The fight never seems to end

Life is good. It is also equally bad. It’s strange to feel this way; things have always tended towards the negative, and so far my life has mostly been 95% bad, 5% good… and it hasn’t been rare to be trapped in a cycle of 0% good, unable to see anything positive either in the present or the future. Heck, there’s been a ridiculous number of times when I couldn’t even see a future.

The fibro flare is lifting, and I’ve been able to function pretty well today. Getting up at two pm wasn’t exactly the plan – I wanted to get up with S when he goes to work at eight am – but otherwise I achieved a few minor things. Washed up. Tidied a little. Swept the kitchen floor and emptied the bathroom bin. Had a shower, washed and dried my hair. I’m trying; as much as I find it difficult to see any real hope for the future at the moment, I am making a small effort to do the normal everyday things and occasionally interact with people other than S and my mother. Socialising has… become an issue. I’ve been wobbling with trust issues for months now, and I’m finding it incredibly difficult to allow myself to even speak to other people face-to-face. Every time I open my mouth, or type something online… I’m questioning whether I’ve said too much, given somebody ammunition. Logically, I know that mistrust is pretty unfounded, but since when did logic feature in my mind?

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www.techwench.com

It’s strange. I know my fears are unfounded, yet I can’t help feeling persecuted in some way. My awareness of what’s BPD and what’s me is becoming more clear, and I can see the profound differences between my normal personality and the borderline part of who I am. Although I know these feelings are entirely caused by BPD, there’s still part of my mind which refuses to let me look at the situation rationally and comfort myself. I no longer fly into uncontrollable panics over absolutely nothing, but I know those freak-outs are just sitting under the surface, and sometimes they feel so horribly close that I can’t bear it. I’ve let them creep in lately; convincing myself that S will leave, that I’ll do or say something stupid, that I’m not pretty enough or thin enough to have such a wonderful boyfriend. That people are whispering behind my back. Hating me for reasons I can’t quite pinpoint.

I’m taking my medication, but I’m not convinced it’s working that well; although Cipralex had problems towards the end, Duloxetine just doesn’t seem to have that ability to take away all the nasty things I can’t cope with.

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simplysara.me

I suppose I just feel frustrated now. I’ve come so far, and there are still hurdles. I was once naive enough to think that life would get easier one day but now I wonder if that’s just a myth; if the whole thing isn’t a lie.

I mean, I’m happy. I am. For the first time in my entire life I can say I’m genuinely happy. I just don’t like knowing the fight never seems to end.

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It will be sunny one day

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Image from Crystal

This is yesterday

I’ve been trying to write a post for the past week or so, with no success. Many have been written in my head – as I’m tossing and turning in bed next to S, trying to sleep through another fibro flare – but when it comes to making myself sit down at the little Ikea table in the kitchen and get those thought out onto the screen, I just can’t do it. So much has changed recently, and my mind is in a constant state of bemused flux; after years – decades- of absolutely everything being out of my control it’s near-on impossible to get my head around it all. I expected it to be difficult, but I don’t think this level of confusion was anything predictable. The excitement of finally standing up on my own feet masked it all for a little while, but now that things are settling a little and a routine of sorts is being established, those little niggles and worries are seeping back. Minor issues. Small things. Nothing important, and nothing which can stop the happiness I still feel at finally being free, but enough to remind me that I can make as many changes as I want and fight as hard as I can but it’ll never be easy.

Which is why I’m taking yet another big step and – against every fiber of my being – have made an appointment to see a new psychiatrist, almost two years after my last very brief foray back into the mental health system.
Like everything, I did mean to write something about that decision last week, and it was briefly mentioned in reply to a couple of comments on my last post, but – again, like everything else – I’ve been putting it off. I’ve always been open of my mistrust surrounding the UK mental health system; past experience has taught me nothing to convince me it’s worth feeling otherwise. While going back on the staunchest of decisions and beliefs is a classic symptom of BPD, I’m pretty convinced that isn’t the case this time. I sat on the decision for months, considering the options available and finally coming to the conclusion that if I want this to last – this normality I’ve found – I can’t go it alone, and although S is beyond wonderful and living together has boosted my self-esteem a lot, there’s still only so much I can speak to him about. I trust him implicitly  but I’ve spent enough of my life being a burden on others and I’m constantly aware that I can’t spend our relationship putting pressure on S to care for me.

The appointment isn’t just about that, though. It’s about everything. Every last little thing since that day in early puberty when something snapped inside my mind.

Over the years, all the things I’ve experienced have fragmented into a thousand threads of craziness. All match yet… don’t quite fit together. The ends are frayed and loose, tangled around each other in a huge knot of confusion. For a long time it was easy to accept that would never change and I would spend my whole life walking around with voices in my head and the inability to stick with anything worthwhile without sabotaging it. Comfort – even terrifying comfort – can be hard to leave behind. I’ve made so many mistakes; walked away from hundreds of chances to better my life, slept around in the vain hope of finding somebody who took all the pain away, thrown pills down my throat just so I wouldn’t have to feel, denied myself even life’s very simplest pleasures for no discernible reason at all. I’ve walked away from treatment. Fought against everybody who tried to help, convinced they were all part of the problem and could never be the solution.

