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.

This is how I procrastinate

With having chronic pain and being unemployed, I spend a lot of time indoors, wondering what to do with myself. Television has never been a big interest of mine, so I don’t have that outlet like many others do. Over the years I’ve gone through many time-wasting phases, mostly involving computer games.

The biggest time wasters in the past have been Age Of Empires (I was addicted for years), Spore and the Thief series. I’ve tried other hobbies, and I do have other interests – knitting, reading, writing, poker, music – but my attentions will always be drawn to gaming.

Over the past few months, I’ve been playing The Sims 3 incessantly, and building houses. It’s my favourite waste of time. I’ve been working on this house for a couple of night now:

A psychologist would have a lot to say about my obsession.

 

After the storm

hind·sight

   [hahynd-sahyt]

noun

recognition of the realities, possibilities, or requirements of a situation, event, decision etc., after its occurrence.
A life-lesson I could have done with learning years ago is that there is no such thing as Superwoman. At least, not in the everyday hero sense. Even if I wore hotpants and a conical bra, I’d still be pretty damn ordinary, and trying to be somebody I’m not has been the downfall to my many attempts at recovery. I know that now.
I’m not proud of my actions last night. Knowing that so many people saw me fall (albeit online) has been a massive reality check. Because I promised myself when I started this blog that every mistake, every slip, every attempt at destroying myself… had to be published. As uncomfortable as it may feel, I can’t hide my emotions and actions away just because I don’t want to be judged.
Sleeping was nigh-on impossible after purging. I confessed to Z, after she became worried about me after a status I left on Facebook. I don’t usually get too personal when it comes to social networking, but I was struggling and needed some sort of outlet other than hurting myself in some way. She said she loved me, and that I could stay at hers if I needed to. I thought she’d be angry with me; that’s how people have always reacted to purging in the past. I’ve come to associate admitting weakness with being shouted at, so to have somebody answer me gently and with compassion… it meant a lot, along with the comments I received on here. I’m fairly sure that they stopped me going further. At one point I was considering breaking apart a razor and continuing the cycle of self-destruction, but after reading the comments and support, I couldn’t. I wouldn’t just be letting myself down, but everyone around me, and that’s sometimes easier to focus on.
After lying awake in the dark for a few hours, tossing and turning and getting more frustrated than ever, I decided to take two 500mg Naproxen tablets. I reasoned that they’re not codeine, and not addictive in the opiate sense, so I haven’t failed in my attempt to give up the opiates. I took a Lanzoprazole alongside, and even though the last lot of Naproxen gave me a stomach ulcer, even a larger than normal dose seemed to sit happily in my stomach for once. I was aching and sore from the stress of throwing up, and I knew that without sleep I’d only sink even further into the massive hole I’d dug for myself. Eventually, nature took over and I fell into a restless sleep filled with bizarre dreams about O and his girlfriend, and about the people I went to school with. They’re pretty common dreams for me to have, but the painkillers must have amplified something because I could remember every detail when I woke up.
Woke to a text off S. I haven’t told him about the purge, and I’m still debating whether it’d be the right thing to do. On one hand, I don’t like keeping things from him. On the other, if it’s just a one-off, a small slip in recovery, is it really a good idea to stress him? S understands better than anyone how I feel sometimes, but I know if he told me he’d made himself sick, I’d be heartbroken. I’m not sure it’s fair to do that to him if it’s just a one-time thing.
Today, I made an effort to give myself a challenge; something to distract myself. I decided to knit a scarf in a day, using four skeins of wool and huge needles. A couple of hours later, here’s the result:
I don’t need another scarf; I’ve knitted loads. Still, it gave me something to do. A purpose.

