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

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

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

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

01pain

www.thechinchilla.com

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

I feel very out of control.

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

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

adore

danielleflanders.blogspot.com

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

“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.

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.

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.

I hope you’re feeling happy now, I see you feel no pain at all.

We drank vodka and orange juice, beer, cider and rum and coke. Played Boggle online, keeping a tally of scores. Sat in the garden – both rain and shine – and smoked while getting sunburned one day and sheltering from the torrent by squeezing into the spider-infested shed the next. Ate pizza, kebabs, garlic mushrooms, toast, a roast dinner, chocolate mousse, biscuits and pack upon pack of Wotsits. We sat by the lake and stuffed our faces with chips, watching a swan paddling away near a stack of beer barrels and an old paddle-boat which is long past its prime but still takes tourists out on the lake in the summer; rust and all.

We lay in bed for hours. Napped when we felt like it, and stayed up late. Ventured out to buy large mochas and sat for hours, watching the world go by. Bought blackcurrant beer and German ale, and laughed at the weird and wonderful passing our little spot in the street. Had mind-blowing, sweaty sex, over and over. Watched Trailer Park Boys on YouTube and ordered takeaways so we wouldn’t have to go shopping. Played 8-ball with a couple of friends and smoked a not-so-sneaky joint outside the pub. Got drunk and stoned and laughed at nothing, for days on end.

Now, it’s Wednesday morning – almost 5am – and I’m sitting on my bed, wide-awake, cannabis smoke floating in the air and through the detritus which covers my bedroom. I don’t know what happened; a miniature hurricane, I can only assume. Pill packets and incense sticks are cluttering up my desk, along with bottles of nail varnish remover, jewellery holders, and empty tobacco packets. The coffee I made is strong and bitter, with grounds still floating on top, and my mouth is dry from all the smoke. I haven’t slept, and I have a doctor’s appointment at 9:30.

After such an amazing, hedonistic weekend… I should be happy. I am, really. I’m just… eh. Angry, I suppose.

I’ve occasionally mentioned having tendonitis. Acute Achilles tendonitis, to be exact. I’ve had it for over a year. There was no real obvious cause; the sole of my foot started aching every time I moved and, in a worryingly short space of time, I lost the ability to flex my foot up or down. I stuck it out for months, deciding it was yet another frustrating part of fibromyalgia, until the pain became so unbearable – like knives being driven into the back of my ankle – and I woke up one morning unable to hold any weight on my left foot. It was just dead; tingling and unresponsive with sharp ribbons of pain snaking over the whole of my lower leg. Naturally, I was a bit concerned and, considering I couldn’t walk and felt a weird combination of numbness and excruciating pain – along with balloon-like swelling of my foot and ankle – I went to A&E.

Long story short, I was given some painkillers and told to go home and rest. I wasn’t even seen by a doctor. I cried, but it got me nowhere. After going to my GP to complain that nothing was done to help the obvious damage, I was referred to a podiatrist/physiotherapist. He manipulated my foot, gave me insoles to force the tendon into place, and covered my ankle in ice until it burned. Whatever he did, the swelling refused to go down and so he referred me onto the biomechanics clinic to see a rheumatologist who specialises in movement.

Of course, they wrote to me and informed me that my appointment was to be moved to September.

That’s not why I’m angry. I’m angry because, after over a year, I’m still in pain. It’s yet another ridiculous sensation to deal with, and I’m sick of being pushed from pillar to post when nothing really seems to achieve anything. I’ve had an ultrasound scan, but still – over a month later – don’t know the results.

For the past four days, I’ve been unable to walk without standing on tip-toe on my left foot, because the tendon is so damn tight I can’t move it without pain. Tooth-gritting, wincing, tears-in-the-eyes pain. S has been his usual amazing self – fetching cups of coffee for me and helping me get over the back door step – but now that I’ve come back to my mother’s after an extended weekend (from Thursday to last night; S took some time off work) I’m quickly sinking into the old frustrations and regrets about not pushing harder for treatment. I’m such a mouse sometimes. I don’t want to tell anybody what to do.

That has to change today. Originally, I was seeing my doctor for a swollen finger; hardly the medical drama of the century, but a very painful inconvenience, and I figured I could get the whole blood pressure/side-effects/general emotional well-being stuff out of the way for another month or so. However, the red skin and suspicious ridged nail will have to take a backseat, because I’m determined to get something done about this damn foot today.

