. Unconscious for a while, I missed any procedures which may have been done on me when I arrived. When I woke my mother was sitting on my bed, crying.

This time they didn’t want to let me go, but not because I’d taken more than enough tablets to kill an elephant. I needed all sorts of injections and IV’s. I was unable to pee and needed a catheter, which I pulled out more than once because it burned like hell. I’d done some actual damage this time, and needed medical intervention.

No psychiatrist or crisis team was called this time. The fact that I’d taken an overdose was never mentioned. I went home a few days later – earlier than my consultant would have liked – still unable to pee and with a bruised body from smacking into the floor when the fit started.

Somebody should have seen me falling.

In more ways than one.

One lovely blog award, and some big confessions

lollipopsandrazorblades and lifeonaxis1 have both kindly nominated me for the One Lovely Blog award; a nice surprise on a day where I’m coughing up my lungs and getting through boxes of tissues whilst suffering with the virus from hell. Seriously, I haven’t been this unwell in a long time, and I’m cursing everybody I came into contact with last week. I’ve spent the past two days in bed, wanting to curl up and die. That the virus coincided with my little slip up is a particularly frustrating coincidence; I suspect it’ll take some time to recover.

Anyway, I owe lollipopsandrazorblades a huge thank you for my nomination; check out her blog for an amazing and humbling amount of honesty. Also, massive thanks to lifeonaxis1; she’s never been nominated for an award before and shares my reservations about award posts. Visit her blog, because she has some amazing words to say about the mental health system.

The Rules of Acceptance:

Thank the person/people who nominated you and link back to them in your post.

Share seven possibly unknown things about yourself.

Nominate fifteen or so bloggers you admire.

Contact the chosen bloggers to let them know and link back to them.

.

Seven things

Writing seven things about myself is always difficult; when you write with the intention of being totally honest, there’s very little to confess to. What could be shocking or surprising enough? With that in mind, I’m going to aim for the mundane.

1. I realised today that I’m entirely stuck in the late 80’s/early 90’s. Not in the trendy “LOL I’m so retro” way, but in a nostalgic way I can’t bear to let go of. Despite everything which has happened, I did have a happy childhood until depression and anxiety took over. I grew up in a semi-detached house in quite a suburban area, and although my mother was possessive, I was happy with what I had. I remember long sunny days in the garden or cul-de-sac down the road, riding my sister’s yellow scooter and visiting the family next door to play on the Master Station with my friend Daniel. I have amazing memories of running across my primary school field in a blue-and-white checked dress and lace-topped ankle socks, throwing grass and laughing.

I know most have rose-tinted memories of their childhoods, but because I was so prone to curling into myself emotionally (I’ve always been shy), I found beauty and fascination in the most simple things. Primary school was an incredibly happy time for me, and I look back on it with fondness. Not only do I look back, but I spent a lot of time thinking and, most nights, dreaming of it. I watch old TV programmes from that time and listen to the music I heard as a kid, just to recreate the feeling of pure uncomplicated living. It’s been a long time since life was uncomplicated.

Contrary to popular belief, I wasn’t a boy.

2. I love Erasure. And Bronski Beat. 80’s synth-pop and New Wave have always made me happier than anything else can, and I refuse to apologise for it. None of this is a secret or unknown, but wonderfully naff nonetheless.

3. Although I smoke cannabis for pain, I also sometimes smoke so much that I pass out; just to calm my fears. I know there’s a lot of controversy surrounding mental illness and dope, and all I can say is that I’ve known people who’ve smoked it all their lives and never become mentally ill. I’ve known others who have a diagnosed disorder such as bipolar who use it to control their manic phases. On the flipside, my ex, J, got no benefit from smoking weed; he was a stereotypical pothead and didn’t seem to understand that his bipolar got much, much worse when he smoked, and calmed down significantly when he stopped.

I wholeheartedly believe that all drugs are dangerous if used incorrectly, but if you treat the majority of them with respect, perhaps they can be a good thing. I don’t see a difference between prescribed medication and illegal drugs; after all, morphine can be diagnosed for back pain, but heroin (the same thing) is illegal. Codeine kills thousands of people a year. Addiction to prescription drugs is higher than ever, if statistics are to be believed, yet these addictions are far more accepted by society than addiction to illegal drugs.

Cannabis stops me having panic attacks. Stops them dead, with just a few tokes. Meanwhile, diazepam takes time to work and is highly addictive. Can kill you. So if I choose to use a class-B drug rather than benzo’s… is that so wrong?

But yes. Sometimes I smoke for the hell of it.  Because I like it.

4. For a long time, I lived in an imaginary world. A world were everybody was nice and respected me for my invented talents and very unlikely beauty. As a child, I often spoke these fantasies out loud and the habit carried on into my teens, leading to a child psychiatrist assuming I heard voices. I didn’t; I just confined myself in a fantasy world to the point where I believed it all. I didn’t live in the real world, but in a false reality. What happened, only happened in my head. At some point, the childish fantasies became a psychosis and that’s when everything changed in my happy little world; I invented slights and insults, and became convinced that, rather than adoring me, everyone loathed the very ground I walked on. Being bullied in secondary school pushed me further into the fake reality and only confirmed (in my addled brain) my suspicions that everyone was conspiring against me.

I foresee a blog post on this subject.

5. At the height of my bulimia, I ate food from the rubbish bin in the kitchen, shovelling damp biscuits into my mouth then throwing them up in a green plastic tub I kept especially for the purpose. I threw up in plastic zip-lock bags and hid them under my bed, surrounded by empty crisp packets and chocolate bar wrappers. I ate, then drank handfuls of water from the bathroom tap so I was as close as possible to the toilet. Sometimes, I’d vomit when I’d only eaten a small handful of carrots, terrified of the calories seeping into my veins somehow.

6. Once, I had sex with a man who was in his mid-forties, because my ex-fiancé told me he wanted me to sleep with someone else. The whole situation is somewhat convoluted so I won’t go into every single detail. My ex-fiancé and I were fighting constantly, having drifted apart sexually and emotionally, and he started getting close to another woman; Ally, who he now has two children with. I took the phrase “sleep with other people” to mean “I want to sleep with other people”, and, in stupid desperation to hold onto a decaying relationship, I hung my engagement ring on a chain around my neck, swallowed what little I had of my pride, and ended up in bed with a balding man with a constant runny nose and the inability to finish without jacking off over my chest. I remember staring at a slight damp spot on his bedroom ceiling and realising I had reached the lowest moment of my life.

7. Every morning when I wake up, I want desperately to be back in my dreams. Not because they’re happy or interesting, but because they’re so familiar. Since starting on antidepressants I’ve had incredibly lucid dreams which all take place in the same fictional town. Over the years I’ve explored houses and run down streets which are more like home to me than any place in the waking world.

It’s difficult to nominate other bloggers for this award, since I’ve already nominated so many. The following links are to blogs I read for their honest content and because, in different ways, they inspire me.
The Secret World of S / ryoko861 / May I Be… / bipolarmuse / Jacqui Talbot / NZ Cate / My Ox is a Moron / whereimstaying / Resiliant Heart / Destination Girl / Displaced Housewife / lazyhippiemama / Word Flows

I’d love to say something about each blogger because each of them deserve recognition, but I’ve already written over a thousand words… perhaps the mundane confessions weren’t all mundane.

In which I step outside my comfort zone, and enjoy it

Our kitchen is what you’d call a ‘galley'; if a galley could ever be so small that one person barely fits in it. On one wall is cabinets and a tall fridge and on the other are appliances, squashed together and sometimes inaccessible behind organic cleaning products and spare shopping bags. There’s little wallpaper – it was stripped off years ago and somehow never got finished – so the walls are mostly bare and nicotine-stained. The ceiling is yellow and the lino on the floor is slowly peeling up.

Because it’s so small, my family tend to take it in turns to use it; even making a simple cup of tea is a military operation if more than one person is standing near the kettle. Cups tend to build up in the drainer and teaspoons clutter up the sink.

Earlier, I was making a brew for my mother and I. She’s ill at the moment – I suspect a chest infection/bronchitis – so I’m trying to help a little around the house today. I feel guilty for not being able to help more, but I had a busy weekend (more about that later) and fibromyalgia has sapped all my energy. I’m not in pain, just exhausted. Like my body wants to fall on the floor and stay there.

My dad walked in as I was pouring the tea and trying to juggle making a sandwich while my brain feels like it’s stuffed with bubble wrap. As I said, the kitchen is small and as he squeezed past me, I couldn’t help but feel irritated; it’s a one-person kitchen, we’ve all agreed on that. I stood patiently while he fiddled with the back door a little before wandering back into the living room. Almost immediately I felt guilty; my dad’s well into his sixties, he’s not in great health because of his drinking, and we suspect he’s possibly suffering from some sort of dementia, probably brought on from years of downing spirits and cheap wine every night.

