Last stop: this town

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

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

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

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

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

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

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

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

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

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

“Has the anxiety and depression become worse?“

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

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

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

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

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

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

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

I have freedom.

You don’t know how amazing that feels.

Related articles

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In absentia

It’s a strange feeling. Sitting on the sofa, listening to 4 Non Blondes, drinking coffee, and realising I finally made it. Knowing it took what felt like forever to get here, and trying to accept that I now have my own life. My own rules. My own independence.

Neglecting my blog, and everyone involved… it hasn’t felt good. The occasional tinge of guilt sneaks up on me, knowing that so many people have supported me for over a year and are still commenting despite my absence. However, sitting in the front room and seeing my belongings mixed with S’s… I honestly never believed it would happen, and real life has to take precedence.

Yes, we moved in together. I escaped; and not only do I have freedom for the first time in years, but I also have access to my own finances for the first time in my entire life. I got the bus into town two days ago – a feat in itself, considering how long it’s been since I felt brave enough to use public transport – and checked my bank account. Seeing money in my account for the first time since receiving my stepfather’s inheritance… you don’t know how amazing it feels. Knowing that, for the first time in twenty seven years, I am entirely independent. For the first time, my life is my own and not controlled by anybody but myself.

The past couple of weeks have been an unbelievable nightmare, culminating in a full-force BPD freak-out where I cried, screamed, howled, and eventually called a taxi to take me to S’s. I couldn’t cope with anything at all, and I admit there were a couple of situations where it looked like I was going to lose it entirely. I hit myself in the face. Toyed with a razor and a pair of scissors. Pulled a chunk of hair out, just to feel anything but the horrible pain inside of total loss of control. Stopped eating entirely for a week, living on strong coffee and the last of my dope stash, codeine; anything I could get my hands on to numb the fear just for a short while.

In truth, I don’t know how I got through it all. Trying to explain just how wrong everything seemed to go…it’s impossible. You can’t put such things into words.

You see, it wasn’t just the move stressing me out – although it really didn’t help – and my habit of not being able to cope with more than one thing at once really didn’t help. Quite why I decided to stop taking my medication for a few days, I’m not sure… I should know better, and can only assume that BPD was telling me I’d be better off without them. It’s happened often in the past but I thought I was over it, and had more sense now. Obviously not.

Within two days I’d gone back to the old ways. Panic. Everything was a disaster. The world was ending. Paranoia, beyond belief. Constant – and I mean constant – tears. The need for reassurance. Grabbing onto anything to survive. Laying awake at night hearing the slight whisper of the voices creeping in. Shadows and movement just out of my vision. Feeling victimised by things which hadn’t even happened.

I don’t know how I used to live like that.

Along with everything else I was trying to deal with – the return of fibro pain from not taking Lyrica or Celebrex/Naproxen, the tendonitis getting much, much worse, my mother freaking out over every little thing connected to the move – I finally got to the Biomechanics appointment which had been moved around so many times; I thought I’d never get there. Waiting was pointless though, as nothing was achieved. In fact, I may as well have stayed at home and abandoned any hope of help.

After months of waiting, after being discharged from physio after nothing helped, all the appointment involved was being told I need to do exercises to help the pain in my ankle and foot. In other words, I waited months – and worried – simply to be told exactly what I was told at physio. Told exactly what I already knew. I tried explaining that I’d had to stop the exercises since they were so painful but was simply told to do them regardless. Then, I was referred back to physio.

What is it about me? Why does nobody take me seriously?

I pondered this for a while after the appointment. There’s no denying that I’ve been let down by the NHS a ridiculous number of times; pushed from pillar to post, sent from one specialist to another, and always been made to feel like more of a nuisance than a genuine patient.

So I sat, and thought, and came to perhaps a controversial conclusion; that my past history of mental illness is affecting my treatment. I know this sounds paranoid – and it’s understandable that perhaps the idea of doctors refusing to treat me due to mental illness is something many would pooh-pooh as ridiculous – but the more I thought about it, the more sense it made.

You see, I’ve never been able to shake the feeling that many see me as a faker. A chancer. Someone who goes to the doctors just to get attention and treatment I don’t need. Munchausen’s syndrome comes to mind.