If I have to cry, I think I will. I rarely cry in front of doctors – I already feel inferior to them – but quite honestly… I just want this pain to stop. I have enough to deal with already, and I just need some respite. Some time to enjoy the effects of Lyrica – which doesn’t work on tendon pain or swelling – and try to start living my life again. Instead, this fucking tendon has taken over my life.

Over the weekend, the photograph of myself I posted has been weighing on my mind. Did I do the right thing? Am I utterly off my head to think that putting a photograph on such a personal blog is a good idea? More than once, I’ve thought about removing it; just deleting the post and forgetting it ever happened. However, doing that would also mean I’d lose all the comments which, although hard to read without wanting to run away, really made me feel secure, and my cold old heart was pretty damn warmed by knowing there are people reading this who don’t think I’m disgusting.

Also… nothing is ever lost on the internet. It’s there forever now.

So I just need to suck it up and accept that my anonymity was ruined a while ago, and it’s not like I’m a celebrity. The chance of somebody I know finding this blog on their own is still lower than low, and if they did find it… well, maybe they shouldn’t be so nosy. Perhaps they’d learn something.

I should really write a list for my GP. Each time I see him, I forget something vital. I only refuse to do it because my mother insists I write a bullet-point list – typed and printed – for every appointment; a bit of teenage rebellion which I never quite grew out of. This time… I haven’t slept. I haven’t drunk nearly enough coffee, and the weed is stronger than usual. Great for pain; not so great for thinking clearly.

If I throw myself on the floor and have a tantrum, do you think it’d achieve anything? I feel like it’s about time to direct my anger elsewhere than at myself.

 

Don’t blame your daughter, that’s just sentimental

I was angry earlier – I suppose it showed – and I’m starting to feel a little guilty for lashing out verbally on such a time-worn subject. It’s a story which has been done to death over the years, and I’ve cried more tears over my mother’s control than anything else in my life. Although I didn’t cry this time, I wanted to; the only thing holding me back was a sense of pride in believing I was right, and not wanting to show weakness to her while she had the emotional upper hand.

Understand this; I love my mother. I worry about her constantly – her physical health, her moods, her depressions, the way she rarely eats – and I’d fall apart if anything happened to her. Although I hated her at times throughout my teens, I gradually learned that not everything she did was to spite me; over the years, my mother has opened up about her abusive relationship with my father, her brother dying when he was eight years old, her father dying of cancer when she was fifteen. She’s had a turbulent life – like mother like daughter, I suppose – and the more I get to know her, the easier it is to see that I’ve learned a lot of my behaviour from her, such as my ridiculous attitude to food. She’s obviously struggled with a lot of stress and drama, and sometimes I see flashes of myself in the way she rants and raves; flashes of BPD.

I suppose we’re too alike in many ways. Both prone to sulking and unjustified anger. Both trying to control situations; she tries to control me, I try to control myself. Both living with chronic pain. Both dealing with the stress of illness. Both knowing that men are sometimes unspeakably cruel.

I’ve spent so much of my life feeling inferior to her, feeling pushed out of the family and wrapped in cotton wool. Been the baby of the family for too long. I’ve watched my brother go off to be a train driver. Seen my sisters become managers and childcarers. Felt left behind as they buy houses and settle into their lives. My sister (E) ran away from home in her teens and stayed in a B&B, because she couldn’t cope with the controlling atmosphere in the house… leaving me to receive it all.

In a way, I wish I could hate her. It would be much easier to think she’s just a cruel woman; but she isn’t. She’s ill, she’s ill in the ways I am, but she will never admit to it. I’ve tried; she admits to having depression and I know she’s been on antidepressants in the past, but I know she struggles more than she ever shows.

I don’t know how I feel about moving into a flat with S – possibly next month – because I know she relies on me. As a child, I thought her demands for cups of tea were akin to slave labour; now I know it was because she couldn’t handle the kettle with arthritic fingers in the morning. I thought her hatred of my boyfriends was some sort of jealousy, when she turned out to be right about them every time.

She hurts me, though. Her little comments about my weight – hinting I shouldn’t be eating so much – and piercings/tattoos get me down. Her need to know every single thing about my life is tiring, especially when there’s so much I could never tell her. Her control over my finances… it’s destroyed my trust in her, because I know she doesn’t trust me. I’ve tried my best to be the daughter she wants me to be, but I know deep down I’ll never achieve that because it just isn’t me. I have piercings which she hates. I have ink she loathes. I hang around with people she can’t stand. I wear clothes she may not always approve of. I take risks and make decisions without her input… and that won’t change, because it’s taken most of my life for me to begin to realise who I am. I’ll never be what she wants.