So I’ll start a revolution from my bed

There is absolutely no point in forcing yourself to write a personal blog if you have more important things to worry about, and those worries have been the reason behind the long absence between posts. I have missed this blog dearly; although I knew it was helping me I didn’t realise quite how much until writer’s block hit and life got somewhat in the way. That’s not to say I haven’t had time – I’ve had plenty, more than I can begin to visualise – but that time has been taken up with difficult sleeping habits, medicine regimes, appointments, depression… I’ve experienced the full range of, well, everything recently.

Seronegative symmetrical psoriatic arthritis. Somehow, even the name sounds complicated.

Throughout the past couple of years I’ve often wondered how I would feel if it did all turn out to be real. For even though I’ve had very clear physical symptoms and (eventually) positive X-rays and an MRI, there has always been a small voice in my head saying, “but you lie. You always lie”. All the doctors who wouldn’t listen and the people who suggested it may just be overreaction on my  part… they were wrong, and I was right. It’s a strange feeling for somebody who isn’t used to being right.

 

wta3

Now feels like the right time to begin writing again. A month after my diagnosis, and I’m just about beginning to pull things together. There’s a lot to concentrate on – I’ve been put back on steroids (Prednisolone, this time) and have also been put on a course of Methotrexate, along with Fentanyl patches (which refuse to stick in this heatwave but otherwise they’ve been fantastic at dealing with the ankle pain) and codeine still if I need it. I have varying specialists dealing with my case, a nurse, and am also attending a pain clinic for physiotherapy, counselling and relaxation, as well as any medications/pain relief if needed. Everybody has been lovely, from the rheumatologist who diagnosed me to the occupational therapist I saw on Friday morning. The difference from simply changing hospitals has been enormous, and I’m so thankful to my GP for understanding why I no longer had any faith in our hospital. The time from first seeing the new rheumatology team to diagnosis was two months. My local hospital achieved nothing except further damage in over two whole years, all because they never scanned me.

I haven’t quite accepted the diagnosis yet; I suspect it’ll take while. Although I knew something was wrong and even though I considered inflammatory arthritis as a possibility for a long time, nothing quite feels real yet. However, I don’t feel the sense of hopelessness which has dogged me for months and months; a weight has definitely lifted, even if newer weights have been added at the same time.

I am trying not to look at the past year as a waste, but I must confess to feeling resentful; I spent a year unable to walk without extreme pain – and, over recent months, have been unable to walk at all and have spent my days indoors relying on crutches to get to the toilet) – and I do feel cheated. All it would have taken was an MRI. All they had to do was listen to my history. They didn’t though, and as a consequence I have lost a year of my life to pain.

It’s hard to know where to start rebuilding.

 

building-a-wall

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.

Strength in numbers: the Strong Person award.

Trigger warning: contains talk of suicide and self harm. 

You heard me right! You are not weak, you are strong. You are not a failure, you are a fighter! This goes out to all mentalists. And it’s a gift from me (The Quiet Borderline) to you all – Please spread the love. Mental health is not something to be sneered at and it deserves much more respect. Stop the stigmatising.

I was wondering how to begin writing a post today. The anxiety has passed but otherwise… things have gone a little squiffy. Somewhere along the line, I lost control and grabbed for the closest crutch; food. Or rather, as little food as possible.

After yet another restless night, interrupted by stomach grumbles and dreams of cake, I woke this morning to an award nomination from The Quiet Borderline. It seemed fitting. The above quote is from her blog, explaining the award she’s created; I’ve given my opinion on blog awards many times but I think this one could become something special.

1. Make sure to add in the above text and image (below) to spread the love and add how little or how much you want! 2. Name your diagnoses – Stand loud and proud! You can tell us a little about them also if you’d like. How you’re affected by these diagnoses and how you are fighting your way out of them. 3. Add a photo of yourself, or some abstract picture that represents you, anything you like! 4. Send this on to as many, yes, as many, people that you like. It can be five, ten, fifty.

