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.

 

There and back again

During my brief* flirtation with cognitive  behavioural therapy, I found my first stumbling block to be the advice I was given to follow when I’m having a panic attack:

“Remember, it won’t kill you“.

Really? Because that’s not how I felt last night.

Terrified Woman Screaming

Images.com/CORBIS

Of course, it all worked out fine. It always does. This is the frustration; I know nothing terrible is likely to happen, but still I obsess and panic until I can’t see straight. Throughout my life this has happened hundreds if not thousands of times, and while bad stuff undoubtedly does happen… has the world ended yet? No.

I’m sick of not being able to make sense of myself.

Talking of sick, the Tramadol made me vomit. Penance, I guess.

 

*one session. I’m amazed I lasted that long.

So why don’t you slide

Earlier, S asked if I fancied a takeaway – curry from our favourite restaurant – and I agreed. Later he went out with a friend to buy some tools. They’re working on the basement beneath our flat, as technically that’s included in the rent. It’s currently filled with the last owner’s belongings; stacks and stacks of paintings, canvas, frames, lamps, chairs, books… Bob was a hoarder, and a painter. His work’s pretty good actually. Now he’s dead and his wife is in a nursing home (she went downhill very rapidly when he died), somebody has to clear it all. The basement is pretty big, taking up most of the floor space of the house, so it’s a mammoth task.

Anyway, while they were out I got a call from S. He asked me if I wanted to go to the restaurant with his mates instead of getting a takeaway.

Did I do the right thing when I said, “it’s okay, I’m not up to it. You can go along anyway”?

I wasn’t lying. I’m truly not up to it. I tried going for a short walk earlier, and by the time I returned, I was struggling to breathe and sweating like crazy. It’s been so long since I’ve had ‘proper’ exercise. That walk used to take me five minutes. Today, it took thirty.

Straight away S’s tone changed; the first time I’ve ever really heard it do so. He said, “oh. Okay. But we were going to have a takeaway.”

I shrugged him off, “it’s fine, I’m really, really not up to it. We can do it another time”.

He agreed, but… he didn’t sound happy. It’s only when I ended the call that I began to feel that familiar twinge of panic.

Image

Oh god. Oh god oh god oh god you fucking idiot oh god oh god.

I have never once done something (to my knowledge, anyway) to make S angry or disappointed. Unlike my relationship with O, I’ve managed to keep my irrational emotions in check; at least until I’m alone. I’m so determined not to fuck this up. I know it’s classic BPD to say, “oh, I love him so much, he’s my everything, I want to be with him forever” but all that’s got me in the past is a string of disastrous relationships and far too much bitterness. I almost have my head around that now, and the medication certainly helps me keep the more extreme aspects of my behavior in check. So while I know that these feeling might be BPD tricking me and that mental illness has a habit of making me cling to somebody like fuck… I want to believe this is real. I’m pretty sure I know, deep down, I love S with all my heart; how could I not? He’s the only man who has never condescended me. Who has never given me reason to suspect him of wrongdoing. The only man who I’ve felt comfortable enough with to let the mask slip.

I know I love him.

And now I’m scared.

scared-woman

So what did I do? I went straight for the Tramadol.

I’m now sitting at the kitchen table, trying and failing to calm myself with a joint. The urge to crawl into bed and hide under the duvet is overwhelming.

There is a light that never goes out

When I lived with my mother, there were often times when the only source of entertainment was to write. There are only so many cheap horror films someone can watch before they all drift into one, and only so many charity shop books you can buy before realising you’ve read pretty much every regularly-donated text. Back then, my days were entirely upside-down; sleep during the day, and lie in bed at night, typing away. It’s because of this – the ease of settling down to write in the past because the nights were impossibly long – that I’m now finding it difficult to balance my everyday life and the virtual world of my blog.

On the whole, my life isn’t much busier. Since moving in with S, I haven’t taken up any time consuming hobbies, and days rarely get so exciting that I fall into bed, exhausted. In fact much is the same; just with added domestic duties and a slightly better sense of night and day. I just find it difficult to juggle both living in a “normal” situation, and writing.

writing-tipsproblogger.net

Now, after months of half-hearted posts and putting off the important stuff, I’m stuck in a situation where I have so much to write about that it has become an impossible task. I bypassed the guilt long ago – I’ve been looking after myself a little, for once – but now… I’ve somehow got to squash it all into one post because putting it off is only making the problem worse, and I know that in the long run writing about all this is good for me.

Not only that, but I somehow have to try and make some sense, which isn’t the easiest of tasks on 200mg of Tramadol. I appreciate this post may be a little… disjointed. Trust me, it’s nothing compared to how my mind currently feels.

When I posted the Letter To My Consultant a few days ago,  I had actually already seen him the Monday before. My mother and I travelled 25 miles by taxi to meet with the specialist who had agreed to give me a second opinion. I had expected to fight to to be taken seriously – again – but I can honestly say that he was never anything less than courteous, and I left the appointment feeling buoyed up by the simple fact of just being listened to. It’s all I needed. Someone to sit, listen, and offer advice. Once, I thought that the NHS was built around trying to help patients, but over the past few years my faith in it had slipped to the point where I didn’t even see a reason to have an NHS if they can’t achieve the most simple tasks.

Now, some faith has been restored. And all it took was for somebody to shut up for five minutes and actually listen to me.

It should never have been this hard.

Lot 40 - Alison Englefield Headings -Paranoia

I don’t yet have a diagnosis, but that no longer matters to me so much. The promise to try and control the pain is enough for now, and although Tramadol probably isn’t the smartest option for someone who fought addiction for so many years, it’s one which works, and while I’ve certainly been craving the pills, I haven’t abused them, nor do I have the real urge to. They’re important, you see. The only thing I needed to truly escape from was the physical pain, and Tramadol goes some way towards making it more bearable.

Also, S isn’t stupid. He knows of my addictions, and he knows it’s something which haunts me every day. In the past, nobody’s truly tried to take control over it, but S simply isn’t the sort of man who would let me abuse painkillers. Now we live together, it’s something I can’t really hide – the tiny pinprick pupils and staring into space are a dead giveaway – and although I know I’ll always struggle with the urge, I suspect S will never go easy on me if he finds I’ve been abusing them. I wouldn’t want him to go easy.

The consultant said that if Tramadol doesn’t work, the next step is morphine patches. Again, he listened.

So I don’t have a diagnosis, but there are a couple of conditions which are being bandied around. Rheumatoid arthritis. Psioratic arthritis. Psioratic seems more likely, based on where the pain in my fingers is and the nail loss I’ve been experiencing. Rather than just saying “well, it’s something, but we don’t know what” – which is what I’ve been hearing for years now – my consultant explained that while they may never be able to fully diagnose me because rheumatic conditions can be so complicated, they will “do their best“. In this case, that means an MRI scan, ultrasounds on my hands and feet, referral to a pain clinic, and my first full examination since I started on the journey to find out what the hell is wrong with my body. I have begged for these tests so often in the past that I assumed I would have to do the same at this appointment, but I didn’t even have to ask. For the first time, I’m being physically tested. My first set of bloods have been done. They even did a urine sample, which my local hospital has never bothered with.

urine specimen

 

I came away from the appointment knowing a few things; that whatever it is will “most likely be lifelong”, that I will “probably always need pain relief”, and that there are doctors out there who still do their jobs properly.

I’m okay with it being lifelong. I feel like I’ve lived a lifetime of it already, so a few more decades can’t be much harder.

Maybe now I can settle. Enjoy living here. I’ve lived with S for six months, and so much has been ruined by my health. Maybe now… I can feel okay.

And so, to hospital

I hate hospitals.

Really, really hate them.

Since childhood, I’ve been paraded around them for various reasons; hooked up to so many machines I hear the beep in my dreams. I’ve been sick on so many hospital floors, and each and every single hospital visit – be it a planned appointment or a trip to A&E – has left me a nervous wreck.

I’m not ashamed to admit this: I just can’t cope with it. The smell. The horrible lights. The feeling of vulnerability and the worry you’ll never sleep properly again. The strange faces and unpredictable noises… and the memories of the times I’ve been really, really ill. Vomiting up black stuff all over the polished A&E floor, tripping on morphine and hooked up to every piece of machinery in the world. Happily floating on a cloud of prescribed IV opiates, not giving the slightest damn about anything but going to sleep and not waking up again.

So yes.

I really hate hospitals.

hanging-iv-bag

But I also hate being sick. Admitting to a phobia of vomiting sounds weak somehow; it’s hardly the worst thing to happen to a person, but it utterly terrifies me. I suspect it stems from years of bulimia; controlled vomiting is entirely different to actual sickness, and it’s the lack of control I can’t cope with. Vomiting for days on end and being unable to take my meds, wash, dress myself, eat, drink, or even sleep in the same bed as S… it all took its toll, and I ended up in A&E this morning, wired up to a drip and covered in heart monitor pads.

I admit, it wasn’t the plan.

I had an appointment with my GP this morning – to check up on my medications, which need to be raised or changed, how the pain is going… I didn’t make it, because I was busy concentrating on not vomiting in the taxi on the way to hospital.

If you’ve never been scared of being sick, you can’t imagine just how terrifying it is. Every movement, every sound, every thought even… if you feel nauseous, anything can and will set you off, and it’s utterly horrible when it happens. I’ve never vomited as an adult and not had a panic attack during. It’s not a pretty situation.

So I lay there. Sat up. Lay down again. Went to the toilet a million times. Couldn’t get comfy. The only time I’ve been on my own in A&E before is when I took an overdose – the latest in a line of them in my later teens – and my mother flat-out refused to accompany me. I resented her at the time, but I understand why now. I tried to quell the panic by browsing the internet on my phone, reading boring BBC news stories about absolutely nothing, trying to pretend everything’s okay.

18a_Cannula

Also, there was an added fear. One I haven’t mentioned to anyone, not even the doctor; I figured anything abnormal would show in the blood and heart tests. A few days ago I was in so much pain – agonising, screaming pain – that I caved, and begged everyone I know to find me some ‘proper’ painkillers. Z turned up with some 30mg co-codamol and, later, a strip of tramocet. Now, I’ve spoken about my little opiate problem before, but recently it’s been pretty dormant. I haven’t felt the need to self-medicate or block things out with tiny white pills.

However, fever doesn’t work well when you’re trying to be sensible. I accidentally took far too many painkillers; I don’t know how or why I did it, just that I took more than three times the recommended dose. It was in no way a suicide attempt, because I wasn’t truly aware of what I was doing. I just wanted the pain to stop, so I could finally get some sleep.

Then, days and nights of vomiting. Sweating; that horrible chemical-tinged sweat you get with opiates. Hallucinations and awful nightmares.

So that’s how I found myself curled up on a hard bed in A&E, trying to explain my ridiculous medical history, clutching an emesis basin and hating everything hospitals are.

I just can’t cope with them.

They scare me.

 

____________________

Unspoken

Sitting together and so far apart,
a thousand words unsaid and truths unspoken,
I never felt more alone, more out of place,
as I do tonight,
sitting by your side.

.
A bottle in my hand and a cigarette in yours,
I open my mouth but no words will form,
it all seems so trivial when I feel this broken,
when you’re sitting so close to me,
yet not here at all.

(c)

Writing about 2008 is more difficult than I ever imagined. On one hand, I almost feel uncomfortable writing about my past relationships now that I’ve been with S for eighteen months; I know he probably wouldn’t mind, but it must be weird for him to know I’m writing about my exes. On the other hand, it’s only now that I can see just how low I sunk; I knew I was falling apart but what I didn’t realise is that I’d totally cracked long before it got to this point. I can see that now. It’s difficult to think about. I acted in ways I’m not proud of and damaged my body god knows how much with handfuls of amitriptyline, tramadol, diazepam, co-codamol, small antidepressant overdoses to get me through the night in a dazed drug-fuelled stupor instead of having to deal with the reality of everything in my life going incredibly wrong. 

O and I… we stopped speaking one day. Conversation turned to bitter arguments and shouting matches. Slammed doors and a smashed laptop. Midnight chases down the street; it was always me doing the running. I just couldn’t face any of it. 

I remember sitting on his swivel office chair, gulping from a bottle of cheap peach schnapps and watching him smoke cigarette after cigarette, sitting on his bed and brooding. He threw me out that night. 

Of course, we got back together. We did a lot of getting back together. 

Alcohol and Tramadol

Washing ashes down the sink,
as though it would always be so easy
to wash away memories of you
and everything you meant to me.
Finding all the lovesick notes,
crumpled and faded under your bed
– at least, I imagine all the words I wrote
now mean as much to you as the words I said.

Words like “I love you”, I know mean little to you now
soulmates no longer, or that’s how it seems
all the carefully constructed speeches and promises
now lie strewn around us, torn apart at the seams,
and the one thing you never considered
was that I could be hurting as much as you
that I could be regretting every last moment
I could be hating myself for everything I put you through.

Hurting myself to forget the pain,
and pills to help me sleep at night
how could you believe that I knew it would happen;
and that this was something I thought was right?
Alcohol and Tramadol,
quick fixes which never seem to last
uneasy sleep and confused dreams,
and morning always comes too fast.

I slide further downwards and I don’t want to stop,
this is all I believe I ever deserved,
bittersweet lullabies and a twist in the tale
how can you say that I never cared?
Three weeks by the window,
three weeks on the floor,
21 days in the corner,
1260 minutes by the door.

Waiting impatiently for your call,
knowing I could mean so little to you
compared to my feelings, which never changed
despite everything we put each other through.
Despite it all, I still reach out,
I still never felt safer than I do by your side
I still think of you last thing at night
I still want you, and only you, to be mine.

Washing my hands but I’ll never come clean,
I’ll always be stained by all that I did
it was never as easy as you’d like to think
I always told you the truth, more than I hid.
Lovesick letters, secreted in books,
where you’ll never see my weakness for you
I kept the letters, the pictures, all the photographs
despite everything we put each other though.

(c) 2008

2008 was the year of poetry. Clichéd late-night ramblings fueled by painkillers and cheap bottles of red wine. Cigarette burns on the PVC bedroom window frame and knocking myself out with tranquilisers to hide from the inevitable breakdown. Things with O were coming to an end and his habit of breaking up with me then coaxing me back into bed – speaking of how he couldn’t live without me – confused everything to the point where I fell apart entirely. Poetry was the only way I could stay in reality. 

I cheated on him; slept with a 45 year old man. He cheated on me; throwing himself at a nineteen year old. Everything was messed up. We never recovered. 

I’m glad. 

I have S now.

If we get through this alive, I’ll meet you next week, same place, same time.

I stayed away from sharp things. Suffered from the codeine; entirely self-inflicted, and I’ll never be proud of shoveling bright red pills down my throat until the anxiety stops. Binged on Kits Kats and plain crisps at 3am. Lay awake in bed on Wednesday night, swimming in a sea of chemical highs and sweating out every last bit of water in my body, determined to sleep but flying too high from the codeine and dope.

I don’t know how it works elsewhere, but in the UK codeine can only be bought mixed with paracetamol; 500mg per pill. More than two tablets is therefore an overdose, and I usually need eight or so to give me enough chemical serenity… and I know my liver is paying for it. My addiction… once, I thought I’d be okay, that I wasn’t like other people who had to rely on drugs to get by in life. I convinced myself that I wasn’t addicted. I could stop any time.

 

Now, the lower back pain and constant diarrhoea is telling me otherwise. The headaches and nausea and bloating… it baffles me how I can be terrified for the health of my liver, but still continue to assault it with large doses of paracetamol.

I’m not a stupid woman. For all my failings, I know I’m pretty intelligent. However, I have the ability to create my own strange logic; to remove myself from situations and become convinced I’m okay and won’t damage myself so long as I take the occasional break. And on the whole, I’ve been doing well – since deciding to give up codeine, I’ve managed months at a time without even touching the stuff. Recently though, it’s been harder to resist. The world has been heaped on my shoulders without my permission – with the tendonitis and the fraud allegation – and I’ve retreated to the old habits in order to cope.

This is what relapse feels like.

I intend to make it as short as possible, because cutting myself and overdosing instead of coping with situations isn’t emotionally or physically healthy. Thinking about purging is a dangerous road to travel down; I made myself sick a few months ago, and don’t want to get back into that habit so soon – or at all – because I’ve been doing so well. It’s one of the few things I feel I can be proud of, and I’ve let myself down far too many times in the past. Over a decade of bulimia, and I’ve almost cracked it… I don’t want to go back there; don’t want the puffy face and swollen fingers and constant taste of bile in my throat.

 

Sixteen years, in fact. Sixteen long years since I first stuck my fingers down my throat in a tiny blue cubicle, skipping a lesson so I could throw up everything I’d eaten. Sixteen years since I first realised that fat = unhappy,  and I had to do everything in my power to prevent it.

Seventeen years since I first cut myself. Since my first overdose.

The codeine? That began when my relationship with O started falling apart, six years ago. I would stay awake at night, smoking out of my bedroom window and waiting for the chemicals to kick in and squash the rising panic dead. If O didn’t call, I’d take a handful, knowing it would take away all the anxiety and paranoia that he was cheating on me. When I found out he was cheating on me, I stepped it up; packets of amitriptyline, diazepam and co-codamol, taken as and when I needed to calm down. Days and nights spent tripping on Tramadol overdoses.

I’ve had a lot of abnormal liver function tests. Still, I punish my body so my mind can feel okay.

When you’re young, you think nothing truly awful can ever happen to you. When those bad things do happen, you still think you’re invincible and no amount of abuse could ever harm you. Even years later, when the dentist points out the eroded tooth enamel… it’s not real. Bulimia, self harm, pills… they’re all an addiction, and the brain plays cruel tricks so you don’t give the bad habits up.

 

This weekend, I plan to sit down with S and tell him what’s been going on. About all the stress and bad thoughts. I’ve told him a little about the rising anxiety, but brushed it off somewhat. I don’t like talking about these things in person, and I’m always afraid he’ll find it too much to deal with.

Most people do.

 

It’s not a relapse if you only do it once, right?

I’ve been trying to avoid it for three days, but I’m planning on taking two tramacet and going to bed. At Z’s barbecue she gave me a couple of pills; I was only joking when I hinted for some but I wasn’t about to pass up the opportunity to space out in a lovely chemical calm. Tramadol and I… we have a history. I was addicted. Just like the codeine.

I took some codeine a few days ago. 5 pills, then 5 more the night after. I haven’t touched it for a while, but the urge to blanket my fears with opiates was too strong.

I’ve been tired all day. Tired, sore and anxious. Panicking over nothing and trying to avoid food. Counting calories. Wasting time until I can sleep.

I’m not sad. Just so tired. So filled with thoughts. I want to rest for a while.

It’s not a relapse if you only do it once, right?

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.