Well, the clock says it’s time to close now

Most of my day is spent in the kitchen.

Neither small nor large, as kitchens go. Somewhere in the middle, I suppose. Fake granite worktops, off-white cupboard doors. A fridge freezer with cracked drawers, a temperamental oven, an even more temperamental hob and, washing machine, all of which which came with the flat. Sage-green dish drainer. A large whiteboard, usually covered in S’s drawings of circuits and my lists of things to remember. Slow cooker and microwave, both donated by my mother. A set of John Lewis pans from my sister, W. Coffee machine from S’s sister.

The lino floor is warped and torn from a combination of a flood in the flat above, our cupboards full of food falling off the wall and smashing a few nights later, and the sheer length of time I’ve sat in this chair since we moved in.

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If socialising happens (which is less and less… again) it’s nearly always in the kitchen. Not everybody likes it; the curved IKEA chairs take some getting used to and there’s no heating. The window is usually open to counter the smell of smoke. I enjoy it here though, and it feels… safer, somehow, to keep people in one area without giving them the run of the flat. Still in the grip of agoraphobia, my home is very much my castle.

Never in my life did I think I’d find the sound of a washing machine soothing. There’s a domesticity about it I’ve never really felt before. Pairing up S’s socks and hanging up his work shirts gives me a sense of peace which would greatly embarrass my rebellious teenage self. It gives me a routine; something which has been lacking for a long time. Feed the cats in the morning, regardless of how I feel. Let Stimpy out. Let Stimpy back in. Give attention to Stimpy. Sympathise with Magrat for being his sister.

Getting to the shop is still difficult. It’s bizarre; I can go into town with my mother, but I can’t walk two minutes down the road to buy milk. I want to try today, and there’s really no reason not to, but despite all the reassurance of CBT and my therapists… eh. I should phone my mother, but a large part of me would like to hide away for a little while. It’s not right to give in, but it’s as though I never learned how not to and any lessons seem to bypass me entirely.

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So I sit at the dark wooden curved table in the kitchen, listening to the washing machine sloshing S’s jeans around and the wind blowing outside. The police helicopter has been out all morning, occasionally passing overhead. An unexpected chest infection is finally clearing and I can taste my coffee for the first time in weeks, smell the Yankee candle burning on the work top. Part way through typing this, I talked myself into phoning my mother, who said we could go out tomorrow instead; the relief is pretty strong. I’d still like to go to the shop, but I’m undecided whether it’s worth getting dressed to walk to the front door and turn around again.

This is how it is. In my pyjamas, in the kitchen. The sound of Stimpy shoveling Felix into his never-ending stomach. Socks covered in sheep, proclaiming ‘I love ewe’ in the worst font choice ever made. Clean hair; a shower two days on the run (no mean feat nowadays) and chapped lips which no amount of Blitzex will help. A fresh cup of coffee; no sugar.

A few plates and glasses sit in the sink. It’s a good one; deep and wide, although the drain often blocks outside with noodles from another flat’s kitchen and S has to clear it with as little retching as possible. The window behind the sink overlooks a dark red brick residential care home where staff often stand by the side exit door and chat loudly below our open window, which can be either entertaining or fury-inducing depending on the topic of conversation and the shrillness of the voice in question.

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This time last year there were red and gold baubles hanging from the spice shelves, tinsel around the cupboards, ingredients for mince pies, drinks cupboard stocked with vodka and red wine (none for me, but I don’t mind that so much now) and a fridge filled with dips, cheeses, trifles, cream, packs of vegetable samosas and garlic mushrooms. However, this year we’ve decided to have a quiet Christmas. Usually S’s family, Z and her fiancé and a few others come to visit over the holidays, but so far this time our only nod to the festive season are some fairy lights strung around the mantelpiece in the living room and a small paper chain. I don’t think either of us have the will or the energy to make a fuss, and despite my love of decorating the flat I’m actually looking forward to just doing our thing. We’ve never had a Christmas purely to ourselves since moving in, and although I’ll miss seeing S’s family (my mother is staying with my sister, E, for the day) and even though I know people are bound to pop in… it’s nice to think of just being together at Christmas with no interruptions.

Smokers outside the hospital doors

Finally, after two years of hospitals, clinics, GP surgeries, waiting rooms, needles, tests, being weighed, being measured, having my blood pressure taken, having my blood taken, of needing diaries to keep track of all the different dates and times and locations… finally there’s a reprieve, and it feels good.

My rheumatologist has agreed to allow six blissful whole months between check-ups, sometime earlyish next year the blood tests can (hopefully, assuming nothing changes dramatically again, which it has done a few times) be done every three months. My GP is also in the process of trying me on monthly – rather than fortnightly – appointments.

Therapy still happens once a week, and I’m waiting to have a molar removed and some fillings done, along with other dental work, but things feel quieter.

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In a strange way, getting ill has been a blessing. I can’t remember when the relationship between my mother and I turned to fighting – probably as I approached puberty, when everything else seemed to fall apart – but knowing it’s ended is a wonderful feeling. We still bicker; we’re very alike and both very stubborn. I still fly off the handle on the odd occasion when everything becomes too much. She deals with it pretty well now, and on the whole we’re close.

It’s an odd feeling, finally being the sort of close to my own mother where she can link my arm and I don’t pull away from being touched, and I will confide in her about some incredibly personal things from the past without worrying about being judged. I’ve learned she won’t, now. Sometimes, I juggle with the idea of telling her about that thing – she occasionally says she wonders what the cause of BPD was as I wasn’t abused and it’s horribly common to find abuse in a BPD’s past – but the time is never quite right to begin that conversation.

Therapy is a struggle. I used to think my teenage obsession with psychology articles, books, and a couple of college courses was enough to make any therapy a breeze, but then I never responded to it before. It’s a mixture of CBT and DBT, with immersion therapy, and my current task (tasks are set every week) is to go for a walk alone.

There was a time not so long ago where I’d scoff at the idea of not being able to do that; I spent most of my life out walking alone, either along the embankment near my mother’s house, through the park into town, or just around my stomping ground. Now, however… I’m finding it incredibly difficult to step outside. Again.

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Going outside if I’m meeting my mother isn’t too difficult, so long as I can get a taxi. Buses are out. Going out with S is difficult, and it’s never far from my mind that this introverted, reclusive, hermit of a girl is very different from the woman he met years ago in a pub on a whim. He’s been incredibly patient and I’m thankful as hell for that, because I don’t know if I could have got this far without him.

For somebody who is terrified of being outdoors, I spend most of my time thinking about all the things I miss about the outside. Autumn leaves. Friendly dogs. Different smells. Trees. Buildings. I miss looking at things, seeing new stuff instead of the same walls. I adore these walls, but I dearly miss seeing the grassy hills of the local park covered in pastel-coloured tulips in the spring, and being able to walk into a shop without fear of making eye contact.

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On a weekend I wanna wish it all away, yeah.

Day one of no prednisolone has been a small disaster. With most drugs, the effects stay in your system for a little while, but my experience with steroids has been very different; the day after the final dose is taken, everything returns. It’s what happened with the rash on my hands and feet. Less than 24 hours and I was covered again. So it’s no real surprise that today revolved around a renewed pain and stiffness – especially stiffness. I’d forgotten how limiting it can be.

I’ve been sleeping in the spare room recently, and last night was no different. There are a number of factors as to why – the air is cooler in there, the little white single bed has an orthopedic mattress, I feel safe surrounded by “my things” (it’s almost a copy of my old bedroom at my mother’s house; entirely subconscious on my part but it does give me a recognisable haven to retreat to) and I also feel safe knowing the only person to witness the pain is myself. After all, just because it now has a name and a reason, doesn’t mean I’m not still somewhat ashamed to be seen squirming around like a wounded animal. I feel horribly like a burden when S hears me complaining, so I try to limit how often I open my mouth on the subject. It’s difficult. On days such as today it envelopes my entire being.

 

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So. S and I have lived in the flat for almost a year now. Crazy how time passes in such strange ways. The last twelve months have been some of the hardest of my life, yet I got through it somehow. I confess to having no idea how that happened, as I’ve been stuck behind walls of varying painkillers, watching the world go by. As it is, the morphine is doing very little for the ankle pain – the discomfort and stabbing feelings seem to come from inflammation, and it’s only going to get worse now I’m off the prednisolone. I can’t take NSAIDs either. My mother is going to speak to my rhuematology nurse next week to see if there’s anything at all they can do before I see the consultant in October.

I’m just not convinced I can keep doing this. Waves of pain. Brief relief, then it all comes back, worse than ever.

I’m feeling a little despondent.

It could have been a brilliant career

It seems keeping up with writing isn’t something I’m very good at now. I’m not sure I understand it; the time is there, but it all seems like such a chore. It feels a little unfair saying that since this blog has been a lifesaver for me on more than one occasion, but the days of typing thousands of words regularly seem to have disappeared. Perhaps it’s simply a lack of concentration – my GP has doubled the prescription of slow-release morphine and it’s a knockout dose, even for me.

