RSS

Tag Archives: fibromyalgia

My little empire.


“My little empire
I’m sick of being sick
My little empire
I’m tired of being tired”

 
3 Comments

Posted by on February 16, 2013 in Every day life

 

Tags: , , , , , , , , ,

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?

paranoid

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.

pills pills-3734b1
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.

______

 
10 Comments

Posted by on February 13, 2013 in Every day life

 

Tags: , , , , , , , , , , , , , , , ,

Me, I disconnect from you.

“I’m only going to say this once; will you stick by me?”

sad-woman-black-and-white-facebook-cover

Sometimes there’s no controlling it. That outburst; the rush of fear and sadness, the pressure you’ve been keeping safe inside bursting out and smothering everything around you, leaving you breathless, unable to make sense of the words, unable to do the most basic tasks without messing up and descending into a spiral of unnecessary apologies.

Breathe.

You forget to breathe.

This afternoon, I buried myself under the duvet. Breathed in the lavender-and-chamomile linen spray on the pillows and the slight scent of S’s hair where he’d slept earlier. We woke late; by the time S whispered and nudged me into consciousness it was past 3pm. He lay in bed in his pyjama bottoms and blue jumper, reading and chatting to me as I tried to force myself out of an uncommonly deep sleep, wandering from bathroom to kitchen, making coffee and wrapping myself in my still-damp dressing gown. The coffee didn’t help. Encouragement from S achieved nothing. I just wanted to stay curled up, as though I could hibernate right through winter and spring, only surfacing when the world didn’t seem quite so dull.

Sleep didn’t come last night; when I finally crawled into bed next to S and snuggled into his armpit, daylight was coming through the blinds. I’d been thinking, and smoking. And thinking a little more.

sad-woman

For almost a year, I’ve been saying I’m ready for the bad news on my heath. I’ve wanted to know why my body has failed me, and I’ve craved, begged, pleaded for a reason behind it all. In this blog, I’ve gone from “I have fibromyalgia” to “something’s not right”, and now… now things really aren’t right.

Six days ago, the pain in my ankle and foot came back, worse than ever. A stabbing, searing, ripping pain which took up all my energy. I had a mild cold, so that became the culprit for a while; it was easier to blame a virus than accept what the pain returning probably meant. However, the cold is gone now but the pain remains. Co-codamol doesn’t help. Dope only does so much to relax my ankle. There’s no way of distracting myself, no dissociation I can use to find relief; it feels like somebody is twisting a knife in my foot, and each movement, each millimetre my toes twitch, they dig the knife in a little further.

They explained this at my last orthopeadics appointment, that the cortisone injection was a diagnostic as well as a pain reliever (yeah, because that bit worked well), and if the pain returned in around two weeks, there would have to be an operation. Just an outpatient one, to remove the synovial tissue in my ankle. That doesn’t bother me; after the needle from Hell they injected the cortisone with. What bothers me is that the pain returning means that it’s not as simple as a bit of arthritis and a damaged tendon; it means that something’s happening in my body to cause an inflammatory response.

It’s sort of the final nail in the coffin for RA.

synovitis

synovitis

This is my foot now. I’m not bragging when I say I used to have beautiful feet; sure, my toes have always been a little too long, but they’ve always been slim and well-shaped. Now… my toes curl under. The effort of keeping them straight is too much now, and too painful. I have bumps on the sides of my toes, and when I’m relaxed they curl together. Sometimes I have to reach down and untangle one toe from behind another, because I can’t straighten them. They’re fat and misshapen.

It’s a strange day when you no longer recognise your own feet. Before moving in with S, I threw out a lot of my heels; I couldn’t comprehend ever wearing them again, and seeing their shiny patent leather and little bows and hearts and pointed toes… it depressed me. I live in knee-length boots now, with a low wedge heel and orthopaedic inserts. If I’m feeling brave, I’ll put trainers on… but I can’t walk far in them.

It’s such a simple thing. Footwear. And I feel cheated by not being able to choose anymore.

 
9 Comments

Posted by on January 7, 2013 in Every day life

 

Tags: , , , , , , , , , , , , , ,

“I wouldn’t be buying plug-in air fresheners if I didn’t want to live with you, would I?”