Liverpool and the imagined bomb scare

The history of Liverpool can be traced back to 1190 when the place was known as ‘Liuerpul’, possibly meaning a pool or creek with muddy water. Other origins of the name have been suggested, including ‘elverpool’, a reference to the large number of eels in the Mersey, but the definitive origin is open to debate and is probably lost to history. A likely derivation is connected with the Welsh word “Llif” meaning a flood, often used as the proper name for the Atlantic Ocean, whilst “pool” is in general in place names in England derived from the late British or Welsh “Pwll” meaning variously, a pool, an inlet or a pit.

http://en.wikipedia.org/wiki/History_of_Liverpool

I love Liverpool. Say the name of the city, and most people outside of the area will instantly think of The Beatles. This frustrates me, because it’s about so much more than that – I’ve always thought The Beatles were a bit overrated anyway – and the history is rich and fascinating; covering the slave trade, ship building, and so much more. Liverpool gets a lot of stick in the town I live in, for being a violent place full of chavvy (does anyone still say ‘chav’ anymore?) kids and druggies, but it really doesn’t deserve that reputation. Really, I think my small town by the sea is jealous of the big city by the Mersey, and I don’t blame it.

My love for Liverpool is the second reason why I agreed to a day out with Z on Thursday. The first reason was simply because I craved friendship and socialising; a good sign, I think. I’m now not only seeking out company, but wanting it.

Didn’t sleep well the night before, but still managed to stumble out of bed at 8am, wash my hair and drink half a coffee. I confess; I wore the same jeans I’ve been wearing for bloody ages. Like, two weeks. I never do that, but in my defense they’re the only pair which fit and I don’t want to wash them and have to wear a small pair which make me feel like an elephant.

It was a good day. I got a taxi to the station and had a minor coffee disaster (the machine ran out of milk; it had to be my coffee, didn’t it?) but apart from crap coffee, I think it went well. Z was behaving herself (that sounds awful; it’s just the easiest way to describe it) and there were no freak-outs or sudden changes of plan. I went to the city and survived; not only that, but I was disappointed to be going home. Talking of going home, when Z and I went to find a chip shop, we discovered that Central Station and the surrounding roads were closed off with police tape. Our first thoughts were of 7/7 – Liverpool could easily be a target – so we asked a policewoman what was going on. She replied that there was a gas leak and they’d had to shut the station down.

Walking around the shops, Z and I speculated whether it was actually a gas leak, or something more sinister. I decided it was a bomb threat, an abandoned bag. Everyone else probably just accepted the gas story, but two crazy, paranoid people together… it was a huge terrorist threat by the time we’d finished, and although the station was still closed when we finally managed to get a series of trains back home, we still had to pass through the empty station. Z refused to look, convinced something would blow up. I just stared out of the window into the flourescent-lit, brown and cream space, feeling like we’d never come out the other side.

Even Z’s little problem with spending money didn’t frustrate me today. I don’t know why my BPD and her Bipolar seem to clash so much; I always thought they were quite similar in certain ways (although I don’t get highs) but my need for control and her recklessness does create friction, even if she doesn’t realise it. Shopping and eating together, I realised that I need to lay off her a bit, because she can’t help it. If she could, it wouldn’t be such an issue between her and her fiance.

I’m not seeing S this weekend. I started typing this on Thursday night, and only just got ’round to finishing it now because I’m feeling a bit low; I always see S on a Friday, unless I’m much too ill. I miss him. We spoke earlier on the phone, and we’ve arranged to meet in the pub on Wednesday when he gets paid. Money’s the problem; we’re both utterly skint. Considering I’ve been getting so narked with Z, I’ve been having my own issues with spending too much recently. I think the culmination of doctor’s appointments, weight gain and general worry have made me crave some sort of comfort, and what better way to feel better than to buy jewellery and make-up? Oh, and clothes. Books, too. Tobacco. Salon shampoo. Haircuts. It all adds up, and this month I’ve totally run away with myself. I try to never borrow money, but I’ve had to ask my mother to bail me out a few times. I feel guilty; she’s been complaining how little money we have right now.

