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.

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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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.

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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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.

______

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. 

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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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.