We’re nearly there. Empty boxes are beginning to outweigh full ones, and the hallway carpet is finally visible. S spent today sorting tools and electronic bits into drawers, while I painted the underside of some shelves I started yesterday, and a shelf S build from some scrap pieces of wood to attach to the blackboard I made from the backing to an old painting I found in the basement. We’re putting them up in the kitchen; I’ve accepted that my piss-poor memory isn’t going to improve any time soon, and any tools to help me remember the most basic things would come in pretty handy.

We’re finishing off tomorrow, and putting the Christmas tree up. After years of making sure my mother’s collection of decorations was in her will – I’m not kidding, I really love those decorations – she announced a few weeks ago that I could have them. Neither S or I are particularly big on Christmas, or public holidays of any kind, but I sort of want a tree and some sparkly lights for our first Christmas living together. We went to Tesco tonight to pick up some essentials, and ended up getting excited over festive food; something I never thought would happen.

lights

 

I confess, my first solo-ish Christmas combined with finally unpacking has brought the BPD out a little, and I’ve had a couple of outbursts; panic-driven, tear-stained, get-the-hell-away-from-me-or-I’ll-explode. I’m getting finicky about calories again and standing in front of the full-length mirror, loathing everything about my silhouette. Started wondering, “what’s the point in worrying about all this when i’ll inevitably go wrong anyway?“.

So I was quite surprised when S, who was leaning his head on my arm as I read in bed, said, “you are still enjoying living with me, aren’t you? I know I can be a pain.

It’s rare for S to show any real vulnerability. Not out of some misguided macho pride; he just doesn’t, and it seems to work for us. It’s always a surprise when he does, and I never quite know how to deal with it. After all, could I really be 100% honest without terrifying him? “Actually, I’ve never been so happy, and just being around you is making me more comfortable than I’ve ever felt in my life. Waking up with you is the best thing ever, and I feel like I could explode when you make me a cup of coffee because it’s so damn awesome to finally be living with you”.

No.

Past relationships – especially those with O and J – have taught me that it’s very easy to say the wrong thing, and sometimes it’s best to just keep my mouth shut if I want things to run smoothly. So I just stroked S’s hair, kissed him on the nose, and said “I wouldn’t be buying plug-in air fresheners if I didn’t want to live with you, would I?

Couple-on-Sofa

 

The past week has been strange to say the least, and I feel guilty for writing posts and not responding to comments. I had planned to get stuck in to this blog a little bit; find the time somehow to sit and relax and really think about everything which has happened and all the little occurrences I should be writing about. I do read every single comment, and it’s not like I simply shrug them off; many of them stay with me while I’m going about my day, and I find myself thinking of certain readers, wondering how they are.

I never really explained in my last post why I had a great big needle stuck into my ankle. In truth, I haven’t really wanted to speak about it much because although it’s wonderful that I’m finally – finally – being taken seriously and tests are now beginning to show results, it’s also scary. Words are being thrown around which I’m not entirely comfortable with. Suggested diagnoses. Referrals back to rheumy. Discovery of a misdiagnosis, and something big which was missed entirely.

Long story short, my ankle/foot pain was never being caused by Achilles tendonitis, despite it being diagnosed by physio, the bio-mechanics clinic, and orthopaedics. I’ve actually damaged a tendon in the side of my foot, meaning that the exercises I was all but bullied into doing despite my protestations of pain were just exacerbating the problem. The ultrasound I had a couple of months ago showed a tear in the tendon, and also a light mass in my ankle joint. Fluid. Lots of fluid.

So I was rushed through X-Ray. Being rushed through any department in my local hospital is a miracle in itself.

Then finally, after almost two years of constant pain, referrals, tests and appointments, it all began to come together.

Xray

 

The damage to my tendon is a symptom, and the reason why I’ve been in so much pain is because my ankle joint is incredibly inflamed, so I’m getting pain from both things, and the tendon can’t heal because the swelling keeps it constantly stretched.

