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

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

 

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

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

The dreaded nausea, keeping me awake. The vomiting.

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

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

All small things. All things which matter.

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

Lighthouses

Lighthouses, they don’t bring you to me,
my torch burned out and lights always fade,
I’ve told this story, I’ve walked this line,
this path of betrayal which we both made.

My touch, does it mean little to you now?
I stand on the sidelines, too afraid to speak.
Always the one who stood in the background,
you’re seeing strangers, but do you ever see me?

A new world, one I can’t bear,
cast out to sea with no strength to swim,
not waving, not drowning, just watching the lighthouses,
throwing their lights on everywhere we’ve been.

Beacons, they never clear your path,
and too many obstacles for me to remove,
a tiny flame long since snuffed out,
the control of strangers with their arms around you.

I draw maps, but they just lead you astray,
who’d ever think you’d be the one who would leave?
So strong, so solid, a thing of perfection,
something of envy, at least that’s what I believed.

Lighthouses, they can’t ever bring you home,
sex destroys everything and love always lies,
strangers surround you and I crash with the waves,
you’ll never come to me first; I’ll never shine.

(c)

The show must go on.

All alone, or in two’s,
The ones who really love you
Walk up and down outside the wall.
Some hand in hand
And some gathered together in bands.
The bleeding hearts and artists
Make their stand.

And when they’ve given you their all
Some stagger and fall, after all it’s not easy
Banging your heart against some mad bugger’s wall.

- Outside The Wall, Pink Floyd

The smell of rose and amber shower gel. Cupboards full of donated plates, huge bags of pasta, Christmas leftovers and fake Pimms I can no longer drink. Twinkling lights on my mother’s Christmas tree, now placed between S’s desk and the huge Marshall amps; decorations passed down from my childhood, now belonging to me. Fudge cake in the fridge, and a shiny new Morphy Richards coffee machine sitting on the worktop. The ridiculously ornate mantelpiece covered in Christmas cards and candles, the bedroom lamps illuminating our Ikea bed and my beautiful dressing table. Roses and mistletoe arranged in glass milk bottles, and shelves filled with Discworld books.

My mother cried. She said this is what she always wanted for me. She admitted she never believed it would happen.

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Christmas was wonderful; quiet and easy, without the usual stress of arranging the tree lights absolutely perfectly to calm my mother’s slight obsessions.

This is all so new to me, and I confess it’s a strange feeling, knowing I’ve reached a major life goal. Where was the fanfare, the confetti, the slaps on the back and heartfelt congratulations? Of course, life doesn’t work like that, and in a way I’m glad. It’s no secret that it’s taken me far longer to reach the basic life-targets than usual, and in a way I’d much prefer nobody knew that, at 28, this is the first time I’ve ever felt safe. The first time I’ve been able to have a relationship without ripping it apart at the seams. The first time I’ve moved out of my mother’s house and known I’ll never go back. Known that I’m not doing it just to escape. The first time I’ve been independent without breaking down and ending up in hospital or riding home in a police car.

In a way, it’s like losing your virginity. That first time you see yourself in a mirror afterwards, and you check your face for signs; of knowledge, of growing up, of, well, sex – finally reaching this point in my life should change me physically. There should be something in my eyes, some sort of peace. A difference. But there isn’t, they’re still the same ice-blue, and I’m almost disappointed by that. I’ve wanted this from the day I realised life wasn’t going to give me a smooth ride, shouldn’t something feel different?

Woman Looking at Reflection

You see, I’m worried I’ll take all this for granted. Becoming too used to a situation is… a problem of mine. Considering how terrified I am of losing everything I hold dear, I have an ability to forget to try. I stop making the effort, because it’s scary thinking of making the next step up. I’m very aware that what I have now – the flat, S, independence – all relies on me not going batshit crazy. For someone who breaks down at least once a year, it’s hard knowing that I have to put the effort in this time if I’m to keep what I’ve worked so hard to achieve. I can’t just sit back and let life pile up around me; it’s never worked in the past, so why would it work now?

I know; I’m analysing too much.

Colours

A watered down version of myself
A person you never knew before
With shadows fading and colours shading
Head in my hands, heart on the floor.

A paler person than I used to be
A half-hearted attempt at someone like me
I threw all my colours into you
Sold my substance, because selling’s all I knew.

I thought I could change
That I wouldn’t fade
That I could use kisses
To block out the shame
But I lost all my colour
My inks are all dry
Today I crawl
but tomorrow, you’ll fly.
An unfinished drawing
An unwritten word
Running on empty
Running so scared
Shades lighter than I used to be
A lesser version, a shadow of me.

Always the darkness
Bleaching my skin
Always your distance
Wearing me thin
I gave you my colours
I gave you my word
I gave you the truth
But you never heard.
An unfinished story
An unwritten line
Brightness now fading
Disappearing with time,
A colder heart
Filled with your disease,

You took all my colours
But you never saw me.

(c)

I was scared. O and I had been walking in a local park, after an argument had erupted at a vehicle rally. The same rally I first met Ally at; as she stuck out her hand and looked me straight in eye, I disliked her instantly. Didn’t trust her. I may be paranoid, but more often than not I’m right when it comes to a girl moving in on my boyfriend. 

When O told me he wanted me to sleep with other people, I didn’t understand what he meant. Did it mean he wanted a get out of jail free card to have sex with somebody else? Was it a test? It seemed so unlike him – O was a very jealous boyfriend, just as I was a jealous girlfriend – that I was totally confused by his sudden change in personality. 

I don’t know why I thought O might love me more if I followed his instructions. At the time I was called a lot of names – slag, whore – but  honestly believed I was doing what he said out of love. To please him. To be the girlfriend he wanted me to be. And I wanted affection; I’ll never deny that. Even the affection a fumbling, horrible shag with a grunting older man gave me. I closed my eyes and went elsewhere. Pretending it wasn’t happening. Just trying to make sense of it all.

I will always regret it.

In the corner, by the door

Tonight, like the last, I thought too much
My mind the enemy like too many times before
The candle by my bed burned out long ago
And somehow I find myself sitting on the floor
In the corner,like I’ve always known
That safe place I always retreat
My head plays tricks on me tonight
In the silent dark, I admit defeat.

Tears flow, the pain won’t end
I sing a song but I can’t sleep
I sit in the corner, cigarette in my hand
Fragments of poems laying around my feet
Too many words, too many lies
When all I need is to hear the truth
Too many heartbreaks, too many times
Too many thoughts of losing you.

My head full of thoughts I’d rather not think
Crippled with images I’d rather not see
Playing like a movie with no happy ending
You and her, when it should be you and me
Sick imagery I can’t forget
Burned forever on my heart and soul
Disappears when you hold my close
But tonight, again, I am alone.

And nights like this, I can hear the rain
I can convince myself it’s all falling apart
I can miss your skin and your breath more than ever
I can feel the cracking of my heart
Once again tonight, I fall from grace
Sitting in the corner, by the door
Heart weighing heavy and thoughts of you
As I sit here, alone on the floor.

These are my words, all I can offer
My prayer to you and all I held dear
This is my heart and these are my feelings
My pain, my heartache, my loneliness, my fear
I close my eyes and count to ten
But it’s not a dream and I can’t undo
All the wrongs I caused unwittingly
All the pain I caused to you.

Tonight, like the last, I’m wide awake
In the corner, by the door
Can’t shake the pictures, those sick lullabies
Can’t shake the feeling you might have wanted more.

(c) 2008

Knowing your fiancé is cheating on you is a strange feeling. Painful, more painful than anything I ever imagined, and somewhat desolate. You feel alone, because even the person closest to you has turned to somebody else for whatever you can no longer give. Yet he still wants to be with you. He wants to be with her, too. He wants to have his cake and eat it, and because you can’t imagine how you’d ever survive without him in your life, you let it happen. You cry and scream when you find evidence of her in his bedroom – a picture she drew for him (what, is she like 12?) or a curly, long, brown hair on his pillow – but you still accept his kisses and let him make promises because he’s all you have. 

And you don’t want her to win. You want to be better than her – a better girlfriend, better in bed, a better person in general – but eventually you can’t fight anymore. She wins. He runs to her. 

Then back to you.

To her.

To you.

For months. And you let it happen. 

No alarms and no surprises

* Trigger warning: contains talk of calorie amounts and eating disorders. 

I’m not entirely sure what happened this weekend. Something inside me doesn’t want to write about it, but I’m aware that I rarely talk about my weekends; by the time I get home from S’s house I’m exhausted and it sort of slips away until it feels too late to describe the days.

I’m aware that while I’m writing so much, I’m neglecting other blogs, and that makes me feel guilty. It’s very much all about give and take for me, and knowing I’m taking all this support and not giving anything back… it’s uncomfortable for me. I apologise; things have become a little difficult and writing feels like my only outlet.

Food. Food is an issue. Today I ate a whole low fat banana loaf and some vegetarian sausages and beans on wholemeal toast. Around 1000 calories. Yesterday… maybe around the same; I didn’t count. The past week… around 300-400 calories a day. Sugar-free squash and strong coffee and taking anti-inflammatories on an empty stomach. By Friday I was flaring heavily and dizzy from lack of food. A good dizzy. Confirmation that I’ve restricted enough calories. My stomach was rolling and, despite being almost empty, cramping like crazy. I spent most of Friday afternoon on the toilet.

So really, I do know what happened. The flare combined with restricting; not forgetting regular joints and a bit of alcohol… it all brought me down. S doesn’t have much money right now – it’s getting close to payday – so I packed two big bags of food from the cupboards and fridge. I’d bought a cherry pie and ice cream, thinking that we could snuggle up together in front of a film and I’d feel safe enough to eat. I baked the pie; baked it at 11pm and we watched Andy Kaufman’s standup on Youtube. I couldn’t eat it. I tried; I really did. I wanted to. However much I attempted to swallow though, the pie just became bigger and bigger in my mouth. It tasted of nothing. All I saw in the bright red sauce and cherries was calorie upon calorie. I ate perhaps three small spoonfuls, then gave up. I’d only had a tiny slice. A 16th of the pie, S said.

I tried chocolate Philadelphia on walnut bread. Two small slices later, I felt horribly full and self-aware. Coffee with almond milk became a big no-no once I started thinking, “nuts have fat in…”. I told S that I was feeling ill and that’s why I wasn’t eating. It wasn’t exactly a lie; I felt downright bloody awful.

Saturday, and the weather was lovely. I spend it indoors, either sleeping or reading. I couldn’t face daylight. Cooked pasta and again, couldn’t eat it. S said it was lovely – I’d cheated and used ready-made sauce, but had chopped up some onions and garlic to add to it – but I just couldn’t taste anything. It was like eating cardboard.

I slept a lot, sweating buckets all over S’s mattress. Occasionally he’d wake me with a kiss or a nuzzle, and give me a cuddle. For the first time, well, since we met really, we didn’t have sex once on Saturday or Sunday. I just couldn’t feel anything. Couldn’t find the energy. S didn’t mention it, which is a comfort. Since O left, I worry that the man I love will walk away because I can’t always manage to perform. S… it just didn’t seem to be an issue with him. I’m very lucky; I know that.

He treated me like a princess. Fluffed my pillows and tucked me in with a kiss on the forehead. Didn’t tease me about my hairy, unshaven legs. Helped me over the back step when we went out for a smoke. Didn’t pressure me to go to a party we were both invited to, and came back in the time he said he would, giving me a big kiss and telling me about how much I’d have hated to be there anyway.

We talked a lot about the new flat. The bathroom’s been done; there’s a large corner shower apparently, and they’re doing the kitchen now. We’re getting an oven, fridge/freezer and washing machine. New cream deep-pile carpets. S has a huge leather sofa with a chaise longue. A chaise longue! We’re going to get a Rasperry Pi and set it up as a server for all our music, and have Age Of Empires battles.

We’ll be moving in soon. Around two or three weeks from now.

I’m hoping a lot will change once S and live together. He grounds me. Keeps me balanced.

I came back home on Sunday night, shuffling into a taxi and clinging onto my new phone like crazy so I could have some connection to S. My mobile broke a while ago – the camera stopped working and then the touch screen – and on Thursday I spilled a full cup of coffee on it, destroying the poor thing entirely. I spilled a lot of coffee that day. I’ve been knocking drinks over like crazy for a couple of weeks now.

An acquaintance (I’d say friend, but you know the issues I have with that word) offered me a Samsung Ch@t for free, and dropped it off at S’s house on Friday night. I can’t help but mistrust this person, like I do pretty much everyone else, but it was a kind thing to do. I hate the name of the thing – Ch@t, for god’s sake – but it’s a cool little thing and has a QWERTY keyboard, meaning I can send texts comfortably again. Touch screens made my fingers ache.

Didn’t sleep on Sunday night. I missed S too much. When I’m feeling like this – down, but not depressed – all I want is to cuddle up next to him and feel his arm around me. When we sleep, he wraps his whole body around me sometimes. We’re always touching in some way, and we usually wake up holding hands. It sounds unreal, and part of me is still convinced it is. I just wish I could get my brain in order; I can see a future with this guy.

And I don’t think that’s the BPD talking.

Alcohol and Tramadol

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

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

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

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

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

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

(c) 2008

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

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

I’m glad. 

I have S now.

Very Inspiring Blogger Award

I’m not immune to writer’s block. Usually when I don’t write as often, it’s because something’s going wrong; I’m in a depressive episode or incredibly stressed. I’m too tired or sore to sit with the laptop on my legs. Rarely do I avoid it because I can’t think what to write, because since puberty I’ve wanted to tell stories and finally having a way to express all those trapped words is wonderful.

Still. I just haven’t had the inspiration lately. So for Shermeekaflies from The Possible World to nominate me for the Very Inspiring Blogger Award amused me; I haven’t felt at all inspiring or inspired for a week or so. It also touched me, because despite my reservations on awards being little more than chain-mail, I always appreciate being nominated. I never thought this blog would be read, let alone have almost 100,000 views and more than 2,000 subscribers. Seriously, if I think about it too long, my mind retreats into a nice, safe place where I never put myself out for the public to judge. So huge thankyous, Shermeekaflies!

As usual, the rules are pretty simple;

  1. Thank the blogger who nominated you.
  2. Share seven things about yourself
  3. Nominate other bloggers you think deserve the award, and post on their blog to let them know they’ve been nominated. Actually, I changed the rules a little; originally it asks for 12-15 nominations, but I always think that’s unfair on those who don’t have many blogs they follow or who are just starting out. So nominate anybody. If you can’t think of a blog, nominate a site you believe is inspiring.

1.  I met my first boyfriend in high school, and initially didn’t find him at all attractive or interesting. We had a shared love of The X-Files and my best friend’s older brother was his best friend, but because he was a couple of years above me, we only really saw each other in the library and at parties and I certainly never saw him as relationship material. I still wonder why I agreed to go out with him; I did really like him but can’t help thinking that I was just reaching out for some sort of affection. Anorexia was still lurking, and I was at the height of bulimia and self-harm when he first kissed me on a bed at a house party when I was fourteen. The kiss was memorable, but only because it was far from the romantic experience I imagined; his tongue seemed to fill my whole mouth and neither of us really knew what we were doing. I couldn’t stop shaking; each time he touched me I’d break out into noticeable spasms, my arms and legs shuddering like crazy until he let go.

After three months of talking on the bridge in the park, sitting on swings and eating chicken and sweetcorn pizza together, he left me. He came to my house, and I freaked out; I can’t even remember what caused it. I was paranoid and edgy, backing him into a corner and screaming uncontrollably in his face. I’d been jealous of his friend Carol. I invented scenarios where he was sleeping with her. Each time he went to her house to study for his GCSE’s, I’d break out into a cold sweat and convince myself he was leaving me.

I threw a chair at his head and left a hole in my bedroom wall. We didn’t speak again for over a decade. He’s married now. His wife shares my first name.

2. Songs almost guaranteed to make me cry include Vincent by Don McLean, Out To Get You by James, Why Not Smile by R.E.M, Exit Music (For A Film) by Radiohead, The Pills Won’t Help You Now by The Chemical Brothers, Johnny Cash’s cover of Hurt, Bulimic Beats by Catatonia, and Asleep by The Smiths.

3. Since taking antidepressants, I’ve rarely cried; not even at the songs above. I’ve always been a very outwardly emotional person and in the past it’s been hard to control the waterworks. I cried at everything. Now it’s difficult to squeeze the tears out even if I want to. It’s not a listed side-effect but I can only pin the change down to the chemicals in the pills filtering the urge out of my brain. Take it from me; the ability to cry whenever you need to is a blessing, not a curse. I miss the outlet.

4. The idea of reaching the age of twenty seven never used to occur to me. By puberty I’d decided I wasn’t going to live to eighteen. I didn’t really have a reason for it other than morbid hormonal obsession with my own death and mortality, and once the eating disorders and suicidal behaviour kicked in, I accepted that I’d never become an adult.

Now, I’ve been an adult for nine years, despite all the hospitalizations and suicide attempts, and I’m still unwilling to let my childhood go. I was never supposed to make it this far. I wasn’t prepared for it.

5. My favourite poem is I Am, by John Clare:

6. I don’t know how many people I’ve slept with. It’s in double figures, but I can’t begin to guess.

7. One of my favourite artists is Paul Kidby. I’m a huge Discworld fan:

Nominations:

I’ve chosen the above bloggers simply because, as the title suggests, I find them inspiring. Either through their honesty or ability to tell their stories in a beautiful, powerful way.

I hope you’re feeling happy now, I see you feel no pain at all.

We drank vodka and orange juice, beer, cider and rum and coke. Played Boggle online, keeping a tally of scores. Sat in the garden – both rain and shine – and smoked while getting sunburned one day and sheltering from the torrent by squeezing into the spider-infested shed the next. Ate pizza, kebabs, garlic mushrooms, toast, a roast dinner, chocolate mousse, biscuits and pack upon pack of Wotsits. We sat by the lake and stuffed our faces with chips, watching a swan paddling away near a stack of beer barrels and an old paddle-boat which is long past its prime but still takes tourists out on the lake in the summer; rust and all.

We lay in bed for hours. Napped when we felt like it, and stayed up late. Ventured out to buy large mochas and sat for hours, watching the world go by. Bought blackcurrant beer and German ale, and laughed at the weird and wonderful passing our little spot in the street. Had mind-blowing, sweaty sex, over and over. Watched Trailer Park Boys on YouTube and ordered takeaways so we wouldn’t have to go shopping. Played 8-ball with a couple of friends and smoked a not-so-sneaky joint outside the pub. Got drunk and stoned and laughed at nothing, for days on end.

Now, it’s Wednesday morning – almost 5am – and I’m sitting on my bed, wide-awake, cannabis smoke floating in the air and through the detritus which covers my bedroom. I don’t know what happened; a miniature hurricane, I can only assume. Pill packets and incense sticks are cluttering up my desk, along with bottles of nail varnish remover, jewellery holders, and empty tobacco packets. The coffee I made is strong and bitter, with grounds still floating on top, and my mouth is dry from all the smoke. I haven’t slept, and I have a doctor’s appointment at 9:30.

After such an amazing, hedonistic weekend… I should be happy. I am, really. I’m just… eh. Angry, I suppose.

I’ve occasionally mentioned having tendonitis. Acute Achilles tendonitis, to be exact. I’ve had it for over a year. There was no real obvious cause; the sole of my foot started aching every time I moved and, in a worryingly short space of time, I lost the ability to flex my foot up or down. I stuck it out for months, deciding it was yet another frustrating part of fibromyalgia, until the pain became so unbearable – like knives being driven into the back of my ankle – and I woke up one morning unable to hold any weight on my left foot. It was just dead; tingling and unresponsive with sharp ribbons of pain snaking over the whole of my lower leg. Naturally, I was a bit concerned and, considering I couldn’t walk and felt a weird combination of numbness and excruciating pain – along with balloon-like swelling of my foot and ankle – I went to A&E.

Long story short, I was given some painkillers and told to go home and rest. I wasn’t even seen by a doctor. I cried, but it got me nowhere. After going to my GP to complain that nothing was done to help the obvious damage, I was referred to a podiatrist/physiotherapist. He manipulated my foot, gave me insoles to force the tendon into place, and covered my ankle in ice until it burned. Whatever he did, the swelling refused to go down and so he referred me onto the biomechanics clinic to see a rheumatologist who specialises in movement.

Of course, they wrote to me and informed me that my appointment was to be moved to September.

That’s not why I’m angry. I’m angry because, after over a year, I’m still in pain. It’s yet another ridiculous sensation to deal with, and I’m sick of being pushed from pillar to post when nothing really seems to achieve anything. I’ve had an ultrasound scan, but still – over a month later – don’t know the results.

For the past four days, I’ve been unable to walk without standing on tip-toe on my left foot, because the tendon is so damn tight I can’t move it without pain. Tooth-gritting, wincing, tears-in-the-eyes pain. S has been his usual amazing self – fetching cups of coffee for me and helping me get over the back door step – but now that I’ve come back to my mother’s after an extended weekend (from Thursday to last night; S took some time off work) I’m quickly sinking into the old frustrations and regrets about not pushing harder for treatment. I’m such a mouse sometimes. I don’t want to tell anybody what to do.

That has to change today. Originally, I was seeing my doctor for a swollen finger; hardly the medical drama of the century, but a very painful inconvenience, and I figured I could get the whole blood pressure/side-effects/general emotional well-being stuff out of the way for another month or so. However, the red skin and suspicious ridged nail will have to take a backseat, because I’m determined to get something done about this damn foot today.

If I have to cry, I think I will. I rarely cry in front of doctors – I already feel inferior to them – but quite honestly… I just want this pain to stop. I have enough to deal with already, and I just need some respite. Some time to enjoy the effects of Lyrica – which doesn’t work on tendon pain or swelling – and try to start living my life again. Instead, this fucking tendon has taken over my life.

Over the weekend, the photograph of myself I posted has been weighing on my mind. Did I do the right thing? Am I utterly off my head to think that putting a photograph on such a personal blog is a good idea? More than once, I’ve thought about removing it; just deleting the post and forgetting it ever happened. However, doing that would also mean I’d lose all the comments which, although hard to read without wanting to run away, really made me feel secure, and my cold old heart was pretty damn warmed by knowing there are people reading this who don’t think I’m disgusting.

Also… nothing is ever lost on the internet. It’s there forever now.

So I just need to suck it up and accept that my anonymity was ruined a while ago, and it’s not like I’m a celebrity. The chance of somebody I know finding this blog on their own is still lower than low, and if they did find it… well, maybe they shouldn’t be so nosy. Perhaps they’d learn something.

I should really write a list for my GP. Each time I see him, I forget something vital. I only refuse to do it because my mother insists I write a bullet-point list – typed and printed – for every appointment; a bit of teenage rebellion which I never quite grew out of. This time… I haven’t slept. I haven’t drunk nearly enough coffee, and the weed is stronger than usual. Great for pain; not so great for thinking clearly.

If I throw myself on the floor and have a tantrum, do you think it’d achieve anything? I feel like it’s about time to direct my anger elsewhere than at myself.

 

“…or does the mind control the body? I don’t know.”

Yesterday I woke up expecting to finally be over the ‘flu after a week of hacking, choking, snotting, complaining and feeling like my head is going to explode. I expected that even I – she of little immune system after taking steroids – would have shaken it off by now.

No. Of course I haven’t; that would be expecting too much. To add insult to injury, I developed a huge cold-sore on my lip, going down my chin and blistering like crazy. This morning (well, afternoon) I woke up, coughed for a while, realised I had no energy and sunk back into bed. A quick glance in the bathroom mirror confirmed that the cold-sore from hell has grown even more. I look like a mutant.

I’m frustrated. Today, a group of friends have gone to the beach to celebrate the solstice. We do it every year; party until the sun rises the next day. I missed the last party due to illness, and I’m missing this one too. It just doesn’t seem fair.

I sometimes wonder if I make things worse for myself; that perhaps I’m so used to feeling sick that I expect it, and maybe I pretend things are worse than they are. I’ve always wondered that. A lifetime of illness isn’t normal, after all. I was sick when I was born and, twenty-seven years later, I’m still sick. I’ve had ear infections. Urine infections. Infections in my cervix. Almost daily diarrhea since I was a child. I went into anaphylactic shock as a baby. My ovaries are covered in cysts and my cervix is full of scar tissue. They removed it, but it comes back. They give me antibiotics for pelvic inflammatory disease but they don’t work. My gallbladder got infected, and my bile duct was blocked; which caused pancreatitis. It took months to recover from having it removed, and again, I was left with scar tissue and a life-long need for strong anti-acids to cope with stomach acid going the wrong way because my bile duct was damaged.

I have a rare type of eczema on my hands and feet; one which can’t be treated by even the strongest steroid creams. I’ve always been prone to eczema breakouts, but this is something else; this breakout has lasted over a year. I’ve been given every cream available, and was turned down for expensive treatment so I’m left with no choice but to live with it. It burns; I need regular antibiotics to combat the infection which constantly breaks out in the cracks, and my skin is scarred from how deep the eczema goes. Most people with this type have it for life, with occasional remission.

At the present time, I am under the care of one of the top rheumatologists in the UK, along with the dermatology department, the bio-mechanics clinic and my own GP. I’m waiting to be referred to urology, and possibly back to gynecology. Sex has become incredibly painful and, afterwards, it burns for hours. The slightest pressure is causing my skin to tear, even on the outside.

Logic says I can’t be inventing any of this because my medical records are stuffed with consultant’s notes, diagnoses, test results, second opinions and operations. Each and every problem has been documented and proven to be real. Yet I still question myself.