It’s possible that some of my symptoms are psychosomatic; in fact, I know some are. Others however… you can’t fake them. It’s impossible to fake things like hair loss, swelling joints, jaundice, constant coldsores, endless urinary infections, weight loss, tendonitis, crunching knees and fingers, sciatica… all these things are real, physical symptoms, and have been proven to exist. So I can’t be faking it; doctors themselves have confirmed a myriad of symptoms and illnesses.

Yet… I’m not getting the treatment I’m entitled to.

Last week, I discovered something I’d never known, and it’s only served to confirm my suspicions. I spoke to my mother about accessing my medical records – she agrees that I’m not being treated fairly – and I found out that when I was seventeen, I was sectioned.

I never knew. Nobody told me. I assumed I was simply being ‘kept an eye on’ when I was stuck in hospital after a failed overdose, but in reality the truth was kept from me to protect me. I can understand why, but still… it’s a lot to come to terms with. I’ve always held onto the belief that no matter how crazy I’ve been, I’ve never been sectioned. Somehow that belief helped me cope. Now everything’s been turned upside down. A lot of my life has been a lie.

It’s a weird thought. I was sectioned, and never knew.

It makes me wonder what else I was never told. Just what my past involved. I know for a lot of my teens I was out of it, and couldn’t take much in except for the difficulties and problems I experienced, and I know I was often trapped in some form of psychosis; living my life in a bubble created to protect myself. There’s so much of my teens I can’t remember – medication, craziness, lack of sleep, lack of food, drugs, drink… it all blocked out memories – and it’s entirely possible that things happened I wasn’t aware of.

So much of my life has been pieced together from flashes of memory; some of which may not even be real. In truth, I don’t know half of what I’ve lived through. I just… locked it away somewhere.

They should have told me. I had a right to know.

Right now, I’m trying not to think about it too much. I have an appointment with my GP on the 9th, and I’m planning on talking about all my worries. I’m really not up to it right now – a lot needs to be done to the flat – but this needs to be sorted once and for all.

Related articles

• Is there anything I can do to help my ill friend? (ask.metafilter.com)
• Munchausen Syndrome (mademan.com)
• Then Why Am I So Ill? (knackeredhousewife.com)

 

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.

Related articles

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Rude Awakening

Another day, another suggestion that I see my GP.

“I think you’re taking the wrong medication, the Daily Mail says Lyrica is used for anxiety but you’re on beta-blockers and Cipralex so you don’t need it all”. 

I curse the bloody Daily Mail.

Yet again, I slept badly last night. I’d napped during the day – an unsatisfying, food-avoiding fibro nap – and ended up awake until dawn. Dozed off sometime in the morning and was woken by my mother insisting I get out of bed and make an effort. Shouting about medication and having to see my doctor. I’m sick of hearing this at least once a week. Of course, I reacted; half-asleep and irritated, I burst into tears. I just wanted some peace. I wanted to wake up naturally on my own, rather than having my sleep cycle decided for me.

I used to try to avoid getting angry, but I’m tired of it now. Yes, I sleep at odd times but I’m not the only one, and is it any surprise?

Moving out can’t come too soon, but even that comes with its own hurdles. For weeks now, my mother has been trying to get me to pack my stuff away. Telling me to measure furniture and asking about curtains and toasters. Although I’m determined not to let her take over this move, I know she’s trying her best to involve herself with every aspect of it and I really don’t want her to. This is my final attempt at freedom; the first time I’ve actually moved out with a purpose. It’s mine and S’s flat, not hers… and I’m not sure how much I can humour her without blowing up in her face.

Don’t get me wrong. I know she’s trying to help. After all, she’s worried about me. Of course she is. I’m moving into a flat where I’ll have to take control of my own prescriptions and moods; but she seems to forget that S will be there too. And with the freedom living away from my mother affords, I know I’ll be happier. I know I’ll be able to move on somewhat, and hopefully work towards maybe getting to the point where I can work from home in the future and get off benefits. Living here… she’d never allow that. She’s too protective.