2. Depression. Probably my most important diagnosis is clinical depression; a permanent feeling of doom with regular visits to a hideous abyss I can only describe as being as close to hell as it’s possible to be. I know that sounds like an exaggeration, but I know there are others reading this who understand all too well how it feels to be trapped under the dark duvet of depression. Since puberty I’ve struggled with suicidal thoughts and occasionally actions; my first overdose (antidepressants I’d been stashing away for weeks) landed me in hospital for two or three days, and the second involved cups of hideous charcoal water and having my blood cleaned after I woke up, still alive but with bright purple blotches all over my body where the combination of paracetamol and strong coffee had taken its toll on my liver. After trying a couple more times and failing – ending up either in hospital or missing the vein on my wrist entirely and bleeding all over the bathroom for half an hour, feeling like an absolute twat – I realised that suicide was never going to be the answer. I still struggle with the thoughts sometimes… they creep up and try to drag me under. I just don’t act on them anymore. Medication keeps me just about safe.

Depression: why it was never about sadness

Borderline Personality Disorder (BPD).  Eighteen months ago I had no answers for the way I often reacted to events; multiple psychiatrists and doctors had seen me in their offices over the years and tried to stick a label on my total inability to cope with, well, anything. To describe it all sounds ridiculous; hiding indoors in case somebody spots me (agoraphobia from a fear of being judged and laughed at) and panicking every time somebody says they’ll call me and are late. Banging my head against the wall because nothing makes sense. Because I’m so fragmented and messed up. Self-harming to cope with the anger inside me I could never let free; a quiet borderline, if you will.

What is borderline personality disorder?

Anxiety. Crippling, soul-destroying anxiety. Is that part of BPD? I don’t know. Everything melds together into one fucked-up disorder with no name. A combination of Cipralex and beta-blockers keeps me on a somewhat even keel. It feels like the fight or flight response in me is broken; I run away from the most ridiculous situations, freak out over next to nothing, and react to stress by hyperventilating and becoming convinced the whole world is against me. Watching me. Waiting for me to fall.

There are others. Bulimia. Anorexia in the past; I’m no longer anorexic but still restrict calories when I lose control over life. Major paranoia, but does that come under anxiety? The occasional psychotic episode.

3.

4. Passing this award on is difficult, because I’m sure there have been many nominations by now. If I repeat anybody, apologies; you greatly deserve the nomination regardless and don’t have to accept.

lalaemzo / Living with BPD / NZ Cate / atwistedfantasy / alwaysallegoric / buckwheatrisk / onxuncovered / Don’t Let Me Get Me / You Know You’re Borderline When… / makeupandmirazapine / Bats / Resilient Heart / notthinginmynoggin /  Diabetic Redemption / aasouthernbelle / Hello Sailor / mm172001 / mysterytopursue / Quit The Cure / roosiegoosie / Temper_Tantrum / Gypsy

Really, I could nominate a hundred more people and still not give everyone the respect their very honest blogs deserve. As time goes on, I may add more to the list; yes it’s a lot of links, but there are a lot of wonderful bloggers out there sharing their experiences and being brave enough to speak out.

You’re all awesome.

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.

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.

Things are going to slide, slide in all directions

1:25am, and I’m worrying.

In the morning I’ll be meeting Dr B, the consultant rheumatologist who diagnosed me with fibromyalgia in 2006. I haven’t seen him since the diagnosis – choosing to forgo the usual treatments – and to say I’m nervous would be an understatement. Dr B is a very straightforward man; brilliant at his job, but he takes no prisoners and rarely smiles, and the last time I was in his company, he poked and prodded me until I cried. It’s not an appealing prospect.

I’m wondering if I’ll have any sort of clue as to my future after tomorrow, or whether I’ll just be referred to yet another department. I’m glad neurology found nothing wrong, but I’m tired of seeing different doctors and repeating my symptoms for the hundredth time.

Even with medication, I’m stressing. I have a habit of being on my best behaviour in front of doctors; and that means not showing any pain or distress. I play my symptoms down, not wanting to make a fuss. I’m fully aware of it and I know it’s part of the reason why nobody can quite work out what’s going on with me, but seem unable to admit to any sort of weakness; physical or emotional.