So far, so normal, really. Dr. B did say I have osteoarthritis in my knees and fingers, so why not elsewhere? Only, my othopaedic consultant sat down and asked me a load of questions about my health; when I had pain, where the pain was, how well I slept, my eating habits, the history of my fibromyalgia… read back through my notes, and spoke to another consultant.

I’m going to send these results to Dr B. With your history and symptoms, we may well be looking at rheumatoid arthritis“.

He’s the third medical professional to say that in the past six months.

Only this time, they have actual pictures. Proof. Proof that I’m not faking it, and that there is something wrong with my body. That ultrasound scan.. just one scan, 15 minutes of my time, and finally things are happening.

Do I want RA? Hell no.

Do I believe I have it? Yes. It all fits. Everything. Almost too well.

Tests are beginning next month.

 
32 Comments

Posted by on December 23, 2012 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , ,

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.

 
12 Comments

Posted by on November 5, 2012 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , , , , , ,

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

 

Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Only words

You think that these are only words,
a shameless outpouring you don’t understand,
you thought that this meant nothing to me;
those feelings I offered you in my hands.

The truth should never have been so clear
in black and white, in printed ink,
you should have known what I was saying
but you didn’t see, you didn’t think
that my words could be my only way;
that just perhaps, I’m as confused as you,
you didn’t see that I could also be hurt -
that I could be feeling the same pain as you.

You held the world in your hands,
but they were just words, you just couldn’t see
that those pieces of paper, now thrown away
were everything I had of me.

(c)

Once, I showed O some of the poems I had written about all the problems we were going through together. He’d read my poetry before and praised it, and I felt it was my only way of reaching out with any real honesty. When we sat face-to-face, glaring and spitting out cheap insults, I couldn’t speak properly. Couldn’t get the words out, because I was so afraid of saying the wrong thing. 

I said things I didn’t mean instead. Anything to hide what I was really thinking. I messed up so many times, saying the wrong thing entirely rather than the truth. Things which only made O shout and sulk more. 

I showed him my poetry. He knew I was falling apart.  

He read it, shrugged, said he didn’t understand it and threw the piece of paper on the floor. It lay there, half under his bed, for months. All I wanted was for him to see the truth. He refused to see. 

Posted for dVerse Poets, with the prompt:

 It’s not fall yet, but the promise of autumn seems to tease us from around the nearest corner, and offer us something better to anticipate.

The very real but difficult to express level of delight this caused me made me stop for a moment to think about the nature of amorphous concepts like anticipation, hope, despair and so forth, and how, like so much of poetry, they express something enormous that is neither physically measurable nor concrete, that only exists in the mind and spirit.

We have science for facts and process, philosophy, metaphysics and religion for the questions of existence, but for defining and expressing our own most elusive internal constructs of emotion, we only have art, poetry and music.

That’s the coded message behind the most analytic and dry poem as well as the most saccharine pop song, conveyed with varying degrees of skill and effectiveness: that we have only these tools to try to communicate a vast reservoir of fluid intangibles we all experience but have difficulty defining or expressing any other way.

As for me? I’m doing okay. Yesterday afternoon was spent tidying up in preparation for moving; today was supposed to be an exercise in extreme cleaning (my furniture is filthy from hundreds of spilled coffees and months of dust) but yet again, fibro strikes.

Food… I’m trying. I ate a small bowl of chips last night with some bread, and a pack of bread sticks. Nothing eaten so far today, but there’s time. I’m incredibly grateful for the messages of support I’ve received over the past few weeks; I know I haven’t always responded to comments but that doesn’t mean I don’t read them and take the words on board. It’s just difficult to reply when everything is so up in the air.

 
20 Comments

Posted by on August 29, 2012 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , , , ,

Dreary Mondays and The Daisy Award

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

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

.

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

* Thank the person who nominated you.

* Tell your readers 7 unusual things about yourself.

* Nominate some worthy bloggers.

What is a quiet borderline?