I’m not saying I’ll magically get better once I move away. I know there’s a lot of hard work to be done; specialists to see, tests to have, and a lot of the past needs to be dealt with before I can even begin to push on in life. I may never improve physically. I may get worse. But there’s a tiny, tiny chance that being allowed my own freedom and personality could relieve some of the stress on my shoulders and, in time, allow me to think of the future.

Yet again, I’ve wasted an entire day. After being so rudely woken I simmered in my own frustrations for hours, only venturing downstairs once to make a coffee. I avoided my mother. Didn’t offer to make a cup of tea for her. Usually I relent and accept things are never going to change, but why should I? I’m so close to that freedom – close enough to almost touch it – and here she is, still insisting I see my doctor every time I sleep in. Still combing the Daily Mail for health articles to thrust in my face as I’m trying to wake up. Still telling me to measure the walls of the new flat and fit furniture in accordingly.

Is it really the end of the world if I don’t put my desk where she wants it?

I’m tired, but doubt sleep will come easily tonight. I simply can’t cope with being woken suddenly. It throws my whole day off. I’m trying not to feel anxious, but having that bloody one-sided conversation about my fucking GP at least once a week is driving me up the wall. I’ve made no secret that I’m struggling right now; to add to the anxiety and panic attacks, I’m falling down the ED rabbit hole again. It’s so easy to do. It’s control, you see. If I control what I eat, things can’t get on top of me. Knowing I’ve hardly eaten for days is a comfort; I may not be able to deal with the stresses of every day life without freaking out, but I can restrict calories like a champion.

 

Dreary Mondays and The Daisy Award

As Mondays go, it’s been a pretty dreary day. Grey clouds in the sky, a cold wind in the air, and fatigue upon fatigue dragging my body down into the floor. After a weekend spent lying in bed while S works on his programming and struggling up and down the stairs for smokes, I’ve come to the conclusion that I’m having my first fibro-flare since beginning the treatment with Lyrica. It’s a strange feeling; none of the usual muscle spasms  but all the extreme tiredness and confusion. My thighs and upper arms don’t ache, but they still feel like they’re filled with lead. It’s just not hot lead anymore.

I don’t know what I thought. I just didn’t expect to still have flares, I suppose; I know Lyrica only helps with muscle pains and spasms, but for some reason the idea of a flare never entered my mind. It’s incredibly difficult staying awake; I got up with S this morning to see him off to work and didn’t sleep well last night, so it’s very tempting to close my eyes and fall asleep for a little while. Sometimes it seems like my abnormal sleeping habits will never right themselves.

http://blog.pixelmai.com/

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The lovely Quiet Borderline has kindly nominated me for The Daisy Award. The rules for this award are much the same as usual:

* Thank the person who nominated you.

* Tell your readers 7 unusual things about yourself.

* Nominate some worthy bloggers.

What is a quiet borderline?

It’s potentially less common, but equally insidious, maybe moreso, because it can be trickier to diagnose someone who displays characteristics of a Quiet Borderline. Why’s that? Because they are much more likely to Act In, then Act Out. They are not known for raging openly, where other people can see them, so it’s more difficult to recognize that there’s a problem. It’s very typical for only those people that are very close, often intimately involved, with this person to know that there is a problem that needs to be helped with. This is something that I identify with very well. To the outside world anyone you ask would tell you I am the pinnacle of pulled together. They don’t know what goes on inside.

Which ultimately is not that different from what you would consider a classic Borderline presentation. By which I mean that all those underlying reasons for a BPD diagnosis are essentially the same in those that are “quiet” and those that are acting out. The main difference is how it presents and manifests… how a person expresses their symptoms.

Quoted from Beyond The Borderline Personality.

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The Quiet Borderline is a blogger I much admire. I hesitated to use the word “blogger”, because it doesn’t sum up the depth and detail in her words. Above all else, she’s a writer; and one I highly recommend reading if you want to know the ins and outs of BPD. Her tenacity in dealing with often horrible situations is to be respected, and it’s an honor to be nominated by somebody like her.

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Seven unusual things

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1. Like The Quiet Borderline, I have mangled toenails. Both nails on my big toes were removed in my early teens, and I hide the skin where it never grew back by covering it in nail varnish. You will never see me without varnish on my toenails; it’s almost an obsession. I can still remember the nurse squeezing my hand as a needle was pushed right through my toe. I think I broke her fingers.