But then I thought, why should I feel guilty for getting irritated by him? After all, I’m the one who made the decision to distance myself from my father; I can’t go getting emotionally involved if I’m trying my best to ignore the man who made my mother’s life hell until she got up the guts to leave him after one too many drunken punches were thrown. He may have been fantastic in my childhood – my hero in fact – but I refuse to smile at a wife-beater. I just can’t allow myself to do it. I can’t be a hypocrite and loathe violence but chat to the man who pushed my mother down the stairs. The more I thought about it, the more irritated I got. My father never once visited me in hospital when I was seriously ill with acute cholecystitis and pancreatitis. He never spoke to me about my mental health; not when he was sober, anyway. He doesn’t even say hello when he comes to my mother’s house. He’ll grunt, or say thank you if I make him a cup of tea, but he doesn’t say hello.

I made him a cup of tea. Told him it was in the kitchen, and came upstairs.

After my GP appointment on Friday, I sat around for a while, smoking and watching E.R (obsession of the moment; I always have an obsession. Last time it was House. When I was younger, I played Age Of Empires for two years straight) and waiting for the next medical adventure; an appointment with the podiatrist who’s been checking up on the tendonitis for the past few months. It went as well as it could; I have more flexibility than last time, but it’s still swollen so I’m being referred to rheumetology again. Different doctor this time, but the same department. Sometimes I think my life runs in circles and I’ll never break free.

I don’t quite understand why they’ve passed me on to rheumetology; the podiatrist didn’t explain, or if he did I was too anxious of being in hospital to take any of his advice and feedback in. I can only assume he thinks there’s something wrong with the joints in my foot. Same old, same old.

My best friend, Z, was 24 years old on Sunday, and she invited S and I to a barbecue at her house on Saturday night. My initial reaction was the usual; I didn’t want to go. I didn’t want to speak to people I didn’t know – her friends, her family – and I was worried I’d get too stressed out and retreat to a quiet corner and become my usual reclusive self, ending up going home and failing at yet another social situation. However, this weekend I felt the fear and did it anyway – with S’s help – and not only went to the barbecue, but had a fantastic time. S and I even stayed over in the spare room, snuggled together under a bright yellow duvet and shielding our silent midnight sex with a spare curtain draped quickly over the bare rail.

.Z’s two-bedroom house is rented out by her boyfriend’s parents. When she told me she was moving in with Steve, I was jealous; the most I could hope for was a small flat or paying well over the odds for a tiny house in a dodgy area. They have a huge garden and enough room for their animals; a cat, a corn snake, two degu’s and whichever cat from next door wanders in. However, it soon became obvious that she and Steve were struggling to cope with running a household. The first time I visited, the living room was filled with boxes and half-empty cups and the carpet hadn’t been hoovered since they moved in weeks earlier. The kitchen was a death-trap, and the bathroom had no door. Steve and Z have a strange relationship. I’m sure they love each other, but they’re so different to S and I, and sometimes I can’t understand how they stay together. Z is incredibly clingy and possessive, and always demanding reassurance. She doesn’t always take her medication for bipolar and I’ve stood awkwardly on many an occasion while Z overreacts to something Steve says and starts asking if he wants to break up with her. It’s uncomfortable, and reminds me a little too much of myself.

I confess, I wasn’t at all prepared for Z’s birthday. I’ve been losing track of dates recently – I have no idea what today is – and I have a really difficult time remembering birthdays anyway. I try, but it just doesn’t happen. I still can’t remember my brother’s birthday after knowing him for 27 years. Numbers just stress me out too much. Typically I hadn’t remembered  to buy Z a present, so I had to do a mad dash around Tesco’s on Friday evening while S and I were shopping for pizza and Fosters, grabbing a baked eyeshadow set and a box of Thornton’s chocolates; hardly innovative, and entirely crap for a best-friend gift.

My friend G (we actually call him G as well, it’s not just a nickname) was invited too, and walked up to S’s house with his staffordshire bull terrier so we could get a taxi together. G never spends money unless forced and the only reason he gets away with it is because he’s so charming. I call him a friend, but I’m still not entirely sure what that words means; we speak, chat on Facebook, and he used to live with me when I was in a relationship with J, does that mean he’s my friend?

Sometimes I think I’ll never understand social interaction. It just doesn’t come naturally to me.

Z was quiet when we got to her house – I was worried she hadn’t taken her meds again – and she barely acknowledged our presents. I instantly started panicking; I know I’ve been an awful friend and isolated myself, but she can’t leave me. She can’t abandon me; losing people has happened too many times now for me to cope with. Z leaned into me and whispered, “I was going to call the whole thing off” then pulled me into the kitchen. As partygoers pushed past us, she told me somebody had hung themselves. She said who but I was too Lyrica-muddled and panicked to take it in. Somewhere in my head I was still stressing over her lack of reaction to my admittedly shitty present.

A couple of years ago, Z’s cousin hung himself. She took it very badly, and still gets tearful if his name is mentioned. She told me that knowing somebody else who’d commited suicide in that way brought it all back for her. Everything brings it back for her. I tried to hug Z, but she wouldn’t let me.

S was chatting with Steve and G, poking around the barbecue and trying to be all manly, so I went to talk to Z’s next door neighbour. Ann is in her fiftes and lives with five cats in a house filled with nick-nacks and photographs. She has severe osteoarthritis and can barely walk, and she’s awesome. We sat in her house and rolled a joint each, chatting about the painkilling benefits of weed and my mother. Nicely chilled and calmed, I went back to the party, bumping into my friend (again, friend…) Debbie. I’ve only met her once before – when I was ill in hospital – and although we’ve chatted a lot on Facebook, I’ve always made excuses not to meet up. I’m too nervous. Being thrown into the situation suited me much better; she hugged me and we chatted while I broke the Lyrica rule and drank cider and Fosters. I figured if I was going to be ill, I may as well go out in style.

A couple more joints later, I was feeling okay. Z had brightened up (although she was still somewhat aloof; understandable),  and watching S holding the corn snake and marvelling over the muscle structure cheered me up in a way only geeky boyfriends can. I started chatting to other guests – there were about ten in total – and actually mingled. I never mingle. I’m very anti-mingle.

The night was a success, and I’m glad I made the effort to socialise for once. We ate birthday cake and played with G’s staffie, throwing balls across the garden for him to catch. Cooked burgers and watched S pour a whole can of Fosters down himself; nobody’s let him live it down. As it went dark we set up a plastic table and some chairs around the back of Ann’s house and smoked blueberry and weed shisha, accompanied by hash brownies and Jägermeister shots. Played music on our phones and talked about everything and anything.

On Sunday, Z and I left the men to do some work in the garage and went to a local food festival. It was shutting down a little as we got there but we still had a good time; loads of free samples and I tried anything which had chilli involved. Afterwards Z bought me some chips and we walked back to her house. I confessed that I’d been feeling guilty over not seeing her often, and she said, “yeah, but it’s your mum, she’s too controlling“. True, and I decided not to mention the other reasons; fear, anxiety, paranoia. Thought I’d just pretend it was all my mother.

I’ve promised myself I’ll make more of an effort to socialise; I’ve realised that when I do, I enjoy myself. As long as I have a safety net of dope and somebody I know to look after me, I’m okay.

I’m not going to die.

Living with chronic pain – the reality.

Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body.

The name fibromyalgia comes from three Latin words:

  • ‘fibro’ meaning fibrous tissues, such as tendons (tissue that connects muscles to bones) and ligaments (tissue that connects bones to bones)
  • ‘my’ meaning muscles
  • ‘algia’ meaning pain

However, the pain of fibromyalgia does not just affect the muscles, ligaments and tendons, but is felt all over the body. It results in widespread pain and extreme tiredness. People with fibromyalgia may also have:

- NHS Choices

I was diagnosed with fibromyalgia in 2006. Within a couple of years, I had gone from an active girl, going for eight-mile walks every day and swimming regularly, to someone who spent days in bed, taking a cocktail of painkillers and swapping my amazing shoe collection for a series of comfortable slip-ons and trainers. To someone who often couldn’t fasten their own bra or manage to sleep.

The problem with a fibromyalgia diagnosis is that, although it’s in the British Medical Journal and accepted as a viable diagnosis by medical professionals (after ruling out more serious conditions like MS), many people still refuse to accept that somebody can experience intense pain without an obvious, visible, medical cause. In people with fibro, the nerves overreact to pain and can’t distinguish between a small touch and a smack in the face, meaning that sometimes even placing your hand on their shoulder can cause the person intense pain, akin to the skin burning and muscles tearing.

Fibromyalgia is usually diagnosed by testing the patient for certain ‘pressure points’ around the body. These points are extremely tender, and touching them lightly causes pain in that area. However, the pain of fibro isn’t limited to those specific points; it’s just a diagnostic tool rheumatologists use.

My own diagnosis consisted of a long talk with Dr. B – the consultant who also diagnosed me with osteoarthritis a couple of months ago – about my mental health problems. At the time, I didn’t see how it was relevant; my pain was physical. I now realise that he was trying to rule out pains caused by depression; a common symptom.

Dr. B poked me in the back and thighs with his fingers, asking if it hurt. Every time it did I squeaked and shot across the room. We spoke about my history of gastric problems and the tiredness I’d been unable to shake since my teens. The lack of sleep and never feeling awake. The regular blinding headaches and the pains in my jaw and neck which sometimes hurt more than I could cope with. Written down, it doesn’t seem so bad; everyone gets tired, everyone has headaches. Everyone goes through periods of bad sleep. Strange pains with no explanation probably affect everyone at times. However, when you’re always tired, always in pain, always running to the toilet and laying wide awake for days at a time… fibromyalgia is relentless. You can improve at times, but it comes back. Fibro-flares can last a day or a year, and the gaps in between aren’t exactly a relief; the pain just lessens a bit. Everything’s still hurting.

Tiredness as a symptom is often looked down on by the layperson. It sounds quite flimsy; an easy excuse for being lazy. However, I have been tired for years. Unless you have a chronic condition which affects your sleep, you just can’t understand how constant fatigue can destroy a person. Suicide isn’t uncommon.

Society as a whole seems to view chronic pain with suspicion. Even in cases of serious – even terminal – conditions like MS. Pain doesn’t seem to be a good enough excuse for claiming disability or having a carer. Unless you’re in a wheelchair, you may as well be making everything up.

Having your symptoms played down (“it can’t be that bad”) or denied entirely (“I heard from my friend’s uncle’s cousin that fibromyalgia/arthritis can be cured by a juice diet”) wears you down. When you live with chronic pain of any sort, you learn very quickly what you can and can’t do, and what will or won’t help. You become an expert on the subject, and while advice may be well-meant, it really doesn’t help. Telling somebody they’ll ‘get over it’ is useless when most of these conditions are life-long or can last for years.

In my comments on my post about privacy I mentioned the attitudes of members of a forum I used to post on. I never hid the fact that I was classed as unfit to work; disabled, in the medical sense. I was open and honest about the benefits I received – I’m on DLA and incapacity – although I rarely mentioned fibromyalgia unless somebody else brought it up; I didn’t want to be defined by any conditions I have. I’d already had abuse thown at me when I admitted to suffering from depression, and I knew I couldn’t take insults and accusations from strangers when I was already struggling to accept my position in society.

When you can’t work, you feel useless. The issue of employment and benefits is a hot topic in the UK right now, and most newspapers seem to revel in accusing everyone without a job of being a scrounger. The unemployed and the unemployable are lumped together with no leeway for disability, no allowance for redundancy or personal issues. I try to avoid the news precisely because of this attitude, but it’s difficult to miss when huge headlines scream out from paper stands with a photograph of a man with a supposed bad back who’s been living  a secret life as a judo instructor while claiming disability benefits. These cheats are in the minority, but society sees these photos and assumes everyone with a bad back is jumping out of aeroplanes and partying.

I’d like to credit humankind with more intelligence and free-thought, but I can’t help wondering if the majority looks at individuals like me and judges me for not having a career. When so much of what a person does is related to what they do for a living, it can be hard admitting that not only do you not have a job, but you perhaps never will. Taxi drivers often assume I’ve been at work or am on a day off; I used to try to explain, but the majority stopped speaking when they learned I didn’t have a job of my own. Now, I just say “yeah, long day” and leave it at that, or say I’m jobseeking. I shouldn’t have to explain my situation to total strangers, yet it happens all too often. I’ve stopped chatting to others in the street because they inevitably ask what I ‘do'; somehow, I don’t think they’d appreciate me replying with, “lie in bed feeling sorry for myself, mostly”.

For the past year, I’ve been pretty much bed-bound during the week. Since starting on Lyrica, I’ve been able to sit up and move around the house more easily, but it’s sometimes still difficult to make it down the stairs when my legs feel like they’ve fallen off. Pins and needles is common; my right side often goes totally numb. You just can’t walk on a dead leg, as much as you want to.