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

Which ultimately is not that different from what you would consider a classic Borderline presentation. By which I mean that all those underlying reasons for a BPD diagnosis are essentially the same in those that are “quiet” and those that are acting out. The main difference is how it presents and manifests… how a person expresses their symptoms.
.
The Quiet Borderline is a blogger I much admire. I hesitated to use the word “blogger”, because it doesn’t sum up the depth and detail in her words. Above all else, she’s a writer; and one I highly recommend reading if you want to know the ins and outs of BPD. Her tenacity in dealing with often horrible situations is to be respected, and it’s an honor to be nominated by somebody like her.
.
.
Seven unusual things
.
1. Like The Quiet Borderline, I have mangled toenails. Both nails on my big toes were removed in my early teens, and I hide the skin where it never grew back by covering it in nail varnish. You will never see me without varnish on my toenails; it’s almost an obsession. I can still remember the nurse squeezing my hand as a needle was pushed right through my toe. I think I broke her fingers.
.
2. I’m incredibly blasé about needles, otherwise. Blood tests have never been an issue for me, and as a child I used to love watching the blood go up the cannula into the little vial. Heck, I still do that.
.
3. Although I knit a lot, I rarely finish a project. To date I’ve made six hats and six scarves, despite spending hours knitting like a fiend. Like most other things in life, I’m dogged by paranoia that whatever I touch ends up ruined. If a stitch drops or I accidentally purl instead of knit, I won’t go back and fix it even though I know how. It’s failed by then.
.
4. I have a great weakness for Nero’s hazelnut mochas. Not really unusual, but heck. It’s a fact.
.
5. Considering I often sleep until the afternoon, I absolutely adore the morning. Especially when the sun is just rising on a warm day; it makes me blissfully happy. I’ll throw open my curtains and open the window, even if I’ve been up all night staring at the laptop screen and smoking like a chimney, red-eyed and coughing. Even if I go to sleep straight afterwards, I have to see the sunrise if I have a chance. It’s always peaceful. I love the world before it wakes up.
.
6. I often buy books based purely on the cover art.
.
7. When I’m stressed, I spend money. It’s a release of sorts, almost similar to self-harm. In fact, I’ll often buy things I don’t need rather than cut myself. It’s not quite as effective, but holds off the urge for a while. I’ve never been in proper debt, but I do owe my mother quite a bit of money. I keep borrowing to pay for hair products and make-up; you see, when everything goes wrong I try to patch things up with the false illusion of beauty. If I’m pretty, life can surely never be harsh. I need to spend that money because that lipstick may just be the answer to everything.
.
Nominations
.
I don’t really know what The Daisy Award means, so my nominations are bloggers who have inspired me – in their own ways – to keep writing and sharing.
.
.
..
 
37 Comments

Posted by on August 6, 2012 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , , , , , , , , , ,

Fingers crossed

Sometimes fate seems to conspire to shuffle everything into exactly the right position. Sometimes, you get given a break from nowhere, and although looking upon it as some sort of divine intervention is undoubtedly ridiculous and against everything I believe in… occasionally I wonder if somebody may be looking out for me.

I never wonder enough to believe it. I’m a woman of science; in mind if not education. Sometimes the concept just flickers through my mind. Like it did today.

I didn’t sleep. Of course I didn’t; it never happens before an appointment, and I admit I to missing S terribly after spending five days attached at the hip, so – as always – I comforted myself with procrastination until morning. Dragged myself off the bed at 8am to tie my hair back, put some mascara on and shuffle myself into my massively-oversized fat jeans, and then sat around snapping at my mother for a while. As usual, she gave me the usual verbal list she trots out every time I leave the house:

Have you got your phone?

Have you taken your medication?

Have you got your stick?

Do you have a cardigan?

Will those shoes be comfortable?

… sometimes, the list can run on into the hundreds, I swear.

To my shame, I called a taxi to get me to the small medical centre. It’s only a five-minute walk from my house. I just couldn’t face hobbling down the street in full view of the neighbours. I’m already the local weirdo, and small-town memories are long; my neighbours have seen me being brought home by police cars and taken to hospital in ambulances. They’ve watched me storm down the road while screaming at my mother, swearing and threatening suicide. To them I must come across as very strange; often not leaving the house for days on end and never using public transport. I’ve never driven a car (legally anyway) or left every morning for a regular job. It’s rare that somebody visits our house, and my bedroom window – which overlooks more houses – often has the curtains open wide and a light on at 3am.