It wasn’t an easy decision to make; not in the least. I’ve been in and out of the mental health system – more in than out, especially in my teens – more times than I care to count, and so far there’s been very little positive gleaned from the experience. My mother, she calls it damage. She says she sees the damage years of questions and let-downs and tablets and therapy has caused; can see it in my face. In my eyes. In the way I react whenever the system is mentioned.

In truth, it scares me. The thought of sitting on yet another cheap NHS-issue chair opposite a psychiatrist who knows nothing of the more subtle details… it’s terrifying. I’ve come so far, and I’m painfully aware that the slightest thing can bring my world crashing down like it always has before. Despite appearances I’ve never been strong – not in the least – and yet another failure is something I simply can’t afford anymore. Life now… I know I keep saying it, but it’s changed and I confess to being tired of change. As wonderful as everything is living with S, I want to stay here for a while. In this place. Where everything makes sense for once. I don’t want to make big plans, or look too far into the future. I just want this. Now. Here. Safety.

Yet, change has to happen.

I’m stubborn; and I’m still not quite ready to give into the crazy.

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.

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.

When the past gives me no comfort

Despite my attempts at being entirely honest and bare in this blog, I do hold back. I assume everybody does, to some extent, even in their most secret of diaries. You see, twenty seven years of life is a lot to fit into just over a year’s worth of writing.

At first, I thought running out of things to say and confessions to admit would happen quite quickly. After all, I haven’t lived for that long; most still seem to consider me a child, barely out of my teens. It seems that even after you grow up and become an adult, there will always be somebody older ready to condescend your problems by mentioning how much more experienced they are. However, thousands of words later, I’m beginning to realise I can’t possibly tell my story in such a short time and, if anything, I’m only just admitting to the tip of the iceberg.

Something I’ve learned about writing such a personal blog – which involves sensitive subjects – is that I have to be feeling in the right frame of mind to speak about certain things. Sometimes I have to be angry; I write best about self-harm when I’m furious. Others, I have to be bordering on falling back into the depression pit. Some things… I am never in the right frame of mind.

 

Like tonight. I would much rather curl up in a ball on my bed and smoke dope and watch E.R until the sun comes up, than write about all the anxiety which has been plaguing me. I’d much prefer distracting myself with pointless games than admitting to finding it really fucking hard not starving myself every time I try to lose just a little weight.  And I’m forcing myself to write because I know that if I don’t, I’ll keep doing it. If I don’t have to hold myself accountable, then what’s the harm in letting myself cut a few hundred calories a day, until I’m only eating half an apple and two carrot sticks? At least then less people would judge me. I wouldn’t have to worry about not being taken seriously anymore, because when I was thin… I felt better. I just felt better. More confident. People listened to me more. I wasn’t just a fat loser with a walking stick and too many piercings.

I’m tired, but I don’t want to sleep. I also don’t want to talk about the voices.

They’re not voices; not really. They’re more like obtrusive thoughts which feel like they come from a different brain. They barge in with suggestions and hints, and are impossible to shut up once they get going. Until a few years ago I believed they were entirely valid thoughts, and acted on them. After years of fucking up and putting myself in dangerous situations… I learned – through lots of self-therapy and even more medication – that they’re not my real thoughts. That’s all well and good, but it doesn’t mean I can ignore them. They shout. Loudly. Demand my attention. Grab onto my brain stem and refuse to let go.

I wish I could explain the things they say, but it’s difficult to put into words. It’s bitter and spiteful stuff; reminders of my failings and every single time I said something wrong. They’re the ones who say that everybody in a room is looking at me, and that everybody I know is just pretending to like me out of pity. When I’m holding the lit cigarette in my hand and feeling helpless, they’re the ones who are shouting at me to press it into my arm. They’re the ones who twisted everything; who convinced me that I had enemies in friends and that others were out to hurt me. They made it all sound so real, and they still do. I just know they’re not a part of me now. Not a healthy part anyway.

I don’t know what I’m trying to say here. That I’m tired and need sleep, probably.

Support

I wasn’t sure what I expected from blogging about my life.  When I began copying entries from my old diary online, I didn’t really know what I was hoping to achieve; in my introduction I wrote how this blog is personal therapy, but back when I started over a year ago… I wasn’t even sure if I’d delete the few posts and forget about the whole thing. I’ve never spoken about my other blog; one I started writing a few years ago. It’s just a collection of my poetry, and I never plan to pass the link on to anybody.

The thing I really didn’t expect was to develop a support network. I’ve always wondered exactly what “support network” means; I read about it in books about getting over depression and eating disorder recovery, but the idea seemed pretty unrealistic to me. Never having had many friends, I’ve always relied on the mental health system and my family to support me. The system let me down, and my family did their best but didn’t understand what I needed. The only support group I ever went to was a total disaster; I disliked everyone there. They were loud and unstable and I had nothing in common with anybody.

However, one thing which has emerged from my writing is a support network of sorts. Reading through the comments on my last post, I realise that I finally have something I’ve needed for a long time; people willing to back me up, trying to advise me on which way to turn, or just saying they’re there for me. Just being involved in some way, with no reason to be other than they want to.

Some may say that relationships online can never be as meaningful as relationships in real life. In many ways I’d agree with that; all my life I’ve needed to be able to see a person to know what they’re thinking, and because trust is such a huge issue I find communicating without seeing the other person quite nerve-wracking; I can never quite trust somebody without looking them in the eye.

After reading those comments, I know I’ve done the right thing by writing about my life. Thank you.