RSS

Tag Archives: diagnosis

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

 
22 Comments

Posted by on July 21, 2013 in Every day life

 

Tags: , , , , , , , , , , , ,

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.

 
16 Comments

Posted by on March 22, 2013 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , , , , , , ,

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.

 
30 Comments

Posted by on August 20, 2012 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , , , ,

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.

 
75 Comments

Posted by on June 6, 2012 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

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?

 
10 Comments

Posted by on April 19, 2012 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

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.

 
33 Comments

Posted by on April 11, 2012 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

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.

 
33 Comments

Posted by on April 10, 2012 in Every day life

 

Tags: , , , , , , , , , , , ,

What is borderline personality disorder?

Out of everything I have experienced in life, one of the things I find most difficult to talk about with any real candour is my diagnosis of BPD, or Borderline Personality Disorder. There’s something about it which I can’t bring myself to explain in words; that feeling of fear and distrust which dogs every move. It’s not simple enough to just call it ‘anxiety’ or ‘worry’, because it goes far deeper than either of those things and I often find myself tongue-tied, unable to describe just now BPD affects me. As a result, very few people in real life know I have the diagnosis. I just can’t bring myself to tell them.

Earlier, I read a brilliant post called What Is Borderline Personality Disorder? on the site “You Know You’re Borderline When…”. Since my diagnosis, I’ve read everything I can get my hands on about BPD in the hope of finding some sort of understanding of my often ridiculous actions, and the post I just mentioned is easily the best article I have ever read on the subject.

One point the author, Jaen Wildfly, makes is particularly meaningful to me.

I guess the keywords here are: Unstable Self-Image

That still sounds a bit fancy. In essence, it means “I have no fucking idea who I am or what I want since my desires change from one minute to the next.”

I suspect one of the reasons why I can’t bring myself to admit to having BPD is because it all sounds a bit, well… self-absorbed. Nobody knows who they are, right? It’s not like we have the monopoly on wonky self-image. Try telling the average person on the street that you have an unstable self-image, and listen to them talk about how everyone doubts themselves; it’s impossible to get across just how much of an impact being impaired in identity can have on your life without sounding like an attention-seeker.

When I was diagnosed last year by a psychologist, I had a hard time explaining why the label of BPD – or rather, any label – was so important to me. Over the years I’ve been given many diagnoses – clinical depression, chronic anxiety, schizophrenia for a short while – and usually they’re as welcome as a kick in the teeth. Each label has changed me in some way and determined the path my life took, and most have resulted in disaster. However, I started to realise that my life has been governed by my total inablity to react rationally to imagined disasters, and without knowing the reasons why I act like that, how could I ever improve?

Jaen also uses the word ‘fragmented’, which to me is the perfect description of how it feels to live with BPD. Sometimes I wonder what I’d see if I could open myself up and look inside; whether everything would be shattered and broken. I wonder if there would be a visual clue as to what’s causing me to destroy every relationship I have.

To describe BPD properly, you have to grit your teeth and be prepared for others to judge you, for them to think you’re a cold, uncaring freak with a tendency to fly off the handle at the smallest provocation. BPD, like any other mental illness, is very unattractive when it makes itself known.

Regular readers will know that I haven’t quite destroyed every relationship; I’ve been with S for over a year now, and through some sort of divine intervention we’re yet to have a single argument. Not even a small one. This defies everything BPD is about, and I can only assume that the combination of cipralex and beta-blockers I take – along with the ten or so joints I smoke a day and the tendency to turn to opiate painkillers when things get too stressful – numb the fears which make me irrational and obsessive. It’s the fear which makes me angry, you see; the fear that I’ll lose somebody, or they’ll think less of me.

We are romantic junkies. Borderline behavior will increase with each new partner; thoughts of a perfectly passionate soul mate will drive us to do things that can be considered “impulsive.” But we are driven by a primal urge for this special someone to be our ultimate romantic love and savior. It is hard for us to look for realistic love when we crave this intensity. We are “in love” with being “in love” and will do stupid things to get our desires quenched. Usually, we end up disappointed because we don’t understand the transition from desire to love.