Today, I did very little except a bit of knitting and waste time online. I cut my mother’s hair; I completely ballsed it up last time, and she’s been dropping hints about me fixing it. Quite why she trusts me after I gave her an accidental asymmetric bob, I don’t know. She says she’s noticed I’m seeming more positive in myself, and expressed surprise at the hours I’m somehow managing to keep, and I’m glad she’s noticed. I feel as though I’m balancing on a very thin ledge right now, caught between being relatively okay and sliding back in to not giving a shit about anything, and I need her approval.

I know I rely on it too much.

It doesn’t feel right without S beside me tonight. He said he misses my face… I reckon it’s not half as much as I miss his.

A busker played ‘There Is A Light That Never Goes Out’ as Z and I walked down the main street from Liverpool station. I smiled; I don’t think S will ever know how much I love him.

“Mine’s worse”

Last night’s attempted at sleeping was a total disaster, and I only managed to drop off once I heard the newspaper come through the door. In between last night’s post and sleep, I did a lot of wandering around; made toast, didn’t eat it, made an egg sandwich (causing an almightly ruckus in the kitchen) and ate that like a pig, wandered around the dining room, came upstairs and tried my best to relax but my brain refused to switch off. I started worrying over everything and nothing: whether I’d turned the oven off, if I’d woken mum up, if I’d be too ill to function today.

Eventually woke up around 3pm today to a text from S asking how I’m doing, and a mess in my room I don’t even remember making. After reading the paper I put some effort into tidying up and tried to do some knitting, but I’m feeling restless. It doesn’t help that mum decided to share her views on my constant illness.

This isn’t normal

“I know”

You need to see the doctor

“Then what? Months of waiting for a referral for it to show absolutely nothing wrong with me?”

You’ll be closer to knowing after those months

“Look, it’s normal to be ill with fibro. It’s tiredness”

But I have fibro, and I get on with it

“People have different levels of fibro”

Mine’s worse

… and so on.She says she’s going to drag me to see my GP if I’m not better in 48 hours. In which case, she can sort it for me; I’m not getting up at 8am in order to sit by the phone trying to get an appointment, constantly pressing callback and getting an engaged tone, only to be told there’s no appointments left. It’s a pointless exercise, all they do is give me more medication, which causes more side-effects.

Moss stitch scarf to match the tasseled hat

So far I’ve eaten a butternut squash lasagne, and I’m considering making some garlic bread from a pre-baked ciabatta. I’m bored. I want to go out, but it’s dark and cold and it would only cause an argument. I’m sick of this lack of freedom. I’m twenty-six. I deserve more.

The Needle and the Damage Done

I wasn’t planning on writing anything today. I was going to watch Contact and go straight to bed, but I wanted to share today’s small achievement. I finished the hat I started knitting yesterday. It’s been a real labour of love; my hands are playing up and I can’t wear arthritis gloves to knit in, I don’t like not feeling the wool under my fingers. Somehow, it turned out perfect.

A couple of years ago, I never thought I’d be able to successfully create something with my own hands. Everything I touch breaks and goes wrong; literally. I simply don’t usually have the patience to allow myself to really work at something until it’s perfect. I give up at the first hurdle. Okay, I know it’s nothing amazing, but I’m quite proud of myself. It means I can do something. I’m not useless. I may never have a full time job or experience true health in my mind or body, but I can make something.

I did okay with eating today. I had a poached egg on toast for lunch (no breakfast – I rarely eat breakfast) and a soya mince cottage pie around 7pm. I also allowed myself a watered-down hot chocolate. I know I’ll struggle over the weekend, but I’ve decided to allow myself a Chinese takeaway (S and I have discovered a takeaway which does tofu) and some wine. I can’t allow my difficulties with food to distract from the enjoyment I get from sharing food with S. I refuse to let any eating disorder affect our relationship. He’s the best thing which has ever happened to me; I can’t let some voice in my head destroy that.

So can you squeeze me into an empty page of your diary, and supernaturally change me?