I digress. When I got to the medical centre, I walked to the desk and told the receptionist I had an appointment with Dr C at half nine. She looked at her computer screen and winced; “it’s actually booked in with Dr W“.

Dr W is my sworn mortal enemy. As a young child, I was allergic to streptomycin – an antibiotic which is now only given intravenously in most countries, but was free for oral use when I was younger – and this was clearly documented in my notes. Dr W was called out for a home visit after I’d picked up yet another infection somewhere in my body, and straight away prescribed streptomycin. I assume my mother was too tired and stressed to check what she was giving me. Long story short, I went into anaphylactic shock and became very ill, and my mother and I (almost-jokingly) refer to her as the woman who tried to kill me.

Okay, doctors mess up. However, Dr W has been my sister’s GP for a long time, and in the past would often leave E in tears as she accused her of smoking. E is severely asthmatic and requires strong inhalers, and I’d take a guess that she really, really doesn’t smoke. Neither of my sisters do, although my brother C smokes like a chimney

As a result, I’ve always been  nervous of Dr W. I don’t cope well with authority as it is, and any hint of feeling judged or being seen as faking it sends me into a mad panic. However, I was in such a bad mood that I just accepted my fate and decided to throw her desk across the room if she so much as looked at me sideways. As it turns out, I didn’t need to force my pathetic muscles to throw office furniture. I didn’t even need to protest anything. This is where the fake divine intervention comes in. I saw her on the day I was finally going to lose it, when I finally reached the end of that absurdly long tether. The one day I wasn’t meek and mild, and was prepared to threaten to sue over the ridiculous length of time I’ve been expected to deal with multiple health problems with no real treatment or investigation.

I sat down and we exchanged “long time no see” pleasantries. I bit my tongue against saying “long time no attempted child murder”, and explained what’s been happening.

“I’m just tired of the pain. I’m sick of missing out on life because everything revolves around appointments. Lyrica helps, but I can’t enjoy my new-found ability to walk more than a few yards because I can’t stand on my left foot without wanting to amputate it. I never heard back about any test results, I don’t know what’s happening, everything seems to be inconclusive, and I want to know what’s going on.”

Dr W got on the phone to radiology and tried to chase up my ultrasound results, with little luck. Then she called my rheumetologist’s secretary. Again, no luck; Dr B has the results but Dr W couldn’t access them. After examining my foot she confirmed that I had indeed waited too long for any follow up, and promised to speak to Dr B himself later in the day to arrange an appointment with him ASAP.

I left her office feeling hopeful. Dismayed that I still have no way of alleviating the pain, but cheered to know she listened to my worries and not only took them on board, but acted on them. The doctor who tried to kill me… she came through for me.

By 11am, she’d spoken to Dr B. He’s sending an appointment out.

Fingers crossed.

 
27 Comments

Posted by on July 12, 2012 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

“We can’t let her think we’re unintelligent, T”

My mother is still stressing out over the benefits situation. This morning found her surrounded by bank statements again; double, triple and quadruple checking dates just in case she’s made a mistake somewhere. The living room floor has become a holding pen for pieces of paper, pens and cups of cold tea as she tries to ensure every last little bit of money in her account can be explained. Pension credit. Money my father occasionally paid into her bank for work on the house. Gifts. Every last penny is being accounted for, and it’s driving me crazy.

I don’t know if she’d ever understand this, but they’re investigating me, not her. I’m doing my best to ignore all that’s happened and let it wash over me, but the constant stress of my mother’s obsessive perfectionism is ruining my attempts at coping. I want to slap the bank statements out of her hand and shout at her; tell her it’s my life on the line, not hers, and if I can try to deal with it then she should too. I know that’s a selfish attitude to have, but I wish I could make her see that she’s just winding herself up. The fraud officer… she doesn’t need all this information. I wish I could explain that, but my mother doesn’t hear me when she’s determined to prove some sort of private point to herself.

I had to type out a couple of cover letters earlier, to put in with the collected statements. My mother’s wittering and stressing and tutting… I made so many mistakes, and each time my mother pointed the errors out and said, “we can’t let her think we’re like the others who get accused. We’re intelligent”.