When I met my ex-fiance, O, the relationship was already doomed to fail although I didn’t come to realise that until many years later. Throughout past relationships, my behaviour had developed into a seething cluster of resentment, mistrust and paranoia which ruined everything I came into contact with, and my tendency to fall for men who would take advantage of me had given me an incredibly skewed view on love. I believed equally in the great love story and the cruelty of men, hoping for the first but inevitably finding the other.

During the relationship, I rarely saw my behaviour as unreasonable. To my mind, all the injustice of the world was constantly thrown upon my shoulders and O simply didn’t understand how much his words hurt me. Looking back, there’s no way he could have known, because very few people would react the way I did. Most wouldn’t slam doors or bury themselves in the corner of the room, banging their heads against the walls. Not everybody would smoke ten cigarettes in a row, lock themselves in the bathroom and punch themselves in the face, just because their boyfriend didn’t answer his phone.

Storming out of his house in the middle of the night and waking his parents became a common event; I’d wait at the end of the driveway until O came out and apologised. On an almost daily basis I would walk away from him over a small argument, stomping down the road with tears running down my face, first marching along then slowing down as I realised he might not follow me if I went too far. I always wanted him to follow me. I needed him to.

Like many BPD’ers, I’ve made a number of suicide attempts. I’ve barely mentioned them so far because the feelings behind the attempts are still quite raw, even years later. Also like many people with BPD, because I survived it’s assumed they were a cry for help or attention, and so the doctors who treated me in A&E for paracetamol and antidepressant overdoses didn’t take me seriously.

Each and every time, I wanted to die, and was disappointed when I hadn’t. The efforts of others to save my life were lost on me; I just wanted out. The last time I considered suicide, I found myself running out of the house in the middle of the night, into a storm. My mother and I had been arguing about the amount of control she has over my life, as usual, and I suddenly just couldn’t take it any more. For a few minutes, the idea of walking into the sea crossed my mind. I even set off along the embankment, planning on getting to the sea wall and letting the tide pull me away. The urge was addictive, and I couldn’t think of anything else but ending my life. The ability to see how my death would hurt others was lost to me, and I still don’t quite know why I went back home after two hours. I stopped being angry, I think.

I have never considered suicide when depressed; even thinking about it would be too much effort in that situation. However, anger and panic are what drive me to think such thoughts, to harm myself, to chain-smoke and take more pills than I should. Any type of fear sends me into a blind panic; I just don’t know how to deal with the emotions. Or any emotion, really.

 

 
58 Comments

Posted by on April 7, 2012 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , , , , , , , , ,

30 days of truth – day 10 – letting go of myself.

A letter to my twelve-year-old-self.

As you sit in your incense-scented bedroom, leaning against strategically-placed cushions on your bed and picking at the moon and stars duvet cover you begged for, consider this. Consider that one day, you will be twenty-six. You will be in that same room, typing these words on your laptop, surrounded by the things you collected during life; Guinness bottles, eye creams, cheap jewellery, a pink and white Laura Ashley bedspread marked by gel pens and cigarette burns. Empty pill packets and lighters. Crystals you once believed had healing power. You no longer believe, but will never throw them away.

You will type these words, thinking back to the Hanson posters you no longer own, the Sony Walkman which broke years ago, the candlesticks which never looked right on your window ledge. You will remember.

It all sounds so far away to you. Life for you is a slow-moving mash-up of books, poetry, the X-Files and listening to The Middle Of Nowhere over and over, until the tape starts to break. Fears you feel are school-related. The challenges you face are all-consuming, and you suspect you will never be this confused; that puberty will somehow save you from the feelings you keep inside. The diaries you write now… you will throw them away. They don’t have meaning to you, after all; so much of what you write is lies, made up to convince yourself that your life is more interesting than it is. So much of what you say is lies, woven from a need to fit in, to impress, to be somebody else. You will convince yourself, eventually, that these lies are nothing but the absolute truth, and that’s okay; years later, you will find out why you did this. It was never your fault.

A lot of things will turn out to be not your fault. However much you blame yourself, I wish you’d know this, so you wouldn’t punish yourself. It may seem strange writing like this; after all, I’m writing to myself, and until they invent time-travel, this is purely for the grown-up me. You and I are different people. We have the same genes, the same blood group, the same eyes. We are the same, but so different. As you grow older, you will learn so many lessons; most harsh and uncaring, but all useful. You need to bear these lessons to become who I am now. You need to remember that you change drastically, and that your life will be a series of learning curves. Change doesn’t come easily; you have to fight for it. As much as you don’t see it, you can, do, and will fight. You’re more able and stronger than you give yourself credit for.

The nightmares will always be there, but you will learn to bear them. You will even discover, one day, why you have them. It won’t be an easy discovery, and you’ll break before you mend, but you need to discover those things.

For you, now, school is the be-all and end-all. I remember all too well how it feels to even hear that word. ‘School’ – such an innocent word, yet I know how sick you feel when you hear or read it. I remember those stomach cramps and tears. I remember the utter terror. I want to be honest with you, so I’m afraid it doesn’t get easier. If I could go back and be you again, I would find my voice; because you do have one. I would stand up for myself, because the ability is there. You can’t see it now, and it saddens me that you can’t find a way out. If I could tell you one thing, it would be this; it was never as bad as you imagined it. You naturally punish yourself and assume you’re guilty. Years later, you will find out why, you will discover that it’s a fault in your brain, something you can’t help. When someone raises their voice, I know you believe it’s you they’re angry with. When something goes wrong, I know you automatically blame yourself. What happened at school will stay with you for a long time, well into your early twenties, but one day, the fear lessens. One day, the tangles and confusions begin to make sense. One day, you stop blaming everyone else, and, most importantly, you stop blaming yourself. You will see school for what it actually was; a place where you simply never fit in. Not through lack of trying, but because you tried too much. You were simply never going to be one of the popular kids, but remember this; popularity at your age may seem like everything, but really, it’s nothing. Most of the popular kids were just as insecure as you. They had troubles at home too. They struggled with work, even though you felt like the only one.

 

 

At the age of thirteen, in November, you will refuse to go to school. You will leave. The year before that will be a painful one; a long, hard road of misery and upset. You entered puberty much earlier than your peers, and so much of this is down to hormones, even though you won’t realise it at the time. Hormones and mental illness. In that year, you will leave childhood behind. You will become even more introverted, shying away from physical contact. You will push away your friends. I can’t tell you not to do this; without it, you wouldn’t be where I am now. I just wish you could understand how damaging it will be to you, and how easy it would have been to just reach out. One day, you will find yourself sitting in the headmaster’s office, having to explain the scars and cuts on your arms. You will make a vital mistake at this point; you will choose to confide in your two best friends. They won’t understand, and it will scare them. Eventually, you will lose these friends, but I can tell you now that it was the best thing in the situation. They weren’t emotionally mature enough to deal with their friend self-harming. The next mistake you will make it forgetting to hide the bloodstains on your shirt sleeves. The girls who sit opposite you in science will see it, and will pretend to scratch themselves with compasses in front of you. When you start the unexplained crying bouts in lessons, you will lie, you will make up a story to explain away the tears. I wish you hadn’t done this; everyone knew you were lying. In fact, everyone knew that most of what you said was a lie, all along. This is why they never believed you. When one of the popular girls asks you if you’re alright in the PE changing room, she wasn’t trying to be cruel, to taunt you. I wish you could see that, because I know that, at the time, you believed it was just another way of getting to you, rather than the rare kind gesture it actually was.

You always suspected you were different, didn’t you? Well, you are. Not a freak; not in the popular sense of the word. The truth is, you’re ill. The illness is in your head, and, contrary to what you may suspect, you’re not making it up to gain attention and status. You’re not inventing problems for yourself, regardless of what that voice in your head may tell you. Yes, you do make it worse for yourself at times, you do over-analyse situations and get yourself into emotional states you can’t control, but that doesn’t make you any less of a person.

Now, look at this photo.