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2. I’m incredibly blasé about needles, otherwise. Blood tests have never been an issue for me, and as a child I used to love watching the blood go up the cannula into the little vial. Heck, I still do that.

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3. Although I knit a lot, I rarely finish a project. To date I’ve made six hats and six scarves, despite spending hours knitting like a fiend. Like most other things in life, I’m dogged by paranoia that whatever I touch ends up ruined. If a stitch drops or I accidentally purl instead of knit, I won’t go back and fix it even though I know how. It’s failed by then.

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4. I have a great weakness for Nero’s hazelnut mochas. Not really unusual, but heck. It’s a fact.

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5. Considering I often sleep until the afternoon, I absolutely adore the morning. Especially when the sun is just rising on a warm day; it makes me blissfully happy. I’ll throw open my curtains and open the window, even if I’ve been up all night staring at the laptop screen and smoking like a chimney, red-eyed and coughing. Even if I go to sleep straight afterwards, I have to see the sunrise if I have a chance. It’s always peaceful. I love the world before it wakes up.

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6. I often buy books based purely on the cover art.

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7. When I’m stressed, I spend money. It’s a release of sorts, almost similar to self-harm. In fact, I’ll often buy things I don’t need rather than cut myself. It’s not quite as effective, but holds off the urge for a while. I’ve never been in proper debt, but I do owe my mother quite a bit of money. I keep borrowing to pay for hair products and make-up; you see, when everything goes wrong I try to patch things up with the false illusion of beauty. If I’m pretty, life can surely never be harsh. I need to spend that money because that lipstick may just be the answer to everything.

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Nominations

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I don’t really know what The Daisy Award means, so my nominations are bloggers who have inspired me – in their own ways – to keep writing and sharing.

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Judith Atwood

Word Flows

nothinginmynoggin

Poplar Culture

Michael’s Lair

theUnleashingofMe

The Deep Roads

Don’t Let Me Get Me

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• Lyrica, You Deceptive Wench (anexerciseindiscipline.wordpress.com)

 

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.

 

Related articles

• Eight Things I Learned from Pain. (elephantjournal.com)
• The Emotional Toll of Fibromyalgia (healthmad.com)
• Fibromyalgia Pain Is REAL (lifesworkinprogress.wordpress.com)
• Fibromyalgia and Mental Health (carlarenee45.wordpress.com)

 

Awards and the street party

I never thought I could say that the Queen stopped me from making a coffee, but it seems the monarchy reaches further than Buckingham Palace. The drug squad officer who lives opposite me arranged a street party for the jubilee, and for reasons unknown he decided to hold it on a Tuesday; two days after the actual event. I slept badly last night, and waking up to a thousand watts of bad disco music wasn’t my idea of an ideal morning.

Perhaps I’m the commander of my own fate, but I refused to join in. My mother has escaped to my sister’s house, and I’m alone in my bedroom trying to watch E.R over the music and awful DJ, and wishing the neighbours would go elsewhere; I can’t walk through the living room without being seen and I don’t fancy being the subject of neighbourly gossip as I stumble past the window in snowflake pyjamas and with hair like a pile of orange candyfloss.

Gossip – Norman Rockwell

I’m restless today; although the weekend was as wonderful as always, a great big fibro-flare hit on Saturday night and I’ve hardly slept since. Hours of accidentally kicking S out of bed with leg spasms and needing neck rubs and help getting out of chairs has led to a bit of guilt. S is so good to me; he never complains, and part of me thinks that perhaps he doesn’t even mind having to help to me out… but I constantly worry about being a burden on others, and I worry more when it comes to S. I’m terrified of being a ‘bad’ girlfriend to him.

In the past… I’ve always been made to feel inferior in relationships. I’ve been partly to blame – I naturally set myself lower than others – but S is the only man who’s never made me feel like I’m asking for too much.

I’ve been going through a weird time recently. Not quite depressed, not quite content; something in between which I’m unsure how to deal with. Anxious and edgy, prone to overreacting to repetitive noises and conversations I don’t want to be a part of. I’ve tried to keep up a normal-ish routine, but I’ve missed a lot of comments and award nominations from readers. So I’m going to attempt a small catch-up.

I’ve been nominated for the Reader Appreciation Award by Another Battle, magically mad,  NZ Cate, Sparrow, Hawkruh, and also the Beautiful Blogger award by eniola folarin. If I’ve missed anybody out, my sincere apologies; it took me 20 minutes to find all those. I really have to keep on top of things. I’ll follow the rules for the reader appreciation award:

1. Include the award logo somewhere in your blog.
2. Answer these 10 questions, below, for fun if you want to.
3. Nominate 10 to 12 blogs you enjoy. Or you pick the number.
4. Pay the love forward: Provide your nominee’s link in your post and comment on their blog to let them know they’ve been included and invited to participate.
5. Pay the love back with gratitude and a link to the blogger(s) who nominated you.

The Questions…

1. What is your favourite colour?

I don’t really have a favourite; I prefer shades than actual colours. Greens, purples and browns attract me the most.

2. What is your favourite animal? 

Orcas, lemurs, sloths and, of course, cats. I have a fondness for frogs and snails too.

3. What is your favourite non-alcoholic drink? 

Coffee. Lots of coffee. I’m not fussy as long as I can get some caffeine, but the stronger the better. I have a weakness for Nero’s mocha.

4. Facebook or Twitter?

Facebook. As much as I try I can’t get on with Twitter. I have an account (halfwaybetweenT) but rarely mage to log in successfully, and when I do I can’t keep up.

5. Favorite pattern? 

Not a pattern as such, but I have a Rennie Macintosh rose tattooed on my back:

6. Do you prefer getting or giving presents?

It’s a cliché, but I love giving gifts. There’s few better feelings than somebody opening a present you’ve given.

7. Favorite number?  

Strangely, seven. There’s no reason why; it just feels like a nice number.

8. Favorite day of the week? 

Friday. Unlike most I don’t have to get through a working week, but the weekend means a lot to me. They’ve always been ‘mine’ – it’s the one time my mother doesn’t expect me to spend time at home. She still asks where I’m going – and it’s always to S’s – but I can live with that.

9. Favorite flower?

Fuchsia and chives.

10. What is your passion?

Writing.

The following blogs are about different subjects, but all fantastic. I’ve picked these bloggers because of their honesty and ability to express emotions and situations in ways I can only hope to.

Diabetic Redemption

My Bipolar Life

Letters to my Future Self

quitthecure

Manic Macca’s Bipolar

A Little Crazy In The Coconut

Not Quite Lost

stolencrayons

My Ox is a Moron

Struggling with BPD

thepickledprincess

myinnervoiceislaughingatme

Apologies for the long post; it’s given me something to do while the false festivities assault me from outside.

 

 

Tomorrow never comes.

Woke at 5.30am, reeking of fake tan and feeling wide-awake. A few hours later, I’m sitting up in bed, half-watching the first season of ER and trying to pick dried wax out of my eyebrows and off my face. S is taking me for a meal tonight at our favourite Indian restaurant, so I’m trying to remove all ten tonnes of body hair before he sees me; having polycystic ovaries is a nightmare sometimes. I’ve been managing the symptoms quite well for the past few years – losing five dress sizes almost overnight in hospital helped – but it’s slowly getting worse again.

My diet is failing miserably. I lost 6lbs, then started binging again. Not badly; just enough to halt any progress in its tracks. I’ve been avoiding the Slim-Fast tins in favour of bowls of cereal and toast, convincing myself I’ll get back on track tomorrow.

It’s never tomorrow. I’d do well to remember that.

After the stress of yesterday, I slept like a baby last night. Drifted off around 9pm and slept right through. I’m not even sure I can remember dreaming – which is incredibly rare – and when I woke, I didn’t feel the usual urge to snuggle under the covers and put off beginning the day. Rolled a joint, made a coffee, checked my emails and played some Boggle, all before 7am. Considering I’d been getting up around 3 in the afternoon and going to bed when the sun rose… I think I’m doing well. There’s no doubt it has to be down to the Lyrica; nothing else has changed.

When we bumped into S yesterday, my mother chatted to him about how Lyrica’s worked for me:

“It’s a miracle, isn’t it?”

S gave me a hug and looked me up and down:

“It’s great, it’s fantastic seeing her so bouncy and happy again”

Related articles

• Your Health Questions Answered: PCOS vs. Diabetes? (pphsinc.wordpress.com)
• Vitex: A PCOS update (scatteringmoments.wordpress.com)
• In The Beginning (unapologeticallybrilliant.wordpress.com)
• A Different Polly? (shescoops.com)
• current PCOS journey (alliwanttodooo.com)

 

I said “see, too beautiful to let you sleep”

“It’s vital to remember who you really are. It’s very important. It isn’t a good idea to rely on other people or things to do it for you, you see. They always get it wrong.”

From Sourcery by Terry Pratchett

According to BBC weather, it’s 21° C and cloudy outside. Sitting in my bedroom with my window flung wide open, sweating like a pig and hating the sun… I beg to differ. I went outside earlier for a cigarette, and after a couple of minutes I could already feel my shoulders and face burning in the heat. I know a lot of my readers are from the USA, and I don’t know if news of the UK’s weather has reached that far but… it’s hot. Very hot. Yesterday was showing 30° outside, and it’s much the same today apart from a breeze coming off the coast.

Don’t get me wrong; I love summer. I love the green trees and being able to wear sandals. I love how the sun brings out my freckles and gives my normally grey face some colour. I don’t tan – natural gingers just burn, and burn badly – but the sun clears my skin up and makes me look healthy; something which doesn’t happen often.

Of course, sunshine also helps with pain; a lot. I love the first warm day of the year, knowing my muscles and joints will calm down for a while and give me some respite. However there’s such a thing as too warm, and this is it. Lyrica and Celebrex don’t seem able to cope with the neck muscle spasms which too much heat brings; last night I was in agony, moody and sweaty and trying to move my head to the side with little success. My head pounded, and my jaw muscles ached every time I opened my mouth. This is the bad side of summer.

So, I’m holed up in my bedroom, drinking cold coffee and wasting time on the internet. My brain feels like it’s melted; fibro-fog ahoy.

I feel guilty. I’ve been invited to a going-away party for somebody I know online, through a local forum. We were supposed to be meeting at 1pm outside an ice-cream parlour in town, but as much as I’d like to, the combination of unexpected pain and fatigue (and general anxiety) have put paid to any plans. I’m too nervous. Too shy. Too self-aware of my weight and looks. Too hot. Too achey.

I could have admitted to that, but I lied. As I always do in these situations. I don’t know why I can’t just admit that I’m not up to socialising; it’s hardly the biggest crime in the world. I just feel ashamed, I suppose. I don’t want to seem weak. I don’t want to be the always-sickly one who never comes out because I’m constantly unwell. I just want to be normal sometimes, and refuse for normal reasons.

I feel so uncomfortable and restless today. Nothing can hold my attention. Sleep is tempting, but I don’t want to ruin the almost-normal sleeping pattern I’ve created since starting Lyrica. I have the first three seasons of ER to watch, but I don’t want to stare at the TV screen. I don’t want to read. I’m happy, but just feeling physically drained by the heat.

As always, the weekend was glorious. I don’t usually write much about my weekends with S; regular readers know we spend a lot of time doing the same things – playing computer games, cooking, reading together – and I don’t want to bore anybody with my relationship. However, this weekend was different. Firstly, I felt something I’ve never felt before. I don’t know what to call it – it’s not love, because I already feel that for S – and I don’t even know how to describe it.

We were lying together on his bed, naked and chatting about little things. His arm was draped over my waist, and our heads were touching, our faces almost totally squashed into each other. We do this a lot, usually after sex; S has never been one for just turning over and falling asleep or getting up to do something else. After sex, he holds me. Every single time. He cuddles me close and we talk. It’s fantastic; something I’ve never had before, and something I was convinced didn’t actually happen outside of Hollywood.

