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Got me on some medication

As of Friday, I’m back on the methotrexate/folic acid. I can’t say I’m looking forward to the side-effects again, and the thought of going back to spending the weekend wrapped in a blanket, simultaneously freezing cold and boiling hot, fighting down nausea and being more fluffy-headed thinking than usual is bringing me down. There’s already been so much sickness.

But what can I do? I made the decision to take the drugs.

 
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Posted by on August 29, 2013 in Every day life

 

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So I’ll start a revolution from my bed

There is absolutely no point in forcing yourself to write a personal blog if you have more important things to worry about, and those worries have been the reason behind the long absence between posts. I have missed this blog dearly; although I knew it was helping me I didn’t realise quite how much until writer’s block hit and life got somewhat in the way. That’s not to say I haven’t had time – I’ve had plenty, more than I can begin to visualise – but that time has been taken up with difficult sleeping habits, medicine regimes, appointments, depression… I’ve experienced the full range of, well, everything recently.

Seronegative symmetrical psoriatic arthritis. Somehow, even the name sounds complicated.

Throughout the past couple of years I’ve often wondered how I would feel if it did all turn out to be real. For even though I’ve had very clear physical symptoms and (eventually) positive X-rays and an MRI, there has always been a small voice in my head saying, “but you lie. You always lie”. All the doctors who wouldn’t listen and the people who suggested it may just be overreaction on my  part… they were wrong, and I was right. It’s a strange feeling for somebody who isn’t used to being right.

 

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Now feels like the right time to begin writing again. A month after my diagnosis, and I’m just about beginning to pull things together. There’s a lot to concentrate on – I’ve been put back on steroids (Prednisolone, this time) and have also been put on a course of Methotrexate, along with Fentanyl patches (which refuse to stick in this heatwave but otherwise they’ve been fantastic at dealing with the ankle pain) and codeine still if I need it. I have varying specialists dealing with my case, a nurse, and am also attending a pain clinic for physiotherapy, counselling and relaxation, as well as any medications/pain relief if needed. Everybody has been lovely, from the rheumatologist who diagnosed me to the occupational therapist I saw on Friday morning. The difference from simply changing hospitals has been enormous, and I’m so thankful to my GP for understanding why I no longer had any faith in our hospital. The time from first seeing the new rheumatology team to diagnosis was two months. My local hospital achieved nothing except further damage in over two whole years, all because they never scanned me.

I haven’t quite accepted the diagnosis yet; I suspect it’ll take while. Although I knew something was wrong and even though I considered inflammatory arthritis as a possibility for a long time, nothing quite feels real yet. However, I don’t feel the sense of hopelessness which has dogged me for months and months; a weight has definitely lifted, even if newer weights have been added at the same time.

I am trying not to look at the past year as a waste, but I must confess to feeling resentful; I spent a year unable to walk without extreme pain – and, over recent months, have been unable to walk at all and have spent my days indoors relying on crutches to get to the toilet) – and I do feel cheated. All it would have taken was an MRI. All they had to do was listen to my history. They didn’t though, and as a consequence I have lost a year of my life to pain.

It’s hard to know where to start rebuilding.

 

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Posted by on July 21, 2013 in Every day life

 

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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.

scared-woman

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.

 
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Posted by on April 1, 2013 in Every day life

 

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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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Posted by on February 13, 2013 in Every day life

 

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Unspoken

Sitting together and so far apart,
a thousand words unsaid and truths unspoken,
I never felt more alone, more out of place,
as I do tonight,
sitting by your side.

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A bottle in my hand and a cigarette in yours,
I open my mouth but no words will form,
it all seems so trivial when I feel this broken,
when you’re sitting so close to me,
yet not here at all.

(c)

Writing about 2008 is more difficult than I ever imagined. On one hand, I almost feel uncomfortable writing about my past relationships now that I’ve been with S for eighteen months; I know he probably wouldn’t mind, but it must be weird for him to know I’m writing about my exes. On the other hand, it’s only now that I can see just how low I sunk; I knew I was falling apart but what I didn’t realise is that I’d totally cracked long before it got to this point. I can see that now. It’s difficult to think about. I acted in ways I’m not proud of and damaged my body god knows how much with handfuls of amitriptyline, tramadol, diazepam, co-codamol, small antidepressant overdoses to get me through the night in a dazed drug-fuelled stupor instead of having to deal with the reality of everything in my life going incredibly wrong. 