I know that by posting this, I’m giving a lot away about myself; where I come from, where I went to school. I wanted to remain entirely anonymous on this blog, but perhaps honesty is more important sometimes. I know that, if you saw this photo, you would begin to sweat and shake. You would probably cry. Your heart would race, and you would have the urge to harm yourself in some way. I remember how it felt every time you heard the lyric “go to school” in that Sheryl Crow song, how you had to fast-forward past that bit. I promise that one day, it won’t hurt. I promise that one day you will be walking past the school, and feel nothing.

 

When you look in the mirror, you see somebody who will never be loved. You will never quite understand what exactly makes this fact; whether it’s the mass of curly, unruly, tangled ginger hair, or the rolls of fat which make sitting down so uncomfortable, or simply your face, which you never felt comfortable with. You were never one of the pretty girls. Your body shape meant you would never have delicate shoulders or slim hips. You know you will never be a tall, skinny blonde.

I chose to write to you when you were twelve years old because I know that’s when everything started. Not the bullying; that came earlier. The reactions and the overreactions though; that starts now, doesn’t it? It’s the age you realise just how little you have in common with your peers, the age when you start kicking back against the world in the only way you know how; by harming yourself, and, to an extent, harming those around you so nobody can get close enough to cause pain. The age where you become aware of yourself and your impact on the world. You’ve already been suffering from depression for a few years now; they call it juvenile depression, at least that’s what you were told. It sounded so trivial, didn’t it? ‘Juvenile’, as though it was childish. For a long time you didn’t believe that diagnosis. To you, it was all fantasy, all attention-seeking, it was all your fault.

My clearest memory of you is when you used to sneak out of the house in the early hours of the morning, just after dawn, to sit on the embankment near the water treatment plant down by the marshes. A short walk; but at the time, it felt like miles. Even in the middle of winter you would wear just a t-shirt and jeans, because the cold didn’t affect you the way it seemed to affect others. I suppose it was the extra weight you were carrying around; cold simply couldn’t penetrate your body. I remember you running down the slopes of the embankment, feeling the wind in your hair and on your face, running from everything and nothing, with nobody around to see you. It was the only time you felt free. Then, you would creep back into the house, flushed from the exercise and nervous about being caught. You left the door on the latch, so you could get back in; anybody could’ve walked into the house and it would’ve been all your fault. At the time, you simply didn’t care. You needed space, fresh air, solitude in the outdoors. You never did like being indoors for too long, and that hasn’t changed. You’re still prone to cabin fever.

Do you remember when the binge-eating started? I don’t; as much as I try, I can’t remember. I can only assume that because you started puberty early, it must have been around that time, as that’s when you started becoming aware of your body and, for the first time, was unhappy with what you saw. I can still remember the first time you realised you had body hair; the disgust you felt at discovering the soft, downy hair under your arms. Then came breasts, and the inevitable teasing because nobody else in school had them. After that came the first pale red spots in your underwear, followed by sudden cramps and what felt, at the time, like haemorrhaging. You didn’t tell anybody for a long time, you were too ashamed. Things are different now; the health problems you encountered over the years ensured that pretty much everybody ended up knowing every detail about your period. You even got to see your ovaries on a camera, which appealed to your sense of the grotesque (which we still share). But more about that later.

I remember your frustration when, at the age of five, you couldn’t eat what your friends ate. Being born with a severe lactose allergy felt like a curse. In primary school, you ate chocolate substitutes and endured gentle teasing for being different. It didn’t bother you much, but I think, deep down, it began rooting issues for you; food became a chore, rather than a pleasure. So when you were finally declared ‘cured’ at the age of seven, you indulged. I think any child would, but I know now that you have an incredibly addictive nature, and that food, for you, is the ultimate pleasure-giver. I know what it looks like down the side and underneath your bed; empty chocolate and sweet wrappers, whole multipacks of crisps secreted away, old yoghurt pots, bottles of Pepsi and milkshake. I know you feel ashamed by it, and that’s why you hide it, that’s why you can’t simply take those wrappers downstairs and put them in the bin, instead creating a mountain of past binges. I remember it all too well.