It was like a welling up in my chest. An explosion deep inside me, somewhere I never knew existed. As S’s hand stroked my back, something in me threw out this emotion, daring me to feel it. For the first time in my life, I let the emotion in. I let myself feel something otherwordly for somebody else. I refused to doubt it; and finally spoke my feelings out loud after months of keeping my mouth shut for fear of rejection.

“This may be soft as hell, but you’re the one person I can see spending the rest of my life with. Who I’d want to spend the rest of my life with”.

S settled his head on my shoulder, and I could feel his smile against my skin as he spoke to me:

“You’ll just have to wait ’til I ask you formally, then”.

Related articles

• My Progress 3 (backwards222.com)
• Pfizer halts late-stage study into new Lyrica use (sfgate.com)
• wellness conclusion (mbhealthystudents.wordpress.com)
• Sleeping Beauty (backwards222.com)
• Fibro Fog (the brain stealing part of Fibromyalgia) (dailylifewithfibromyalgia.com)
• Sir Terry Pratchett (judysp1.wordpress.com)
• The wonderful world of Terry Pratchett (judysp1.wordpress.com)

 

… and I’m feeling good.

I think the Lyrica has stabilised after the settling-down period. I’ve been taking it for two weeks now, and this morning I experienced a little pain; not enough to concern me, but it was noticeable. I’m seeing my GP in a couple of weeks, so I think I’ll have to ask for a higher dose – I’m taking 75mg twice a day, and he said there was a lot of room for raising the dose if I needed it – just to make sure I’m getting the best pain relief I can from it.

Lyrica has already been a blessing. Even on a low dose, the pain has reduced dramatically. My arms don’t ache anymore – and I can lift them above my head for the first time in years – and my thighs no longer feel like somebody’s stabbing them with a blunt spoon when I wake up. The anti-inflammatories are helping with the joint pain more than I expected; my fingers still hurt, but my wrists and ankles don’t feel weak and painful anymore.

Today’s a rest day. The sun’s shining outside, but I’m sitting on my bed, half-typing and half-watching television. The window’s wide open next to me, so I can enjoy the warmth and sunshine without having to sit on the uncomfortable bench in the garden. Yesterday, I sorted clothes to give to charity and helped around the house, clearing my extensive toiletries collection from the overcrowded bathroom and sorting things online for my mother. It’s the first time I’ve slept well on a Sunday night since I can remember – I always feel uncomfortable and alone when I come home from staying with S – and I got up early; around 8am. This morning, I got up even earlier, making a coffee at 7am and settling down to reply to emails. I slept for 11 straight hours last night, and woke up feeling properly awake and ready for the day; no nightmares, no going back to sleep, and no waking that I can remember.

It’s years since I’ve slept properly. It feels like a miracle.

Perhaps it’s all the weed I’ve been smoking recently, but I feel pretty blessed right now. Not in a religious way – I’m not about to suddenly find god – but just in the sense that I have plenty to feel good about right now. For over a decade my life has been a struggle – panic attacks, paranoia, failed relationships, lost friendships, life in the mental health system, unexplained diagnoses – and at this moment in time a lot of stuff is under control, or I’m at least trying. I never used to try; I just accepted my fate. Now… perhaps things can change.

I have S, who is the best boyfriend I’ve ever had by miles. I love him dearly, without jealousy or resentment. I trust him not to hurt me;  I’ve never trusted anybody else like that. He makes me happier than I ever thought I could feel, just by smiling at me. I’m far from a novice when it comes to relationships; I’ve been engaged, lived with partners, loved, hated and cried. I’ve had long-term relationships and short disasters. I was with the same person for four years. I know how love feels, and how relationships work… and I love S with all my heart. He’s amazing.

I have pain-relief. Finally, I have something which works. I’m no longer bed-bound for most of the week, and I’m starting to feel I could start achieving something again, after giving up entirely on any idea of a decent future.

Last year, I got my diagnosis of borderline personality disorder, after years of ruining relationships and acting in ways I didn’t understand or much like. In truth, I hated myself for lashing out and being so suspicious of everybody; I felt like an awful, obsessive person, one of those women who refuses to ever let a relationship go and boils bunnies in her spare time. Now I know why I react in that way, and I can work on fixing it. I’m already improving.

Finally, I’m really enjoying writing. Loving it. I feel like me again.
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