O and I… we stopped speaking one day. Conversation turned to bitter arguments and shouting matches. Slammed doors and a smashed laptop. Midnight chases down the street; it was always me doing the running. I just couldn’t face any of it. 

I remember sitting on his swivel office chair, gulping from a bottle of cheap peach schnapps and watching him smoke cigarette after cigarette, sitting on his bed and brooding. He threw me out that night. 

Of course, we got back together. We did a lot of getting back together. 

 
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Posted by on January 7, 2013 in Every day life, Poetry

 

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I always find someone to bruise and leave behind: the personality of BPD

Trying to access my blog has been a nightmare today; it’s almost as if I’m being punished for putting off writing. I sit in the living room or the kitchen, staring at my laptop and willing the words to be there, but they just aren’t – I don’t particularly want to think about the negative side of things at the moment – and not being able to log in to my account all day has driven me half-crazy. Finally, I have the words… and the fear that I will never get my blog back. Similar issues have been had across WordPress according to their support forums, and my natural cynicism makes me wonder if they’ll ever fix it, or if I’ll be in blog limbo for the rest of my life, unable to download my content or ever update. It’s frustrating.

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I’m going to write anyway, because I received email notification of a comment from one of my old posts – Borderline Personality Disorder – and although I try not to put too much pressure on myself to respond to negativity, it was too tempting to reply, rather than let it go.

I can’t stand people with BPD!!!!!!!!, My soon to be ex-wife has ruined or should I say destroyed everything i built for the last 21 years. I’m retired military, she put me into 25k debt, sold my retirement gift (1972 Plymouth duster), took money from me, calls, texts, emails, hoovers, threatens, plays the victim, has filed PFA’S on me to hide her lies, told a judge she tried to commit suicide 3 times, told that crap to my youngest daughter, lied about 6 surgeries, accused me of killing the dogs when she had possession of the dogs, sold items of mine, harassed county attorney, hide my cell and car keys, twice told my daughter she doesn’t want to be her mom, called and emailed my family members about our sex live, hates my other kids, took all parental rights away from me with her son while we were leaving together, called child protective services on me for child abuse, lied about receiving taxes (my taxes 3.5k) and spent it all, gave her 4k for my daughter’s ortho and she never paid it, keeps getting into my retirement account and changing crap (it’s a federal crime!), every three days would be arguments until i apologized or caved……and so much more……..you people with BPD SHOULD ONLY BE ALOUD TO MARRY EACH OTHER!!!!!! The total destructiveness you bring into peoples/family/loved ones lives is just criminal!!!! Now I have to pick up the pieces; my daughter cuts herself, oldest daughter is on depression meds, claim bankruptcy, and start all over again age the age of 44. You BPD!!!! should never be allowed to date/marry/have kids……I feel so sorry and sick to my heart for all of your next victims…..GOD help them so they won’t be put through this hell I’m going through.

Wow. Where to begin.

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It’s difficult not to take such opinions personally when somebody says that the likes of myself and many of my readers should never be able to date, marry, or have children. Attempting not to take such comments to heart is nigh-on impossible. Those like myself already live with ridiculously low self-confidence and constant snipes from society and the media, without being told these things in shouty capital letters on a blog which – I like to think, judging by many comments I’ve received – has become a safe place to discuss issues like BPD and mental illness without being judged. Although I know there’s no way to stop such comments – and I wouldn’t want to, as everyone is entitled to an opinion – I don’t like to respond to them, as it makes me feel like a victim. The very act of explaining why I behave the way I do gives more ammunition, and I’m not always sure it’s possible to change somebody’s mind on mental illness when their beliefs are so set in stone.

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I will be the first to say that living with someone suffering from BPD must be a nightmare if they are experiencing the fully-fledged out-of-control side of BPD. If they refuse to take their medication, won’t or can’t accept help, or have attempted to get help but the system and/or friends and family have let them down, as is so common with borderline personality disorder. I will never deny that my past behaviour has been controlling and has caused pain to those around me; to lie about that would be to lie about my entire life from puberty onwards.

However, that controlling behaviour has never been out of malice, or acted out with any intent to hurt or cause distress. Describing the BPD mind is an impossible task; but, like everyone else, we have our own distinct personalities. Although outwardly we may appear incredibly bitter and resentful, hell-bent on causing mayhem wherever we go without a single thought for the consequences, inwardly can be an entirely different story. Inside there could be somebody who simply has no control over their actions, and who is lashing out because it’s the only way they know how. It may not be the right way, but it’s their way, and it’s the only thing they have at that moment because their entire being is consumed by all-enveloping fear.

BPD is not a free license to abuse people; when I was first diagnosed, I noticed a lot of resentment around the internet regarding relationships with BPD’ers, and their ability to destroy everything within sight; emotions, furniture, families, friendships, affairs… to the non-BPD partner it seems that everything their boyfriend/girlfriend touches turns to shit. That they get off on controlling others, and seek attention at every available opportunity.

This is a myth.

I have never, ever enjoyed having BPD. Since my symptoms started in puberty, my life has been an uphill struggle to find some form of sane balance. To connect with others without clinging to them. To know who I am, and why I think the way I do. It’s been hard; heartbreaking at times, and a nightmare for everybody around me. I’ve sprinted through life like a whirlwind, grabbing onto others for safety and leaving chaos in my wake. I’ve said and done terrible things. Threatened to harm myself when I had no intention. Lied. Cheated. Stolen. Caused undeniable pain and, yes, abused others.

Of this, I will never be proud.

However, I have made every effort to change, and gain control over the tangle of self-abuse and denial. Comments like the one I quoted above, and many I have read online, seem to suggest that abandoning those with BPD is the only solution. When I was first diagnosed, my mother bought Stop Walking On Eggshells by Paul T. Mason and Randi Kreger. After she read it, her suggestion to me was that I didn’t look at the book, as there were heavy hints that walking away from somebody suffering from BPD is an easy option. I haven’t read the book myself, so she may have been exaggerating, but it wouldn’t surprise me. BPD is a mental illness like any other, but it seems acceptable to cast suffers off with “they’re a cruel person” or “it’s not worth it”. Or, as above, suggest that we should never marry or even date.

I have worked hard to get this far. I’m twenty-eight in ten days, and there was a time when reaching eighteen seemed impossible. Admittedly, I find it difficult to recognise any achievement, but I know my life is massively different to how it used to be. Medication has the anxiety and panic attacks mostly under control, and stops me going too far into depression. Without the anxiety, I don’t overreact, I don’t convince myself that everybody I love despises me. I don’t believe that the world would be a better place if I were dead.

So, people with BPD can change. They can grasp some control, if they work at it. We’re not hopeless cases.

I called this post “the personality of BPD”, because the comment above angered me. It totally disregarded any of his partner’s personality, and attributed all her behaviour to borderline personality disorder. Just like anybody else, people with BPD can be cruel, regardless of their condition. They can also be kind, although sometimes the kindness is muffled under sheer panic. Somebody living with BPD is not the whole of the condition; they’re still the person you know, with all that person’s foibles, beliefs, experiences and knowledge. BPD may be a massive part of their lives, but it doesn’t entirely consume; they’re in there somewhere and not everything they say or do is dictated by BPD.

I don’t know if this post makes much sense; my head is everywhere right now. There’s a lot to write about.

 

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29 Comments

Posted by on November 29, 2012 in Every day life

 

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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.

 
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Posted by on November 5, 2012 in Every day life

 

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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.

 
47 Comments

Posted by on October 17, 2012 in Every day life

 

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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.

 
43 Comments

Posted by on September 26, 2012 in Every day life

 

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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.

 
16 Comments

Posted by on August 21, 2012 in Every day life

 

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