 

You haven’t yet been told by the blonde PE teacher that you’re fat. She hasn’t yet held up your skirt for the whole class to see, mocking your weight. It will happen soon, and when it does, I wish you would simply take it on the (double) chin and pass it off as a thoughtless comment, rather than let it torment you for years. I know I can’t change what happens to you, or your reactions to events, but if I could travel back and change one thing for you, it would be this. I wish I could tell you to laugh in her face or shout at her; anything but your real reaction of staring at your shoes on the hard gym floor, swallowing what little pride you had left and casting it down in the hope that the earth will open and let you fall; fall away from the comments and taunting, fall away from the word ‘fat’, so you never have to hear it. This, more than anything, broke you. I wish I could stop it, because I know just how much pain and misery it caused for years to come.

I also wish I could tell you not to listen when your sister (E) stands up from the dinner table at Christmas and announces she’s going to make herself sick because she’s eaten too much. I want to be able to crawl back through those years, hold you tight and block your ears against what she said. You took it to heart; you saw it as a cure for the fat which seems to destroy every part of your life. She didn’t mean it, and even if she did… it’s not the answer. Regardless of what you think, you won’t be one of the lucky ones who loses weight and stops.  You won’t be the one who gets away with no damage to your health. I know you feel invincible right now, but you’re not. Leaning over the toilet, running the taps on the sink to hide the noise of retching… it didn’t solve anything. It didn’t stop the bad feelings; it just magnified them. If you’d have known that, years later, you’d still be fighting the urge to vomit, would you still do it? If you knew how disgusted you’d end up feeling with yourself, yet unable to stop because it had become an addiction, the only crutch you could reliably lean on… would you find a better way of coping?

You wouldn’t, would you? Because you’re headstrong, stubborn, and desperate. In that sense, we’re still exactly the same.

You may be asking yourself why I’m writing this letter from the same bedroom you sit in right now. You may wonder if your worst fears have come true, and you’ve never managed to move on from your insulated, bubble-wrap life. I feel I should apologise at this point, because I let you down. I should have been a stronger adult, I should have gained control over my life instead of spending my late teens and twenties punishing myself and hiding from the world. I should have stayed awake instead of falling so easily into sleep as a method of coping, I should have lived my life for you.

When I began writing this, it was the result of a half-asleep talk I had with myself. Yes, I still do that. I’ve been cruel to myself lately; allowing myself to wallow in self-created misery and sinking back into the old ways of coping. Right now, I have an infected burn, just above my navel. I tried not to; I know it’s the wrong way of doing things and solves nothing, but sometimes the temptation is too difficult to avoid. I used a lighter to heat up a pair of nail scissors, and chose to scar myself there because, apart from S (my boyfriend), nobody will see it. Again, I let you down. I know that you don’t currently see any reason to stop harming yourself, but that feeling doesn’t last forever. Eventually, you will want to get better, you will want to kick that demon aside and find healthier ways of coping, but it’s so, so difficult. I can’t help but think that I’m too old for this behaviour now, but if it were easy to stop, I would’ve long ago.
That talk I had with myself… I started speaking to you. Just in my head; I’m not entirely crazy, at least I don’t think so. Perhaps I am; perhaps I’m so off my box that I don’t make any sense, perhaps I’m writing this from a padded cell somewhere and I’m just convincing myself I’m living this half-life I’m stuck in

.

When I spoke to you (obviously, you didn’t answer back, that would just be silly), I realised just how different we are, and I began to wonder how I would’ve felt if my twenty-something self could go back and tell you these things. It was supposed to be a short letter, but the more I thought and wrote, the more I realised that I owe you everything. I could turn this into a novel, and I suspect we still wouldn’t cover all the ground between us, but I want to try.

Why?

For my own peace of mind. For therapy. For all the ways I failed you.

 

You dream of romance; of being loved and loving somebody back. Only, you don’t speak of this desire because it seems ridiculous. Who would ever love you? A recluse with bad skin and bad social skills; how could anybody give up their time to be with you? How could anybody bear to touch you, when all you see in the mirror is an overweight, pale, galumphing teacher’s pet with frizzy ginger hair and bad teeth? Of course nobody could love you, you reason with yourself. And so, you swear – almost unconsciously – to never let anybody close enough.

If you protect yourself, you won’t get hurt. If you make sure nobody ever gets close to you, you will never have to feel that rejection, you’ll never have to relive the humiliation of the day a boy from school asked you out and stood you up. You’ll never have to face the laughter from others when they ask, incredulously, why you ever thought it was anything other than a joke on your behalf.

Yet, for all your attempts, boys and, later, men… they did love you. Or something like love.

It’s hard to imagine now, but you’ll lose your virginity much younger than some of your peers. You will find yourself in a council house at the age of fifteen, watching an older man move on top of you, and you will feel nothing. You will note the absence of pain. Afterwards, you will stand in front of the bathroom mirror, trying to look for a sign of maturity on your face, but all you will see is smudged eyeliner and a scared look staring back at you. You felt the condom break, you heard his muffled swearing as he threw it aside and carried on regardless. It doesn’t bother you as much as you thought it might; you don’t feel real.

As you travel to the women’s hospital at 11pm (way past your curfew, and in a city more than twenty miles away from home), you try to feel like an adult. You attempt to convince yourself that this is it; your childhood is over, and you’re a grown-up now. Yet, you still feel like a girl. A scared, unimpressed girl, more worried about the argument you’ll undoubtedly face when you finally get home than any chance of pregnancy, infection or what you’ve just allowed a prematurely balding twenty-three year old to do to you.

In the hospital, you sit in the toilet as your boyfriend asks for the morning after pill. Again, you look in the mirror, and still nothing has changed. The Tia Maria you drank earlier is making you nostalgic, and you look down at your legs, at the ripped stockings (seriously, who were you trying to impress?) and black painted toenails, and all you want is to curl up and go to sleep. It’s not that you didn’t want it to happen, because you did. You’re just disappointed that it wasn’t like it is in the movies. The earth didn’t move. You loved him (or so you thought) but nothing seemed to change once you were no longer a virgin. It simply wasn’t the big deal it’s always been made out to be.

 

 

I know this will come as a disappointment to you. You’re just discovering sex, really. You haven’t kissed anybody yet, let alone let them touch you. You haven’t had a boyfriend unless you count the boy in primary school who gave you a jelly sweet ring, asked to marry you and who you dumped a few weeks later because he wiped his nose on his sleeve in front of you. Sex and the opposite sex are a mystery to you, and you know what? I wish you could’ve held onto that innocence a little longer. Once you discover the reality, that storybook romance you dream about seems childish and overly hopeful. It simply doesn’t work that way. Not for a long time, anyway.

But let’s go back to the beginning, when you decided that nobody would be able to touch you.

It started as a diet. Just a normal, everyday low-calorie diet. After all, you could stand to lose some weight, even I can acknowledge that. I can’t remember what prompted it; whether you made the choice to lose weight or if a comment pushed you over the edge. I do remember how pleased you were when you stepped on the scales and found you had lost a couple of pounds. It seemed easy, easier than you imagined. Everybody seemed to be doing it; weight loss was the in-thing. You’d left school by this point, and so sat at home flicking through your mother’s magazines, picking up diet tips and learning the best way to get a flat stomach. After a few more months, people were starting to comment on how much better you looked, and it fuelled a compulsion to gain approval. You soon learned that losing weight gained you respect, gave you something to talk about, and, in your mind, gave you a reason to exist. Self-harming wasn’t gaining you any fans; you needed a new way of showing the world you were worth something.

And so weight loss became your obsession.

It probably sounds funny now. That the world’s best binge-eater would become a master dieter. Only, it stopped being funny after a while. It stopped being a diet.

I’ll never be able to tell you when the diet became anorexia.

In fact it’s difficult for me to piece events together during this time because you experienced memory loss from the age of thirteen to fifteen. You didn’t lose everything, and there was never any real explanation for it other than some form of post-traumatic stress, but you lost a few key details, and a lot of minor memories. I still struggle to picture those years with any real clarity, although things are starting to slowly come back as I get older.

All I know is that anorexia came first, then, when you weren’t losing enough weight, bulimia tagged along. Bulimia was never as attractive to you; it didn’t have the same sense of control as starving did, it was messy and difficult to hide. Curiously, it seemed to almost cure your phobia of vomiting though; forced purges felt far less terrifying than being so totally out of control, and you quickly discovered that, if you felt nauseous, sticking two fingers down your throat solved the worry of whether you’d actually be sick or not.