However, I do feel like writing a little tonight, if only to distract from the nagging coming from the Infamous Ankle. The prednisolone course finished yesterday; it hasn’t been particularly effective for a couple of weeks now, since the dose reduced to one a day, but I’m still worried what the next few days will bring. The morphine helps but only does so much, as the pain appears to be coming from the actual inflammation of the tendons. I now know that’s a normal symptom of psoriatic arthritis, and I’m feeling slightly bitter that there were so many signs of this over the past two years. So many signs. They could have had me on steroids earlier. The prednisolone exceeded all expectations on the higher dose and I was able to walk almost normally and my sleeping patterns improved hugely. For the first time in years I was able to see my ankle bone, and my shoes fit properly. The joy on the first day I could walk to the local shop was… well, I was very, very happy. S and I even took a walk around the block, as I haven’t been able to do that once since we moved in almost a year ago. I missed a lot, all because the doctors missed everything.

Still… can I afford to be bitter? Probably not. I’m going to be stressed enough with the inevitable return of the ankle swelling without piling more problems on top.

 

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I also finished the methotrexate course last week. That drug has been a… nightmare. A pure case of the cure being worse than the illness. I’ve been repeatedly asking everybody why I’m putting myself through the side effects – vomiting, constant nausea, sweating like a pig, sleeplessness, mania – even though I know it was my choice. I didn’t rush into taking MTX; I considered it over a week while I waited for x-ray and blood results to check I was able to take it in the first place. I considered it incredibly carefully.  In all my years of medications, I’ve never taken such a dangerous drug and it was a difficult decision. Still… I think I made the right one. If it slows the progression of the disease, surely it’ll be worth all the sleepless, sweaty nights with a bucket by my side and a helping of paranoia?

I hope so. Strangely, I feel even worse for not taking it this week. I just hope this isn’t a sign of things to come.

My bed feels larger than when I was small

 

I’m tired of struggling through every day. Of pushing and pulling and forcing myself to at least seem okay. I’m tired of speaking and having the words come out jumbled before they can even leave my mouth. Of sleeping only when beyond exhaustion. Of making excuses. Of seeing the sunrise every single morning, having been awake all night. Of not being able to find a single bit of beauty in it.

Today, I broke all my personal promises and posted my feelings on Facebook. Oh, not the big stuff – that’s for here only – but I went into far more detail than I’ve ever felt comfortable with, and I’m still not comfortable with it now. I only did it because I can’t take unrealistic expectations anymore; I have never, ever been able to cope with being expected to act a certain way and, truthfully, I’m sick of pretending.

I was pulling myself out of it, with the help of antidepressants which have been proven to work for me. I was trying really goddamn hard, and I was almost there. I’d started eating normally again, and having showers. Things seemed to be on the up emotionally, even if they weren’t so great physically.

Then… just one little thing. That’s all it takes.

I don’t even know what that little thing was. All I know is I’m sitting on the sofa after leaving S in bed. I cried all day. I realised I just can’t take this. Everything. The pain. The sickness. The tiredness. Any of it.

 

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I’ve been vomiting again, and the conclusion my mother and I came to is that it’s stress. Truthfully, I accepted this explanation because the idea of facing just one more doctor is too much to bear. I’ve thought about it throughout the day though, and I realise it’s probably true; even on days when I don’t feel like a total emotional wreck, I’m still terrified of what will become of me, and it’s like a ball of pure acid in my stomach to even consider the future.

Can I even see a future for myself?

Not really.

I’m relying on those closest to me – my mother, S, and a couple of people I’ve come to call friends – to keep me afloat, because if left to my own devices I begin to sink almost instantly. I can no longer talk to Z about any of this; it became apparent a while ago that we’re probably never going to be on the same page when it comes to life.

Just like last time, the vomiting has kicked off feelings I’d rather not have; feelings of calorie counting and tape measures. Truthfully I hardly need to worry about such things since eating has become incredibly difficult with the constant nausea and risk of sudden projectile sickness, but something inside decided to worry about it anyway. I’ve lost a lot of weight without even trying over the past few months, and you’d think I’d be ecstatic but instead I almost feel cheated because I didn’t do it myself. So, yet again, I grab for control.

I don’t even believe my own lies about having control anymore. I know nothing I do gives me the slightest safety.

 

So why don’t you slide

Earlier, S asked if I fancied a takeaway – curry from our favourite restaurant – and I agreed. Later he went out with a friend to buy some tools. They’re working on the basement beneath our flat, as technically that’s included in the rent. It’s currently filled with the last owner’s belongings; stacks and stacks of paintings, canvas, frames, lamps, chairs, books… Bob was a hoarder, and a painter. His work’s pretty good actually. Now he’s dead and his wife is in a nursing home (she went downhill very rapidly when he died), somebody has to clear it all. The basement is pretty big, taking up most of the floor space of the house, so it’s a mammoth task.