My hands still tremble, although they’ve improved slightly due to medication. Dropping cups and bottles of milk is common, as is walking into stationary objects when my legs decide to go the opposite way without permission. My knees often lock while I’m walking down stairs, and I’ve fallen over more times than I’d care to remember over the past few months. I’ve damaged my elbow, twisted my ankles, banged my head and bent my fingers back. I pull doors into my own face because I can’t judge distance due to being distracted by the pain.

I can’t cross roads without help; I rarely go out on my own now because I can’t cope with struggling across a busy street into the path of incoming traffic. I can’t know if my knees are going to give in half way across. I find that using a walking stick (black, with coloured flowers) helps with crowds – people tend to move if you’re obviously struggling – but I still get jostled and pushed. Maybe it’s my age; you don’t see many 20-something’s walking around with a stick in this town. Especially not ones with 36 piercings and visible tattoos and bright hair. I occasionally wonder if I’m being assessed by strangers because I obviously cope with the pain of piercing needles but not with burning sensations running through my arms and shoulders.

I don’t cope. It hurts like hell, but it’s a pain I can control. When your body betrays you, you need to hold onto something you have power over. When the needle goes into my body, I choose where and when. I choose how much pain I’m likely to feel. Fibromyalgia and arthritis don’t give you that choice.

There seems to be an assumption that life on benefits is taking the easy option. I frequently hear tales of 40″ HD tv’s and cars galore; where do they think that amount of money comes from? From DLA and incapacity, I’m ‘earning’ close to minimum wage. My television (20″, not HD) was a gift from my parents. My iPod was a Christmas present. S bought my PS3. I don’t have a car – I can’t drive, what with being disabled – and holidays are rare. The only time I’ve been abroad is to Germany on a school trip.

I  lived with my mother for so long after splitting with J because I couldn’t afford to rent on my own; with S, we can split the cost. I still pay my mother rent; it’s not free.

I will never own a house unless I inherit one or come into money through the lottery. I have no credit rating, and will never be allowed a mortgage as long as I’m ill. I don’t get handouts; I get help towards extra costs my disability causes. Costs such as handfuls of medication – I don’t get free prescriptions or a reduction – and taxis because I can’t always walk to the bus stop. Aids like walking sticks and adapted kitchen  equipment so I can open jars and unscrew lids. Clothes without fiddly buttons and shoes with extra support. Costs for travel to hospital appointments; I often have to get a taxi 20 miles or more first thing in the morning to see specialists, which can cost over £50 there and back.

Although the people closest to me show understanding, strangers are often callous and cutting with their remarks.

You’re what’s wrong with society” – like I asked for this.

You go to the pub, so you can work” – On Fridays, I meet S at a pub near the hospital. He likes to drink a few pints at the end of the week after working in the lab for very little money or respect. Before Lyrica, I’d have a couple of pints with him; is that so wrong? I’ve spent the week being in pain, do I not deserve a chill-out with my boyfriend? Are the disabled not allowed to drink? I sit down, I don’t dance or do gymnastics.

Pothead/druggie/addict” – I understand that some people are very anti-drugs, and have a preconception of those who take them. Those who smoke weed are seen as lazy drop-outs. Yet those who judge often have no problem with legal drugs such as paracetamol or codeine. Cannabis is a proven painkiller; the studies have been done, and I’m living proof that smoking a joint can calm muscle spasms and make everyday tasks easier. I’ve had addictions to painkillers – codeine, tramadol and morphine – and I feel far more stable and healthy for swapping those for cannabis. Codeine damaged my liver, tramadol damaged my mind, and morphine destroyed my whole life. Cannabis has brought me out of myself, soothed pain and calmed my panic attacks; so why is it so bad that I choose to smoke it? It’s my choice, and I could easily push my liver too far and die if I took all the painkillers I’d need to dull the pain. Instead, I just continue damaging my lungs –  I smoke anyway – and accept it as a side-effect of treatment. All medications have negative side-effects. I was taking 40 co-codamol pills a day; how can that  be better just because it’s legal?

You look fine” – well, thanks I suppose. That’s because I cover my face in trowelled-on foundation and bronzing powder to hide the grey pallor of my skin. I make myself look as presentable as possible because what 20-something wants to look like a stooped lump of sweaty, pained lard? I style my hair because it looks nice when I do. There seems to be a belief that the disabled can’t possibly look healthy. We fake it, very well.

Chronic pain isn’t fun and it doesn’t make you rich. It’s not an excuse to avoid work. I would kill to have a job. As a child, I had dreams of growing up, having a career and being independent. I wanted to be a paleontologist or a secretary and day-dreamed about my office and taking money home. Life holds no guarantees though and, through no fault of my own, I ended up with arthritis and fibro, along with mental illness. I wouldn’t expect to ace a job interview anyway; what business will allow weeks off with no notice? Who would help me get out of chairs since I can’t stand for more than a few minutes? I’d need time off for tests and appointments, someone would have to help with lifting things. It’s just not practical and I’d cost the business money. I’d be a liability.

Some people do abuse the welfare system. I’m not in denial of that. However, far more receive it for genuine reasons and without it life wouldn’t be worth living. Without it, there’d be no medications. No rent. No food. No clothes. No quality of life at all.

Some seem to think that’s what we deserve for daring to be unwell.

Tomorrow never comes.

Woke at 5.30am, reeking of fake tan and feeling wide-awake. A few hours later, I’m sitting up in bed, half-watching the first season of ER and trying to pick dried wax out of my eyebrows and off my face. S is taking me for a meal tonight at our favourite Indian restaurant, so I’m trying to remove all ten tonnes of body hair before he sees me; having polycystic ovaries is a nightmare sometimes. I’ve been managing the symptoms quite well for the past few years – losing five dress sizes almost overnight in hospital helped – but it’s slowly getting worse again.

My diet is failing miserably. I lost 6lbs, then started binging again. Not badly; just enough to halt any progress in its tracks. I’ve been avoiding the Slim-Fast tins in favour of bowls of cereal and toast, convincing myself I’ll get back on track tomorrow.

It’s never tomorrow. I’d do well to remember that.

After the stress of yesterday, I slept like a baby last night. Drifted off around 9pm and slept right through. I’m not even sure I can remember dreaming – which is incredibly rare – and when I woke, I didn’t feel the usual urge to snuggle under the covers and put off beginning the day. Rolled a joint, made a coffee, checked my emails and played some Boggle, all before 7am. Considering I’d been getting up around 3 in the afternoon and going to bed when the sun rose… I think I’m doing well. There’s no doubt it has to be down to the Lyrica; nothing else has changed.

When we bumped into S yesterday, my mother chatted to him about how Lyrica’s worked for me:

“It’s a miracle, isn’t it?”

S gave me a hug and looked me up and down:

“It’s great, it’s fantastic seeing her so bouncy and happy again”

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.

A fairly boring day

After days of worrying about her reaction, I finally sent a message back to the woman S and I were going to rent the house from.

Don’t worry about the house at all. It was an option for us yeah, but there are other places out there, and it’s got to work for you too.

I was concerned it may come across a little cold; I was tired and stoned, and didn’t really want to contact her. Her reply, though, was much better than I expected.

Thanks for telling me. I’ve been really quite worried about you and how you’d take the news. However, it sort of pales into insignificance compared to your health and well being. I just feel relief that you’re on the mend

She offered us any furniture she’s getting rid of, if S and I manage to find somewhere to live. So although I was upset when the offer fell through, I do feel better now. Another possible rent has come up, although it’s only 90% certain it’ll happen. Still, it’s something, and much better than dealing with estate agents.

Fibro hit hard today. I woke at midday to mum tapping my knee, asking if we were going shopping in the afternoon. I said no and rolled over, determined to spend another hour in bed, but then she said those immortal words; “we’ll only have to do it tomorrow”.

Point taken, I half-heartedly put some makeup on and smoked a joint, trying to ignore the feeling of hunger in my stomach. The diet/healthy eating has been going well, but I over-indulged over the weekend and the carefully-constructed mechanism to pretend I don’t feel hunger fell apart a little. I finally weighed myself, and in the past three weeks I’ve lost four pounds. No binges, no cutting calories dramatically, and no purging. There’s a small voice shouting at me – telling me that four pounds in three weeks is rubbish – but I’m managing to mostly ignore it.

I’ve been wearing size 18 jeans for two weeks. They’re huge on me. I know it’s ridiculous to wear clothes which are too big, but I’m still struggling with working out how much space I take up in the world. It’s never been clear to me just what I truly look like, and I know that the reflection I see in the mirror probably isn’t anywhere close to being a true representation of me. My mother is convinced I have some sort of body dysmorphia. Maybe she’s right.