As eerily sensible as you could seem, some attitudes you displayed were so far beyond your personality, it was as though you became a totally different person through eating disorders. You began to prize the appearance of hip bones and admired the protruding collar bones of other women. You learned how to angle your shoulders to best display the bone structure you created, you learned how to use makeup to angle your cheekbones further, creating a hollow-faced look you were so, so proud of. As the weight continued to drop, you learned tricks to stop the feeling of hunger; cotton wool balls soaked in water, when swallowed, would make you feel full. You chewed gum constantly to fool your body into thinking you were eating. Fizzy water was more filling than still water, but the bloating it created made you uncomfortable. Without access to the internet, you had to pick these tricks up from overheard conversations, television programmes (you learned the cotton wool trick from Eastenders), and pure guesswork. Twice-weekly trips to the electronic scales in Boots showed that you were losing on average 5 to 7lbs a week at the height of anorexia, yet you still felt it wasn’t enough, and you always felt like a faker. You suspected you were just pretending; trying to be anorexic. You were still a fat girl; you couldn’t see the extremes you were taking yourself to, was entirely deaf to the worries of others and endless speeches on sensible eating. The threats of being sent to hospital went entirely over your head because, to you, it wasn’t a real problem. If anything, it was a solution.

You went from being a shy, probably quite sweet child to an angry, sniping teenager without a good word to say about anybody or anything. Hunger made you irritable and tired, and the slightest thing would set you off into an uncontrollable rage. Once, you screamed at your mother in Marks and Spencer because she caught you checking the calories in a ready-meal. She was only trying to curb your behaviour, make you see sense, but you shouted, screamed, kicked and, eventually, ran.

You did a lot of running away.

You’re still running away.

 
16 Comments

Posted by on January 4, 2012 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Christmas, steroids, Skyrim and too much food.

A lot has happened over the Christmas holidays and I’ve barely had the time or energy to write. I’ve been nominated for a few more blogging awards (which I’ll do a post for after this one) and seen the dermatologist about the rash on my hands and feet. I’ve been spoiled rotten with presents, eaten far too much, and had a few lovely surprises, as well a couple of days away in Manchester with S and his family.

Christmas day was lovely, but it was almost a disaster. I spent the night before Christmas Eve with S, and my mother went on one of her irrational rants when I was a few hours late getting home. I ended up crying on the phone, trying to deflect her accusations of ruining Christmas. You’d think I’d be used to it by now – she does this on every holiday and special event – but it’s difficult to accept that with each year, she still refuses to let go. I was angry. Very angry. Annoyed that she made me cry when I’d been so happy just watching movies and talking with S. Angry that she said I needed to see my GP because I was “losing it” again. I demanded to know why my siblings were allowed to get on with their lives and I was always the one expected to follow the rules she’s set down, and frustrated when she said that they have their own families so it’s up to me to spend Christmas at home. I mean, I have no problem with spending time with her over Christmas, but it wasn’t even Christmas day. I just wanted some time to see S and possibly spend some time with Z (my best friend). As it was, I had to go back home to her and cancel all my plans. Again.

Despite the frustration and stress all this caused, I managed to have a really nice Christmas. I was well and truly spoiled; I knew what most of my gifts were since I chose them (I’m too old for surprises, I suppose) but I really enjoyed what I received and had a lovely, peaceful day watching television downstairs (I rarely go downstairs normally, preferring to spend time in my bedroom) and introducing my mother to Discworld via the Hogfather DVD.

From my mother, I got:

A Discworld DVD boxset (Hogfather, The Colour Of Magic and Going Postal)

The Discworld Mappe, Death’s Domain Map, and the 2012 Discworld Calender (see a pattern forming?)

A purple jumper from M&S, which I’d chosen a couple of months ago. Lovely and snuggly.

Three smokey-eye eyeshadow sets and a solid eyeliner pot.

Two sets of thick winter pyjamas.

A legal copy of The Sims 3, finally.

Lindt chocolates.

Two Cath Kidston tins shaped like books – one with knitting wool, one with a crochet hook and wool.

A white heart-shaped jewellery stand.

Really, I felt bad about shouting at her on the phone after she’d put so much effort into getting me lovely gifts, but S reminded me that I can’t allow her to guilt-trip me. Not now that I’m 27 and trying to move on in life. I got her a CD, gave her one of my Lightning Seeds albums and my Queen CD boxset. She seemed pleased, and played the Queen CD all day.

My sister (E) gave me a toiletries set and a mug with hot chocolate and a tiny whisk. I don’t have the heart to tell her that the hot chocolate tasted like dishwater; she tried, and I know she’s pretty skint this year. I only managed to get her a Vaseline gift set. My other sister (W) hasn’t given me a gift yet, and we haven’t heard from my brother at all since my mother fell out with him. I thought about sending him a text, but didn’t want to be stuck in the middle of yet another ridiculous family feud.

Z quickly popped ’round on the way to her mum’s, and we swapped gifts. She gave me a nail varnish set, which I’m really pleased with. I got her a Hello Kitty bubble bath and some body butter. It’s been a good year for gifts; it really has.

After dinner (I helped out, for once), S came for a visit, wearing a paper hat which he’d forgotten to take off in the taxi. We sat on the sofa and exchanged presents. We’d originally planned for me to stay over at his that night, but I decided against antagonising my mother further after her outburst on the telephone. I was worried he’d become jaded by the situation, as so many boyfriends have before, but he seemed to understand. He gave my mother a handwritten poem, and presented me with a selection of parcels. S had claimed he hadn’t been “able to get me much”, and I’d been worrying that perhaps I’d spent too much on him. The first parcel was a PS3 copy of Skyrim. He said I could play it at his, since I’d been banging on about it for weeks. The next parcel was a PS3 controller, which confused me since he already had two. The third? A PS3. Second-hand, but in perfect condition. I was made up with it. I still am. It’s one of the best gifts I’ve ever been given. S explained that he hoped it would keep me busy when I’m on my own, rather than sitting in my own misery. He’s lovely.

On boxing day, S’s dad picked me up to take us to Manchester to visit S’s sister and her girlfriend. Had a brilliant night, playing poker, drinking beer and smoking weed with his sister and uncle. Played some silly games and helped cook dinner. I’ve always felt very uncomfortable with boyfriend’s families before, but I don’t seem to need to pretend when I’m with S’s family. I feel accepted, for once.

S and I spent the night in a hostel. It was a bit of a nightmare, sleep-wise. Somebody above us spent the night stamping around like a baby elephant, shaking the whole room and keeping me awake most of the night. Still, we had a good night, drinking and listening to Q radio. The next morning we packed and headed off into the city centre, stopping on the way for a Starbucks mocha and to admire the John Rylands University Library. We spent the afternoon in the Museum of Science and Industry | MOSI.

If my writing seems a bit stunted, it’s due to the total mind-fail which a combination of steroids and antibiotics have caused. I’m really struggling to put words together, and I’m only bothering to write this because I know I’ll only have to catch up eventually. A couple of days ago I finally saw a dermatologist, who diagnosed me with eczema which had become infected deep into my feet and hands, causing the pain and a risk of blood poisoning. He gave me strong oral steroids (six tablets each morning), oral antibiotics (four a day), topical antibiotics and steroids, and wants to apply for funding for persistant eczema treatment. I’m relived I finally have somebody who’s taking it seriously, rather than telling me it’s “just” a fungal infection. I’ve been in pain for over six months now. I have to go back in two months, to see how the treatment’s going, and have blood tests.

It’s just the neurologist next week, and hopefully I can relax for a while. I’ve seen too many specialists lately.

On a positive note, the steroids are helping a little with my neck and arm pain, even if they have left me with bruises under each eye and an already-swelling face, along with excess sweating and the urge to drink water constantly. I’m worried about the ineviable weight gain, but I suppose there’s not much I can do.

 
20 Comments

Posted by on December 30, 2011 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

 
Follow

Get every new post delivered to your Inbox.

Join 2,898 other followers

%d bloggers like this: