All these things that you don’t know. It seems so much better that way.

Even now, despite everything, there are things I cannot and will not say.

 

Image

After the years (and it has been years, now) of tests, needles, white blood counts, pissing in little bottles, waiting, sleeping in my own sweat, painkillers, vomiting and counting the isolated days, there are still things I don’t want to admit to.

The ulcers. Deep in my cheeks. On my gums.

The dreaded nausea, keeping me awake. The vomiting.

The itchiness. The sore throats. The coughing. The headaches. Chest pains. Shortness of breath. Dark, sickly urine. Stomach cramps.

All these things I am supposed to tell a doctor about at once, but part of me – the part which is stronger, more willing to fight – refuses to confess, because they are all symptoms which mean the methotrexate may not be treating me as kindly as the doctors had hoped, and all symptoms which may mean the treatment needs to be stopped immediately. I know it’s far from sensible, but what can I do? In the past few weeks, the pain and swelling has reduced dramatically. I can walk again. I. Can. Walk. Again. I can make a cup of tea. Sleep without being woken by knives digging into my skin. I can have sex with my boyfriend again. I can put a sheet on the bed. Shower when I need to – mostly. Arrange a bunch of flowers. Fasten buttons.

All small things. All things which matter.

Without the medication, I am nothing once more. I don’t want to be nothing.

Wrong way on a one way track

Can you help me remember how to smile, make it somehow all seem worthwhile?

How on earth did I get so jaded?

Depression is a cruel, cruel illness. It robs you of the ability to give a damn.

I find it incredibly difficult to write about depression with hindsight. It’s far easier to force myself to open the laptop when I’m feeling utterly sunk in misery and numbness, and explain it in real time. Otherwise… I can’t begin to describe how it feels to be trapped so far within myself that the outside world is just a whisper in the background.

For weeks – months – I have slept during the day and lain awake at night until the sun rises. Attempts at righting my sleeping habits have been pointless; the pain dictates what I do, and when I do it.

sleeping in black and white

So, am I free? Almost. Today, I managed to wash the dishes, tidy the bedroom, water the plants and do two loads of washing. That’s that most useful I’ve been in months. Strangely, I haven’t needed a single painkiller today up until thirty minutes ago. Last night, my foot was swollen to the point where the outline of the damaged tendon was clearly showing, so I don’t know why I’ve been granted a small respite today. All I can assume is that my plan of keeping my foot off the floor as often as possible (I’ve invested in crutches) is working. True, I hate having to stay on the sofa, and it’s horrible knowing spring is somewhat here but I can’t go for a walk or even down to the garden (too many holes in the pathway), but perhaps it’s paying off. It has to be better than last month’s buckets of ice water and boiling hot towels.

I’m trying everything. Which is… a good sign, I think. Over the past week I’ve started thinking about the future, and that’s something I didn’t think I’d feel happy feeling. I’d given up entirely, and I almost felt safe there. Does that make sense? Failure is… easier, somehow.

On Saturday, I had an MRI at Liverpool Hospital. The week before I had ultrasounds at the same hospital. In nine weeks, I see the rheumatologist again. Until then, my GP is giving me regular codeine prescriptions and, if I need them, I can ask for morphine patches. I’m wary of doing so; I don’t want to leave myself with no options. I get used to opiates far too easily.

codeine

So… the codeine. It’s going okay, actually. There have been a few days where I’ve taken more than the recommended dose, but that was purely through pain. So while I’m still not entirely responsible… I’m learning. I’ve learned a lot of lessons recently, and one of those is that painkillers are important. When you’re in so much pain that you could rip your own face off, the last thing you care about is abusing painkillers to escape the fear. You just want to escape the pain, and let them do the job they were designed for.

Oh, it’s not easy. I’m constantly on my guard, and I know it’s something I’m nowhere near over. Addiction is… well, it’s an addiction. It’s come back far too many times for me to ever say I’m over it.

They’re not perfect. Tramadol was much more effective, but I couldn’t be doing with the apathy and constant nausea. So I still have pain, it just becomes easier to ignore. That’s why opiates are so perfect. They don’t remove the pain, just stop you caring.

Like depression.

One day, perhaps this will stop happening. I’ll stop losing it, and life can run more smoothly.

 

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.

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.

When the past gives me no comfort

Despite my attempts at being entirely honest and bare in this blog, I do hold back. I assume everybody does, to some extent, even in their most secret of diaries. You see, twenty seven years of life is a lot to fit into just over a year’s worth of writing.

At first, I thought running out of things to say and confessions to admit would happen quite quickly. After all, I haven’t lived for that long; most still seem to consider me a child, barely out of my teens. It seems that even after you grow up and become an adult, there will always be somebody older ready to condescend your problems by mentioning how much more experienced they are. However, thousands of words later, I’m beginning to realise I can’t possibly tell my story in such a short time and, if anything, I’m only just admitting to the tip of the iceberg.

Something I’ve learned about writing such a personal blog – which involves sensitive subjects – is that I have to be feeling in the right frame of mind to speak about certain things. Sometimes I have to be angry; I write best about self-harm when I’m furious. Others, I have to be bordering on falling back into the depression pit. Some things… I am never in the right frame of mind.

 

Like tonight. I would much rather curl up in a ball on my bed and smoke dope and watch E.R until the sun comes up, than write about all the anxiety which has been plaguing me. I’d much prefer distracting myself with pointless games than admitting to finding it really fucking hard not starving myself every time I try to lose just a little weight.  And I’m forcing myself to write because I know that if I don’t, I’ll keep doing it. If I don’t have to hold myself accountable, then what’s the harm in letting myself cut a few hundred calories a day, until I’m only eating half an apple and two carrot sticks? At least then less people would judge me. I wouldn’t have to worry about not being taken seriously anymore, because when I was thin… I felt better. I just felt better. More confident. People listened to me more. I wasn’t just a fat loser with a walking stick and too many piercings.

I’m tired, but I don’t want to sleep. I also don’t want to talk about the voices.

They’re not voices; not really. They’re more like obtrusive thoughts which feel like they come from a different brain. They barge in with suggestions and hints, and are impossible to shut up once they get going. Until a few years ago I believed they were entirely valid thoughts, and acted on them. After years of fucking up and putting myself in dangerous situations… I learned – through lots of self-therapy and even more medication – that they’re not my real thoughts. That’s all well and good, but it doesn’t mean I can ignore them. They shout. Loudly. Demand my attention. Grab onto my brain stem and refuse to let go.

I wish I could explain the things they say, but it’s difficult to put into words. It’s bitter and spiteful stuff; reminders of my failings and every single time I said something wrong. They’re the ones who say that everybody in a room is looking at me, and that everybody I know is just pretending to like me out of pity. When I’m holding the lit cigarette in my hand and feeling helpless, they’re the ones who are shouting at me to press it into my arm. They’re the ones who twisted everything; who convinced me that I had enemies in friends and that others were out to hurt me. They made it all sound so real, and they still do. I just know they’re not a part of me now. Not a healthy part anyway.

I don’t know what I’m trying to say here. That I’m tired and need sleep, probably.

“We can’t let her think we’re unintelligent, T”

My mother is still stressing out over the benefits situation. This morning found her surrounded by bank statements again; double, triple and quadruple checking dates just in case she’s made a mistake somewhere. The living room floor has become a holding pen for pieces of paper, pens and cups of cold tea as she tries to ensure every last little bit of money in her account can be explained. Pension credit. Money my father occasionally paid into her bank for work on the house. Gifts. Every last penny is being accounted for, and it’s driving me crazy.

I don’t know if she’d ever understand this, but they’re investigating me, not her. I’m doing my best to ignore all that’s happened and let it wash over me, but the constant stress of my mother’s obsessive perfectionism is ruining my attempts at coping. I want to slap the bank statements out of her hand and shout at her; tell her it’s my life on the line, not hers, and if I can try to deal with it then she should too. I know that’s a selfish attitude to have, but I wish I could make her see that she’s just winding herself up. The fraud officer… she doesn’t need all this information. I wish I could explain that, but my mother doesn’t hear me when she’s determined to prove some sort of private point to herself.

I had to type out a couple of cover letters earlier, to put in with the collected statements. My mother’s wittering and stressing and tutting… I made so many mistakes, and each time my mother pointed the errors out and said, “we can’t let her think we’re like the others who get accused. We’re intelligent”.

She reads the Daily Mail.

I haven’t felt able to think rationally all day. It’s 1am now, and I’ve been trying to write this post since early this afternoon, with little success. Every time I sit down to type, I get distracted. I get like this sometimes; I go from laid-back and lazy to almost-ADHD within a second, unable to stop my brain running away with itself. Today was one of those days, with a hefty dose of panic thrown in.

All day I’ve been on the edge of tears for no damn reason. I hate it when I get like this. I can remember standing at my teacher’s desk in primary school, being told off for something stupid, and bursting into tears. I felt so ashamed; no other kid reacted like that. I still do it whenever I feel threatened or backed into some sort of corner.

Before we even got to town, I was panicking and snapping at my mother. I didn’t mean to; I just had no control over my emotions. Again, I hate it when this happens… everything in my life is about control and knowing exactly where I am emotionally, and when I freak out it feels like I’m going to die. All the protection I build around myself gets stripped away by anxiety and I feel utterly exposed. Like the whole world knows I’m a big, fat failure.

It’s now 3am. I tried to sleep, but my bedroom is too warm and my mattress is at an odd angle since my mother flipped it over at the weekend. I keep thinking back to today/yesterday, and realising just how much anxiety still rules my life. It’s not just a one-off either; I freaked out at the weekend too, while S and I were in Liverpool. I was frustrated that everything was hurting, and walking was near-on impossible. I couldn’t keep pace with S and even though he tried to slow down for me, I still felt angry that I couldn’t walk normally. That I had to keep stopping and sitting down to give my hips and legs a rest. I felt like I was letting S down; he’d gone to the effort of taking me for a day out, yet I bitched and griped my way around the city.

I tried eating at the restaurant he took me to – a bistro we’d visited before – but even the Greek pizza tasted like disappointment. On the train home, I sat next to S while he chatted to an old man sitting opposite, feeling utterly miserable. I know I shouldn’t let the pain get to me, but sometimes it’s hard not to wish I could just be normal. Just for one day.

We got back to his landlord’s house and sat in the garden for a while, smoking and drinking coffee. We chatted a little, and I made a few jokes about my inability to cope. S seemed unusually introspective, and something inside me decided to take the BPD view on things. I asked if he was okay. S said yes. I asked again. I worried. I thought perhaps I’d ruined the whole day by being me. I said he looked sad; he said he was just tired. It took all my strength not to ask again, to avoid grabbing onto his arm and begging him not to leave me.

It’s now half past two in the afternoon. Managed to sleep, eventually, after going downstairs and stuffing myself with mango jelly. I’m quite proud of myself; I wanted chocolate cake, but forced myself to go for the low calorie option instead. For now, the binge cycle is somewhat under control.

Yesterday ended up being a total disaster. I was angry and defensive to begin with, and my mother commented on my paranoia; something I hate being brought up. I know I’m paranoid. I don’t need to be told. I tried to keep it together as we walked around town, but everyone seemed to be staring at me and getting in my way on purpose, and half way around the shops I realised I hadn’t taken my medication – which only caused me to panic more. Life without the cipralex and beta-blockers is unbearable, and it amazes me how quicky I can go from coping quite well, to a nervous wreck within hours of missing a dose. Especially without the beta-blockers; they slow my heart down and stop me going into the fight or flight response because of entirely ridiculous things.

I complained. Bitched. Moaned. I felt bad, but I couldn’t help it. My brain said one thing and my mouth said another. The pain in my ankle was frustrating me and every tiny little noise set me off. Our main shopping street isn’t particularly big, so it gets very crowded. Even though it was pouring with rain, the crowds were enough to make me feel entirely insecure and vulnerable, and my mother kept telling me off for being irrational, which didn’t help at all.

I’m sorry for this post. I know it’s mixed up and confused. I don’t even know what I was trying to say.

Sorting out statements and spending money

I’ve hardly slept for three days. The stress of the accusation, along with the horrible muggy weather, has left me unable to switch my mind off and relax. I’ve been sitting on top of my bed in my underwear, waiting for the sun to rise so I can go downstairs and make coffee, then falling asleep for a few hours in the morning. I’ve been trying so hard not to let everything get to me, but there’s always a little part of my brain whirring away, trying to make sense of it all.

I’ve wondered if whoever reported me reads my blog. After all, any number of people from a local forum could have the link now. In the past, I’ve been very outspoken when it comes to prejudice towards the disabled claiming benefits – many arguments have started because I’ve refused to let a judgemental idiot make innocent people feel small – and once, somebody posted that the DWP were watching what I wrote, and to be careful. Another member said that I was living off the state and taking the piss. It’s safe to say that the general tone of the forum was of bigotry and bitchiness (it’s the general tone of the town I live in, really) and so there’s a high chance that somebody from there is the one who reported me.

This is where I come unstuck. I don’t know these people from Adam; okay, I met S on the forum and I do have friends who I met on there, but mostly the members were just faceless strangers who had no connection to me other than geography. They only knew what I chose to tell them. They didn’t know me.

I know I can be forceful when I feel wronged. I’ve freaked out when somebody’s backed me into a corner and made some pretty unhinged posts in the past on there. But… I’m nobody to them. Why would they want to try and ruin my life just for kicks?

My mother and I went into the bank today to sort out the statements the fraud officer needs. I almost freaked out; my mother tried to explain to me what I had to say (I’m awful in these situations) and I couldn’t remember what she told me, and I was already panicking slightly over the weather’s ridiculous control over my naturally frizzy hair, so I almost lost it. I don’t know how she brought me back from it, but somehow I managed to explain – haltingly – that I’d been accused of benefit fraud and needed proof of my innocence. The assistant was amazing; he sorted out all my statements and sent off for the ones from my mother’s account, and also helped me send off for another bank card after my mother took mine for ‘safe keeping’.

Relief. Days of stress fell away, because I now know we’ve done all we can until the fraud officer receives the statements. Even my mother – who’s been freaking out constantly since last week – calmed down and we spent the rest of the afternoon spending too much money and, for once, not arguing. It’s her birthday, and I haven’t been able to get her a present so I offered to pay for something she wanted from town. She faffed and umm’d and ahh’d, and I didn’t end up getting her anything. I feel bad, because I never get her presents on time. Still she seemed pleased with the card I got her.

The relief of finally feeling everything may work out okay pushed me into a spending spree. I hadn’t planned on spending much money today but ended up spending nearly £100 on clothes, make-up and presents for S; he’s thirty in a couple of weeks and I think he deserve spoiling this year after helping me through so much.

Z is going to bleach and dye the orange bits in my hair tomorrow, using Directions in Cerise, and I’m going to henna her hair. I’m glad we’re spending time together again. Afterwards I’m meeting S at the pub and we’re going to get the train to Liverpool on Saturday to visit the Tate. He’s taking me for a meal afterwards.

Maybe things are going to be okay.

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.

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”