Anyway, while they were out I got a call from S. He asked me if I wanted to go to the restaurant with his mates instead of getting a takeaway.

Did I do the right thing when I said, “it’s okay, I’m not up to it. You can go along anyway”?

I wasn’t lying. I’m truly not up to it. I tried going for a short walk earlier, and by the time I returned, I was struggling to breathe and sweating like crazy. It’s been so long since I’ve had ‘proper’ exercise. That walk used to take me five minutes. Today, it took thirty.

Straight away S’s tone changed; the first time I’ve ever really heard it do so. He said, “oh. Okay. But we were going to have a takeaway.”

I shrugged him off, “it’s fine, I’m really, really not up to it. We can do it another time”.

He agreed, but… he didn’t sound happy. It’s only when I ended the call that I began to feel that familiar twinge of panic.

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Oh god. Oh god oh god oh god you fucking idiot oh god oh god.

I have never once done something (to my knowledge, anyway) to make S angry or disappointed. Unlike my relationship with O, I’ve managed to keep my irrational emotions in check; at least until I’m alone. I’m so determined not to fuck this up. I know it’s classic BPD to say, “oh, I love him so much, he’s my everything, I want to be with him forever” but all that’s got me in the past is a string of disastrous relationships and far too much bitterness. I almost have my head around that now, and the medication certainly helps me keep the more extreme aspects of my behavior in check. So while I know that these feeling might be BPD tricking me and that mental illness has a habit of making me cling to somebody like fuck… I want to believe this is real. I’m pretty sure I know, deep down, I love S with all my heart; how could I not? He’s the only man who has never condescended me. Who has never given me reason to suspect him of wrongdoing. The only man who I’ve felt comfortable enough with to let the mask slip.

I know I love him.

And now I’m scared.

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So what did I do? I went straight for the Tramadol.

I’m now sitting at the kitchen table, trying and failing to calm myself with a joint. The urge to crawl into bed and hide under the duvet is overwhelming.

“Well, I had no confidence in my ability to dent another human’s life”

Sometimes it’s impossible to even think of a title to a post, let alone which words to use. Being stoned doesn’t help, but it’s the only way I’ve been able to cope today; it was either dope, or masses of co-codamol and a bout of self-harm. I figured weed was the safest option.

Where to begin? It’s past 2am, and I’m still furious from the orthopaedics appointment this morning. As usual, nothing was achieved – my consultant wasn’t even there, and I saw a junior doctor instead, who couldn’t do anything except repeat what I’d already been told at my previous appointment – and I’m furious. I’ve had enough. This officially isn’t fair, and I’ve stood back and let this happen over and over because I haven’t wanted to cause any problems.

Well, fuck that. I’ve been in constant agonising pain for over eighteen months. I can’t walk properly and need a stick most of the time. Ice? I can’t leave the flat if it’s even slightly icy, because I have no balance. I can’t sleep. I can’t exercise. It’s all I can think about, and even strong painkillers (which I’m doing my best to avoid, for obvious reasons) only take the edge off slightly. I’d gladly take back the colocystitis pain over the constant needles and cramps in my foot.

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I got home, and cried. Smoked a joint and ranted to myself for a while. Mentally calculated everything in the flat I could possibly hurt myself with. Considered making myself sick. Ate half an egg sandwich then threw it out. As it is, I haven’t eaten since; I’m hungry, but the gnawing feeling in my stomach is comforting. It’s… control.

I feel very out of control.

Since S came home from work, he’s been cheering me up immensely; so I’m coping okay. I haven’t taken any codeine, or hurt myself. Oh, the urge was there – I thought about it the whole taxi ride home – but you see… if I hurt myself, I hurt S too. It’s strange for me to feel that way, because in past relationships I’ve never truly accepted that my tendency to damage myself could have any effect on my boyfriend. It wasn’t that I was being selfish, it’s just… well, I had no confidence in my ability to dent another human’s life.

I don’t want to hurt S. He’s my world. I know I can’t care about myself, but I adore S. I assume that much is obvious from my past posts.

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I’ve been thinking a lot about where I go from here, and I believe my only option is to put in a formal complaint of medical negligence. As much as I’m tired of fights… I refuse to go on being treated this way. From the first time I saw a consultant for PCOS, right through to today, I’ve had sub-standard medical treatment and every single condition I have has been made worse by lack of action and misdiagnosis. I don’t think any of this is fair, and I’ve got to stand  up for myself at some point.