On Friday afternoon, I had my regular hair appointment. I love going to my hairdressers; I never feel as anxious as I do in other situations. I used to dread getting my hair done and often left it for years before some poor woman had to deal with my horrible tangle of split ends and breakage, but I enjoy it now. There’s something soothing about sitting in a chair and having somebody else take control for once.

I’ve gone from bright red to bright orange, at her insistence.

S likes it; he told me it was “gorgeous”, which helped with the inevitable “oh my god what have I done?” panic I was experiencing after. The negative came (as usual) from my mother. Her first reaction was a worried glance, then the painfully honest words, “why did do you that?”. She doesn’t like it, which is no real surprise, but would it kill her to pretend she does? Surely it’s a good thing that I’m no longer hiding behind dull colours? Isn’t it a sign of improvement in my confidence, if I feel able to pull such a bright colour off?

She will never have a positive thing to say about my decisons. I’m already considering going back to the old colour, just to stop the looks she’s giving me.

On a more positive note, last week I knitted a hat and wristwarmers, both from patterns.

I’m very pleased with them.

As always, the weekend was wonderful. I feel guilty that I allowed fibromyalgia to hit on Sunday and so spent the day sleeping while S sat on his computer, but otherwise it was lovely. I came so close to hinting that S is someone I consider someone I’d like to spend my life with, but I don’t want to scare him away.

10 Day You Challenge – six places

I wasn’t quite sure how to take ‘six places’. It could be favourite places, places you’ve been.. so I’ve gone with places which mean something to me, whether positive or negative.

1. My bedroom. I have spent years in this room; living in it, sleeping in it, eating in it, crying, loving, hating in it. My walls have seen fights, heartbreak, tears, sex, drugs, breakdowns and happiness. The essence of who I am is contained in this small room; from the purple flowery duvet cover, to the Buddah. From the wicker basket of knitting yarn, to the stacks of CDs and horror films on DVD. From the pre-pubescent me, burning incense and writing bad poetry, to the present day me; still burning incense, still writing bad poetry. The carpet is stained with evidence of late-night drink and food binges and is black and grey from spilled ashtrays. My clothes, my music, my books, my knitting, my shoes, my posters… they’re in here. This one room has seen so much of my life.

2. The embankment near my house. It used to be part of the sea defences, before they were moved nearer to the coast. I live a 15-minute walk from the coastline, and you can see the beach and the lighthouses in the Irish sea from the embankment. I often go there to sit and think, to simply be alone for a short while. It’s used by dog walkers, but they tend to ignore me; I suppose they don’t often see someone just sitting there, staring at a sand dune. I’ve been going there since I was old enough to discover it, often sneaking out of the house as a young teen to watch the sun rise from behind the water treatment works. I’ve gone to sit there when my heart has been broken, when I thought I couldn’t face another day alive and breathing. I’ve gone there to escape the drama of my family. I’ve sat up there, screaming into the phone at O, begging him not to destroy me. I’ve sat there and contemplated suicide. I’ve smoked dope and stolen cigarettes up there. I’ve had sex, hidden away in the tall summer grasses which grow next to the cow field. I’ve spied on the houses of other people, watched the occupants go about their lives. I took S there, and we sat together, talking and smoking dope. We kissed. I told him how much this place means to me.

3. A local college. When my child psychiatrist failed to diagnose me with anything exciting such as schizophrenia or bipolar, he decided I had Asperger’s Syndrome. It’s taken me a long time to write about this, as it still pisses me off. At the time, Asperger’s was the diagnosis of the week; everyone had it. If you didn’t have it, you had traits of it. Now, I have nothing against anyone with AS, or any autistic disorder, so I apologise if I sound insulting. I was incensed by the diagnosis; I had hardly any traits, and those I did have could easily be accounted for by the bullying I experienced in school, my ever-loosening grip on the world, and the incredibly stifling atmosphere I grew up in. I refused to accept what I saw as a negative label; I may have problems, but I did not have a learning difficulty. I didn’t lack empathy or find patterns in things. I didn’t misunderstand sarcasm (it’s my favourite type of humour), I was terrified of numbers, and I knew exactly how to fit in with the world and society; I just didn’t want to. I was a normal, albeit fucked up teenager. Still, the diagnosis was stamped, at at the age of 17 it was decided to send me to a college for young adults with learning difficulties; everything from ADHD to Down’s Syndrome. The night before my first day, I overdosed on my antidepressants. I cried, I begged, I pleaded, but it seemed I had no choice.