She reads the Daily Mail.

I haven’t felt able to think rationally all day. It’s 1am now, and I’ve been trying to write this post since early this afternoon, with little success. Every time I sit down to type, I get distracted. I get like this sometimes; I go from laid-back and lazy to almost-ADHD within a second, unable to stop my brain running away with itself. Today was one of those days, with a hefty dose of panic thrown in.

All day I’ve been on the edge of tears for no damn reason. I hate it when I get like this. I can remember standing at my teacher’s desk in primary school, being told off for something stupid, and bursting into tears. I felt so ashamed; no other kid reacted like that. I still do it whenever I feel threatened or backed into some sort of corner.

Before we even got to town, I was panicking and snapping at my mother. I didn’t mean to; I just had no control over my emotions. Again, I hate it when this happens… everything in my life is about control and knowing exactly where I am emotionally, and when I freak out it feels like I’m going to die. All the protection I build around myself gets stripped away by anxiety and I feel utterly exposed. Like the whole world knows I’m a big, fat failure.

It’s now 3am. I tried to sleep, but my bedroom is too warm and my mattress is at an odd angle since my mother flipped it over at the weekend. I keep thinking back to today/yesterday, and realising just how much anxiety still rules my life. It’s not just a one-off either; I freaked out at the weekend too, while S and I were in Liverpool. I was frustrated that everything was hurting, and walking was near-on impossible. I couldn’t keep pace with S and even though he tried to slow down for me, I still felt angry that I couldn’t walk normally. That I had to keep stopping and sitting down to give my hips and legs a rest. I felt like I was letting S down; he’d gone to the effort of taking me for a day out, yet I bitched and griped my way around the city.

I tried eating at the restaurant he took me to – a bistro we’d visited before – but even the Greek pizza tasted like disappointment. On the train home, I sat next to S while he chatted to an old man sitting opposite, feeling utterly miserable. I know I shouldn’t let the pain get to me, but sometimes it’s hard not to wish I could just be normal. Just for one day.

We got back to his landlord’s house and sat in the garden for a while, smoking and drinking coffee. We chatted a little, and I made a few jokes about my inability to cope. S seemed unusually introspective, and something inside me decided to take the BPD view on things. I asked if he was okay. S said yes. I asked again. I worried. I thought perhaps I’d ruined the whole day by being me. I said he looked sad; he said he was just tired. It took all my strength not to ask again, to avoid grabbing onto his arm and begging him not to leave me.

It’s now half past two in the afternoon. Managed to sleep, eventually, after going downstairs and stuffing myself with mango jelly. I’m quite proud of myself; I wanted chocolate cake, but forced myself to go for the low calorie option instead. For now, the binge cycle is somewhat under control.

Yesterday ended up being a total disaster. I was angry and defensive to begin with, and my mother commented on my paranoia; something I hate being brought up. I know I’m paranoid. I don’t need to be told. I tried to keep it together as we walked around town, but everyone seemed to be staring at me and getting in my way on purpose, and half way around the shops I realised I hadn’t taken my medication – which only caused me to panic more. Life without the cipralex and beta-blockers is unbearable, and it amazes me how quicky I can go from coping quite well, to a nervous wreck within hours of missing a dose. Especially without the beta-blockers; they slow my heart down and stop me going into the fight or flight response because of entirely ridiculous things.

I complained. Bitched. Moaned. I felt bad, but I couldn’t help it. My brain said one thing and my mouth said another. The pain in my ankle was frustrating me and every tiny little noise set me off. Our main shopping street isn’t particularly big, so it gets very crowded. Even though it was pouring with rain, the crowds were enough to make me feel entirely insecure and vulnerable, and my mother kept telling me off for being irrational, which didn’t help at all.

I’m sorry for this post. I know it’s mixed up and confused. I don’t even know what I was trying to say.

 
33 Comments

Posted by on July 3, 2012 in Every day life

 

Tags: , , , , , , , , , , , , , , , , , , , , , , , ,

 
Follow

Get every new post delivered to your Inbox.

Join 2,898 other followers

%d bloggers like this: