A letter to my consultant

Current medications:
Propranalol Hydrochloride (80mg daily) – for anxiety and panic attacks
Lansoprazole (30mg daily)
Etoricoxib (60mg daily) – for inflammation
Pregabalin (300mg daily) – for fibromyalgia
Duloxetine (90mg daily) for pain, depression and anxiety.
Dianette – contraception and treating polycystic ovary syndrome

Recent medications:
Cipralex – for depression and anxiety
Celebrex – for pain
Omeprazole
Prednisone (12 week course to treat chronic eczema)

Past surgeries:
Four wisdom teeth removed
Laparoscopy (to investigate painful periods and bleeding) (2007). Laser ablation done at the same time to treat inflammation in cervix.
Cholecystectomy (2008)

Current diagnoses:
Synovitis in left ankle and inflammation of tendon at side of foot (originally misdiagnosed as achilles tendonitis 18 months ago), diagnosed approx. 6 months ago.
Pompholyx eczema/dyshidrotic dermatitis (diagnosed in 2012)
Polycystic ovary syndrome (diagnosed in 2001)
Fibromyalgia (diagnosed in 2006)
Irritable bowel syndrome (diagnosed in 2002-ish, originally treated with Mebeverine but currently under no treatment due to side-effects)
Depression and anxiety (first diagnosed at the age of thirteen) and Borderline Personality Disorder.

Current symptoms:
Pain and stiffness in fingers, knees, upper neck/base of skull, hips, feet/toes, lower back and wrists. Fingers, knees and toes most affected, although neck is becoming much worse. Pain and stiffness much worse in morning/after sitting still, and takes at least 2-3 hours after waking to begin loosening. Gentle movements seem to help the pain in most joints.
Unable to bear weight on heels for 2-3 hours after inactivity.
Swelling in fingers, toes, ankles and knees after waking/inactivity, especially in joints closest to nails in fingers and toes.
Clumsiness, especially in morning. Unable to grip items with confidence, especially pens and cups.
Fingers and toes have become misshapen over the past 18 months.
Weight loss. This is a particular concern for me as I haven’t dieted, although my appetite has decreased dramatically, again over the past 18 months. Since September 2012 I have lost almost three stones in weight, which is very unlike me as I have always struggled with keeping my weight down and I love food.
Recurring cold sores.
Itchy eyes and very dry mouth, which seems unconnected to medications.
Lack of temperature control. I have suffered from this for a number of years, but only at night. Recently it has become an issue throughout the day also, leaving me either far too cold, or far too warm. Fingers and toes always feel painfully cold regardless of weather or environment.
IBS has become much worse in the past 18 months, with constant diarrhea, cramps and loss of bowel control.

I have been referred to orthopedics, physiotherapy, rheumatology at SDGH, and to the local mental health team all regarding my symptoms. Because the pain and swelling in my left ankle was misdiagnosed as achilles tendonitis, they have only concentrated on that area of my body, and not taken the whole range of symptoms into account, which I feel are connected somehow as all my symptoms either appeared or became worse around the same time.
Emotionally, this has had a huge impact on me, and my life. I am no longer able to live independently as I need somebody around to ensure I have help with basic tasks (like cooking, taking a shower, and walking), as co-ordination and balance are something I struggle with a lot now. I am no longer able to go outside on my own in case I fall or am unable to bear weight on my heels. As a result I am now almost entirely housebound and even though I have bought a walking stick (after physiotherapy claimed I didn’t need help with walking), this only causes pain in my hips and neck as I try to balance with it.
I feel that if I could at least have a name for what is happening to me, I would cope a lot better, and possibly find a treatment which may help. Currently, I have lost all hope of ever leading a normal life, of being able to work. My hobbies all involve movement (walking, sewing, knitting, photography) and I am no longer able to do these things, and the rapidly increasing pain in my joints leave me unable to do the most basic tasks such as hold a pencil (I am also a writer) or comfortably type on a keyboard without wrist pain.

Last stop: this town

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

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

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

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

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

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

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

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

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

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

Has the anxiety and depression become worse?

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

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

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

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

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

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

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

I have freedom.

You don’t know how amazing that feels.

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.

Fingers crossed

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

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

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

Have you got your phone?

Have you taken your medication?

Have you got your stick?

Do you have a cardigan?

Will those shoes be comfortable?

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

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

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

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

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

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

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

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

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

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

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

Fingers crossed.

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.

 

Another appointment

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

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

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

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

Depression – why opening the curtains can cause more suffering, and other advice

I originally planned to reblog this post, but after typing out a long response, WordPress decided to keep my reblog in a never-ending publishing state, then eventually wiped the entire post.

Picture this. You’re trapped beneath a safety-blanket of duvets and pillows. The room is dark and silent. All you hear is your breathing; and sometimes you’re not quite sure if you’re really alive. It feels like you’re wrapped in a big, dark spider web; you know something bad is coming, but you don’t even want to struggle or escape. Days and nights pass in a blur of half-sleep and daydreams. Time ceases to mean anything. You can’t remember when you last brushed your teeth; and it doesn’t matter. There’s no reason to.

Suddenly, somebody comes stomping in, full of cheeriness and attempts to gee you up. They flounce over to the curtains and fling them open, pulling the nice, safe duvet from you and exposing you to the harsh, painful light. Your eyes sting. You haven’t seen real daylight in a while. You feel cold and naked; the act of stripping away a blanket is, to you, a cruel and unusual punishment. The whole world can see you now, and you’re scared.  Tired, anxious, weary and scared. You just want to be left alone.

This is why pointing out lovely weather is annoying and pointless.

Depression is a cruel illness. It strips you of your ability to care or relate to anything around you. It fills your mind with emptiness – a saying I never understood until I experienced chronic depression myself – and it’s all you can do to blink without giving up.

My mother has a habit of trying to force me outside, into the garden. When she thinks I’ve spent long enough hiding in my bedroom, she’ll waltz in (usually while I’m asleep), throw the curtains wide with as much clattering and muttering as possible, and proclaim that, “you’d feel much better if you got some sunshine!”.

I don’t doubt that weather has a huge impact on depression. I certainly feel much less able to cope in the winter; making excuses about the weather being too bad to leave the house or see friends. However, depression is a very complex illness, and you wouldn’t expect a bit of sun to magically fix a broken arm. It won’t cure depression either.

There is one aspect of depression I have never been able to manipulate or control via medication; the urge to shut myself away from the world. Friendships have fallen by the wayside because there’s only so  many times you can refuse an invitation before they stop asking. Being shut away is a natural response to being depressed; withdrawing from everything and everyone can sometimes feel like the only way to save yourself. Retreat to a place you feel comfortable and secure.

As well-meaning as it may be to try to force a depressive out of their comfort zone in an attempt to cure them, what you’re really doing is tearing the safety blanket away from a very vulnerable person. You may call it tough love, but to the person you’re trying to help, you’re being cruel and unreasonable. They already feel low enough without feeling their loved ones are turning against them as well.

Depression lies. When a friend offers you advice on ways to cope, sometimes the depressed brain will twist the words to sound like an accusation; particularly in cases of borderline personality disorder. I’ve been told that bipolar can feel the same. This imagined accusation sticks with the depressed person and, over time, morphs into a huge monster they can’t possibly hope to tackle.

Going outside has long been a big problem of mine. In the past four years (give or take a year) I’ve gone from somebody who goes on regular long walks and trips to town, to an almost-recluse, travelling by taxi so I don’t have to deal with the public and wearing nondescript clothes so as not to draw attention to myself. Part of  that is due to living with chronic pain, but I know depression is at the root of my reluctance to be seen in public.

You see, I worry that everybody knows my secret. That they can somehow tell from my face I’m “one of those crazy people”. I’ve sat in taxis, listening to the driver crack jokes about our local psychiatric unit, and prayed he wouldn’t look me in the eye and realise I’m totally incapable of existing without daily medication.

I accept that trying to help somebody with depression is like fighting a losing battle. The nature of depression is that it convinces the sufferer that getting well isn’t an option. The concept of recovery doesn’t even exist; depression hides it from you.

This is why sometimes the sufferer lashes out either verbally or physically when you try to help them. It’s why they may turn their back on you and not contact you for six months when you give out a few well-meaning hints. It’s not that they don’t appreciate the advice or care about you; it’s that they’re unable to feel those emotions properly. Depression has dampened everything down, placing the depressive in a near-soundproof room. They may be able to hear you, but their lack of reaction isn’t because they’re being spiteful and ignoring you; it’s due to depression smothering them with apathy.

It’s natural to want to help those who are suffering, and mental illnesses are no different. However, unless you’re a doctor you wouldn’t try to remove a tumour; in the same sense, unless you really know what you’re talking about, offering advice to somebody entrenched in misery probably won’t work.

I’m not saying to abandon those who have depression. Far from it; there are other ways to help than mentioning medications and therapies you’ve heard about.

So, how do you help someone with depression? I don’t have the answers to that. Everyone is different, and depression is a wide-ranging illness often encompassing other diagnoses such as psychosis, paranoia, anxiety disorder, BPD, PTSD and bipolar. What works for one person might not work for another. However, along with not  wantonly opening curtains, there are some things which might help.

  • The urge to drag a depressive out of bed is probably huge. However, it’s rarely the answer. When somebody retreats it’s through a need to be alone;  whether rational or not. In the depths of a depressive episode, you shrink into yourself and ignore phone calls. Emails go unanswered. Often, the sheer stress of having to communicate wears the sufferer down so much that they retreat entirely. Obviously if you’re concerned for their safety this advice doesn’t apply; but as long as they’re not hurting themselves… sometimes they just need to get through it on their own. Keep an eye on them; don’t let them be entirely alone, but don’t pressure them either. It can be a long process to climb out of the hole.
  • It’s hard to help someone when they throw accusations in your face. Paranoia often tags along with depression, and it’s very easy to become convinced that those trying to help you are actually out to damage you somehow. My personal experience of it is that it’s almost a form of psychosis; suddenly everything and everyone are against you, and even the people who claim to love you seem to be trying to ruin everything. It’s not something you can just get control over. It’s easy to imagine enemies everywhere when you feel entirely stripped bare.
  • I shouldn’t have to say this, but having depression doesn’t make you stupid or lazy. Sadly, these views still exist. Telling somebody to “just get out of bed and join the real world” isn’t the answer; it just serves to  make the sufferer feel even less of a person than they already do. Ask someone experiencing a depressive episode if they feel like a valuable member of society; they don’t. They’re at the lowest point it’s possible to reach, and suggesting in a roundabout  way that they’re taking up space and being lazy isn’t what we need to hear.
  • On a similar note, saying “my auntie was depressed for a week and she did more exercise and it went away” doesn’t help. It’s condescending and patronising. We know our illness; we live with it every day.
  • Telling somebody on anti-depressants that you don’t believe they’re safe or work properly will get you nowhere. Those with depression need support every step of the way, not putting down for their choices. Often, deciding to take medication is the last straw of a very painful life. It can be incredibly difficult to get up enough courage to go to the doctor and explain your failings so you can be given happy pills. If they work for somebody, what’s the problem?
  • You don’t know how they feel. Even if you have depression yourself, you can’t see or feel their exact emotions; or lack of. When  you’re trapped in the depression bubble, nobody has ever felt as wretched as you do. That feeling isn’t from an excess of ego; you really do feel like nobody could ever withstand the pain and emptiness. Tell them if you empathise or relate – communicating with other sufferers can help enormously – but don’t try to convince them you know how terrible everything is.
  • Invite your depressed friends and family to parties, but don’t be surprised or disappointed if they decline. It’s not because they don’t want to see you; it’s because they don’t want to see anybody. Telling them they’d “feel better if they had a few drinks” may be well-meant, but it won’t help. They won’t feel better. They’re sick, and sickness can’t be cured by a bit of fun. Let them know you’d like them to be there but that there’s no pressure. Pressure to socialise is a very painful part of depression.
  • Don’t tell them they look tired. Seriously. Nobody needs to hear that.

In which my faith in the NHS is restored

I’ve just returned from an appointment with my GP. I’ve been putting it off for a month, knowing I need to speak to him about the referral and diagnosis from Dr. B and the pain of the tendonitis (it’s much, much worse; physio have given me shoe supports and it looks like it may never heal properly because it’s been inflamed and damaged for so long), along with the continued eczema saga. I just hate going to my GP. He’s lovely – a really good, kind doctor – but I feel awful for frequenting his office so often. I sometimes worry I’m making a career out of hassling the NHS for help.

In the waiting room, I forgot entirely what I wanted to say. I sat with my mother, wishing I’d done what she always advises and written everything down. My memory is terrible at the moment, what with the combination of broken sleep, pain, strong dope and general apathy. I supppose I just react badly to advice; I have no idea why. Is that a BPD thing?

The good thing about my GP is that he makes me feel at ease; a rarity when it comes to doctors. I’m naturally wary of anybody in authority (having been let down so many times) that I usually panic and keep my mouth shut throughout the appointment, agreeing with everything the doctors say. I managed to explain that the tendonitis and eczema have been keeping me awake and affecting everyday life – I have to walk with a stick pretty much all the time now – and he nodded as though he actually understood what I was saying. Do you have any idea how rare that is for me? Usually doctors just sigh and tell me that pain can be managed.

He let me read the letter Dr. B sent after my appointment. Again, I was taken seriously; I don’t know why the tables have turned, but I’m not going to question it. After years of being passed up, it finally feels like my voice is being heard. It’s a wonderful feeling.

Dr. B recommended I be put on Lyrica for the nerve pain from both fibro and arthritis. I knew there was a chance I’d get it, but it’s so rarely given in the UK for pain so I knew it’d be a 50/50 chance. It’s also expensive, and we all know how wary doctors are of giving expensive drugs out to patients. I’ve been given so many cheap, generic drugs; and I don’t care what anybody says, they are different.

I’m starting out on 200mg a day. I’ve also been given Celebrex again and a different steroid for the eczema. I saw a dermatologist on Tuesday, and they’ve put me on a high dose of antibiotics to try and control the constant infections from the broken skin. In all, I’m taking eleven pills a day now.

In all, I’m happy with this. Nobody likes swallowing handfuls of pills, but I have hopes for Lyrica, and as long as the Celebrex doesn’t give me a stomach ulcer again, I’m quite willing to stay on it, if it helps the pain. There’s only so much pain one person can take.

So, perhaps things are looking up.

Accept

Often when I talk about myself, I feel eerily detatched from the situations and experiences I’m describing. I used to think it was similar to watching a movie; I was the lead star, but the narrator was somebody else entirely and the scripts never quite matched up. Now I realise it feels more like a form of denial – if I don’t accept something could be the truth, it can’t hurt me – and I’m beginning to think it’s not doing me any good to be so removed from myself.

All my life, I have called myself a liar. Sometimes with good reason – I lied with abundance in my teens to try to fit in – but often there’s no lies being told, other than the ones I tell myself to stay safe and ignorant. Denial has long been a part of my life; so long that it’s a natural emotion for me, one which never used to carry weight or worry me but which now makes me wonder if this dissociation could be the reason why I find it so difficult to accept things in life and move on.

When speaking to doctors and counsellors about my eating disorders in the past, I have often sat in the chair and wondered if I’m not exaggerating to get attention. I used to convince myself that my binge/purge cycle wasn’t really bulimia, and that starving myself had nothing to do with anorexia. I could use the words with ease to describe my eating habits, but there would always be a part of me shouting in the background, accusing myself of lying. I thought if I only stuck my fingers down my throat a few times a week, or didn’t completely empty my stomach, it wasn’t bulimia. It was just a bad habit, like smoking. Certainly not a mental health problem. It was always he same with self-harm; other people self-mutilated, I simply made half-arsed scratches and scrapes to make myself more miserable.

It’s difficult to explain how I could think that my habit of burning my arms and legs with heated-up bits of metal, scissors, hair clips and cigarettes could just be a way of depressing myself so I could be the morbid, cool, damaged teenage girl everyone secretly admires. Above everything else, I’ve never sought attention; I dislike it intensely, especially when it applies to the crazier side of me. I just want to be left alone, not put in the spotlight.

The point of all this navel-gazing is I’ve realised that I’m nowhere near being able to accept I have arthritis. It’s been over a week since my diagnosis, and although it’s probably normal to be in some sort of denial and that alone certainly wouldn’t be cause for concern, what worries me is that little voice inside my head, telling me I’m making it all up. That I’ve misunderstood Dr B, or invented it all as a reason for the pain. It’s ridiculous, really; I have proof from the referral letter, and I’m sure my GP will tell me the same things when I see him in a couple of weeks. I have a bruise in the crook of my arm from the blood test needle.

I don’t know what the problem is. It’s not like it’s a death sentence, after all. Yes, I will be in pain for the rest of my life – barring any medical miracles – but did I really expect anything different?

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.