The decision damaged me, without any doubt. I had nobody to talk to bar the staff, and they treated me like I was stupid. I spent my days doing very basic English skills and acting out social situations in drama with a partner who couldn’t even eat by himself. I was sexually assaulted in a hallway by another student, but it was dropped by staff because “he couldn’t help it”. He grabbed my crotch and licked my face. Still, I had to turn up.

Nowadays, I have the Asperger’s diagnosis struck off my medical records. The psychiatrist who diagnosed me was later sacked for malpractice.

4. Haydock Park. It will always hold a place in my heart for being where O proposed to me. It wasn’t the most romantic of situations (we were in a tent and had been arguing), and the relationship came to a bitter, damaged end, but at the time, I was happy. Although I look back now and realise he probably never meant to propose, and that he was always scared to tell me… at the time, it meant everything. I don’t believe in letting go of the happy times in life, no matter how much they end up hurting you in the end.

5. A local bookshop. It doesn’t just sell books, it sells crystals and comics and fossils. It’s tucked away in a little side street on the main shopping road, and I’ve been going there since I was a young child. Along the alleyway entrance there’s shelves of books; books on every topic you could imagine. Books from the 1900′s, maps, instruction manuals. Inside, it smells of old leather. Floors creak under the weight of thousands of books; from modern classics to rare first editions. You can’t touch some of them, they’re worth so much money. Leatherbound editions of Alice In Wonderland rub shoulders with pieces of meterorite and shark teeth. I love it in there.

6. I honestly can’t think of a sixth place. I’m sure one will come to me as soon as I publish this.

10 Day You Challenge – nine loves

1. Knitting. I know it still has a bit of a bad reputation for being a granny sport despite the now fashionable status of it, but I love it. I love the repetition and the satisfaction of the end result. I love knowing I’ve created something, it makes me feel worthy. I love wearing my own hats and scarves.

2. Music. It’s a popular answer to these questions, but I really do adore music of all kinds. My tastes lean towards electronic, dub, new wave and acoustic, but I can honestly say that there isn’t a genre I don’t have some appreciation for. Key moments in my life have a soundtrack; music was my first love. I adore discovering new artists and songs.

3. Cannabis. I know the inevitable links between mental illness and pot are now going through your head. All I can say in my defense is that without it, I would be unable to do so, so much. The pain-relieving properties are undeniable, and medication for anxiety can only do so much if you’ve suffered it all your life. Mental illness, for me, came way before I even knew what drugs were.

4. Smoking. I also love smoking; the feel of smoke going into my lungs feels natural somehow. I never claimed to be the healthiest person.

5. Autumn. I love everything about this season; the colours are fantastic. I enjoy few things more than crunching through leaves on a sunny, cold day. Being able to cover up in coats and hats helps enormously with body image issues.

6. Sleep and dreaming; I live for my dreams.

7. Sci-fi and horror films, especially monster movies like Alien and The Thing. Sci-fi can be looked down on but when it’s done well, it’s done brilliantly. I’m not keen on slasher movies; not because they scare me, but for the opposite reason. I prefer the fear of the unknown.

8. Terry Pratchett, the Discworld series especially. I treasure my Discworld collection and have number of maps waiting to be framed in the house S and I are hopefully gettting next year.

9. John Frieda Frizz-Eaze products. I don’t know how I ever lived without them.