Wrong way on a one way track

“Can you help me remember how to smile, make it somehow all seem worthwhile?

How on earth did I get so jaded?“

Depression is a cruel, cruel illness. It robs you of the ability to give a damn.

I find it incredibly difficult to write about depression with hindsight. It’s far easier to force myself to open the laptop when I’m feeling utterly sunk in misery and numbness, and explain it in real time. Otherwise… I can’t begin to describe how it feels to be trapped so far within myself that the outside world is just a whisper in the background.

For weeks – months – I have slept during the day and lain awake at night until the sun rises. Attempts at righting my sleeping habits have been pointless; the pain dictates what I do, and when I do it.

So, am I free? Almost. Today, I managed to wash the dishes, tidy the bedroom, water the plants and do two loads of washing. That’s that most useful I’ve been in months. Strangely, I haven’t needed a single painkiller today up until thirty minutes ago. Last night, my foot was swollen to the point where the outline of the damaged tendon was clearly showing, so I don’t know why I’ve been granted a small respite today. All I can assume is that my plan of keeping my foot off the floor as often as possible (I’ve invested in crutches) is working. True, I hate having to stay on the sofa, and it’s horrible knowing spring is somewhat here but I can’t go for a walk or even down to the garden (too many holes in the pathway), but perhaps it’s paying off. It has to be better than last month’s buckets of ice water and boiling hot towels.

I’m trying everything. Which is… a good sign, I think. Over the past week I’ve started thinking about the future, and that’s something I didn’t think I’d feel happy feeling. I’d given up entirely, and I almost felt safe there. Does that make sense? Failure is… easier, somehow.

On Saturday, I had an MRI at Liverpool Hospital. The week before I had ultrasounds at the same hospital. In nine weeks, I see the rheumatologist again. Until then, my GP is giving me regular codeine prescriptions and, if I need them, I can ask for morphine patches. I’m wary of doing so; I don’t want to leave myself with no options. I get used to opiates far too easily.

So… the codeine. It’s going okay, actually. There have been a few days where I’ve taken more than the recommended dose, but that was purely through pain. So while I’m still not entirely responsible… I’m learning. I’ve learned a lot of lessons recently, and one of those is that painkillers are important. When you’re in so much pain that you could rip your own face off, the last thing you care about is abusing painkillers to escape the fear. You just want to escape the pain, and let them do the job they were designed for.

Oh, it’s not easy. I’m constantly on my guard, and I know it’s something I’m nowhere near over. Addiction is… well, it’s an addiction. It’s come back far too many times for me to ever say I’m over it.

They’re not perfect. Tramadol was much more effective, but I couldn’t be doing with the apathy and constant nausea. So I still have pain, it just becomes easier to ignore. That’s why opiates are so perfect. They don’t remove the pain, just stop you caring.

Like depression.

One day, perhaps this will stop happening. I’ll stop losing it, and life can run more smoothly.

 

 

It demands to be felt.

I spent some time last night reading through a few of my old posts. Recently, I’ve become incredibly bitter about my situation, and part of that bitterness is centered around my inability to write properly now. Writing has always been my way of dealing with things; before the painkiller addiction came a writing addiction, and up until recently it’s been all I know. Now… my brain just can’t process the words properly. I read every single comment, but the energy it takes to consider and type out a reply just isn’t there.

Tomorrow evening, my mother is taking me to see my GP.  I asked her to come with me after last week’s disastrous appointment, so I have a buffer against the almost-inevitable meltdown. The point has come where I’m too distressed by the pain in my foot and ankle (a hot, burning, stabbing, pulling feeling, demanding my attention 24/7) to keep my emotions in check, and honestly, I don’t think I care anymore. I’ve become so used to crying in public – something which used to mortify me – that I’m almost blasé about it now.

 

Over recent months, my health has gone very downhill. I’ve become almost totally unable to walk unaided, and only leave the flat once a week or so. After a short walk (sometimes only ten minutes), I’m left in crippling agony for days on end. I’ve had to stop taking the tramadol because it made me feel so sick, and although I’ve managed to find a small number of prescription-strength co-codamol which we discovered in the bedroom when we moved in, the relief only lasts an hour or so before surging back into my heel, ankle, calf and toes. It’s something I can’t describe; imagine the worst pain you’ve ever been in, then magnify it by ten. Every single step is like climbing a mountain. I have to brace myself each time my foot touches the floor.

My mother says I have to go through this; I have to be bitter and angry and resentful, so I fight back. I admit, I have started to consider the possibility of this pain not being forever (for months, I’ve believed that this will be my life until I die), even if it’s unlikely. After all, everything I’ve read and the words of both an orthopedic surgeon and a rheumatologist back that belief up. Still, there’s a chance. I want to believe in that chance, so much.

Two years is a long, long time to be in constant, burning pain, and my mother says she will speak for me at tomorrow’s appointment. I don’t think I can make sense of this anymore, and everything I say comes out wrong. A while ago, I wrote about how I have difficulty admitting weakness to those in authority. Ever since, I’ve tried to remedy that but the problem is too deeply ingrained to fix overnight, or even in six months. So I need an advocate. My mother and may have had many, many conflicts and we may have a tainted history, but she knows me better than anyone else, and she’s seen me falling apart over the recent weeks and months of increasing pain.

She was supposed to visit today, but I sent her a text saying it wasn’t worth it because I’d been up all night. I did get to bed at a reasonable time after hours and hours alternating ice water and heat on my leg, but woke at 2am. S was awake, and asking if I was alright. The pain screamed through the back of my ankle and heel, and apparently I’d been crying out in my sleep. Clearly, I wasn’t going to get back to sleep so I kissed S, waved off his offers of doing something to help (really, nothing can help) and told him to go back to sleep. I set up camp on the sofa with a cup of tea and a joint, raising my leg as high as possible with a construction of pillows, cushions and my old duvet. I’ve become incredibly attached to that duvet, as I always do when I’m struggling.

I watched iPlayer all night, spacing out doses of co-codamol to avoid taking too much. I’ve learned too many hard lessons regarding that. It’s difficult, being in the living room while S is asleep in bed. I miss him terribly. We’ve always slept very closely, waking up most mornings wrapped around each other in all sorts of bizzare contortions, so to be alone on the cold sofa is pretty depressing. It’s happening more and more often now, usually because I can’t make it to the bedroom. It’s only a short distance through the hallway and there are no stairs, but it’s incredibly difficult trying pull myself along the walls and balance on one (also painful) foot to avoid making the pain worse. So I bed down on the sofa, hoping S won’t see it as a slight. I’ve explained the reasons to him, but I know I’d be devastated if S didn’t seem to want to sleep with me. I just pray he’ll never take it personally, because I need him right now, more than ever.

The pain has lessened for now. I took a painkiller an hour ago, and I’ve been smoking dope all night to try and calm the pulling feeling in my calf. It works, but it takes a lot. I can’t help thinking that I shouldn’t have to spend money on illegal drugs when there’s a health service out there… but what else can I do? I no longer enjoy being stoned. I don’t like the tightness in my chest from smoking so much, or the effects on my memory. Without it though, I’d end up cutting my own leg off.

I told my mother that I wouldn’t be upset if I somehow lost my leg in an accident. How awful is that? I hate myself for thinking that way; it’s so unlike me, and it’s a horrible thing to think of. I just… I’ve never hated a limb before. I’ve grown to utterly loathe it. I don’t recognise my own foot anymore. I can’t really identify it as mine anymore. It’s just a painful, hateful alien creature. A punishment, although I don’t quite know for what.

Everywhere I look, people are dealing with pain in rational, sensible ways. Then there’s me. Why am I taking it all so badly?

 

There is a light that never goes out

When I lived with my mother, there were often times when the only source of entertainment was to write. There are only so many cheap horror films someone can watch before they all drift into one, and only so many charity shop books you can buy before realising you’ve read pretty much every regularly-donated text. Back then, my days were entirely upside-down; sleep during the day, and lie in bed at night, typing away. It’s because of this – the ease of settling down to write in the past because the nights were impossibly long – that I’m now finding it difficult to balance my everyday life and the virtual world of my blog.

On the whole, my life isn’t much busier. Since moving in with S, I haven’t taken up any time consuming hobbies, and days rarely get so exciting that I fall into bed, exhausted. In fact much is the same; just with added domestic duties and a slightly better sense of night and day. I just find it difficult to juggle both living in a “normal” situation, and writing.

problogger.net

Now, after months of half-hearted posts and putting off the important stuff, I’m stuck in a situation where I have so much to write about that it has become an impossible task. I bypassed the guilt long ago – I’ve been looking after myself a little, for once – but now… I’ve somehow got to squash it all into one post because putting it off is only making the problem worse, and I know that in the long run writing about all this is good for me.

Not only that, but I somehow have to try and make some sense, which isn’t the easiest of tasks on 200mg of Tramadol. I appreciate this post may be a little… disjointed. Trust me, it’s nothing compared to how my mind currently feels.

When I posted the Letter To My Consultant a few days ago,  I had actually already seen him the Monday before. My mother and I travelled 25 miles by taxi to meet with the specialist who had agreed to give me a second opinion. I had expected to fight to to be taken seriously – again – but I can honestly say that he was never anything less than courteous, and I left the appointment feeling buoyed up by the simple fact of just being listened to. It’s all I needed. Someone to sit, listen, and offer advice. Once, I thought that the NHS was built around trying to help patients, but over the past few years my faith in it had slipped to the point where I didn’t even see a reason to have an NHS if they can’t achieve the most simple tasks.

Now, some faith has been restored. And all it took was for somebody to shut up for five minutes and actually listen to me.

It should never have been this hard.

I don’t yet have a diagnosis, but that no longer matters to me so much. The promise to try and control the pain is enough for now, and although Tramadol probably isn’t the smartest option for someone who fought addiction for so many years, it’s one which works, and while I’ve certainly been craving the pills, I haven’t abused them, nor do I have the real urge to. They’re important, you see. The only thing I needed to truly escape from was the physical pain, and Tramadol goes some way towards making it more bearable.

Also, S isn’t stupid. He knows of my addictions, and he knows it’s something which haunts me every day. In the past, nobody’s truly tried to take control over it, but S simply isn’t the sort of man who would let me abuse painkillers. Now we live together, it’s something I can’t really hide – the tiny pinprick pupils and staring into space are a dead giveaway – and although I know I’ll always struggle with the urge, I suspect S will never go easy on me if he finds I’ve been abusing them. I wouldn’t want him to go easy.

The consultant said that if Tramadol doesn’t work, the next step is morphine patches. Again, he listened.

So I don’t have a diagnosis, but there are a couple of conditions which are being bandied around. Rheumatoid arthritis. Psioratic arthritis. Psioratic seems more likely, based on where the pain in my fingers is and the nail loss I’ve been experiencing. Rather than just saying “well, it’s something, but we don’t know what” – which is what I’ve been hearing for years now – my consultant explained that while they may never be able to fully diagnose me because rheumatic conditions can be so complicated, they will “do their best“. In this case, that means an MRI scan, ultrasounds on my hands and feet, referral to a pain clinic, and my first full examination since I started on the journey to find out what the hell is wrong with my body. I have begged for these tests so often in the past that I assumed I would have to do the same at this appointment, but I didn’t even have to ask. For the first time, I’m being physically tested. My first set of bloods have been done. They even did a urine sample, which my local hospital has never bothered with.

 

I came away from the appointment knowing a few things; that whatever it is will “most likely be lifelong”, that I will “probably always need pain relief”, and that there are doctors out there who still do their jobs properly.

I’m okay with it being lifelong. I feel like I’ve lived a lifetime of it already, so a few more decades can’t be much harder.

Maybe now I can settle. Enjoy living here. I’ve lived with S for six months, and so much has been ruined by my health. Maybe now… I can feel okay.

Related articles

• Trying to Lower Pain Level (chronicpainandetc.wordpress.com)
• Seven million ‘take painkillers so they can work’ (telegraph.co.uk)
• Research Explores Links Between Physical and Emotional Pain Relief (psychologicalscience.org)
• Write Through Your Pain (stranglingmymuse.wordpress.com)
• Chronic Pain Management (miralahealth.com)
• Patients ‘do not trust NHS out of hours service’ (thetimes.co.uk)
• NHS is ‘not ready’ for changes, say senior staff (guardian.co.uk)

 

My little empire.

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

Related articles

• Coping with chronic pain (blogpackinglight.wordpress.com)
• Letter to People WITHOUT Chronic Pain (cherokeebillie.wordpress.com)
• Does Chronic Illness Mess With Your Emotions? (ohmyachesandpains.info)

 

“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.

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.

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.

 

And so, to hospital

I hate hospitals.

Really, really hate them.

Since childhood, I’ve been paraded around them for various reasons; hooked up to so many machines I hear the beep in my dreams. I’ve been sick on so many hospital floors, and each and every single hospital visit – be it a planned appointment or a trip to A&E – has left me a nervous wreck.

I’m not ashamed to admit this: I just can’t cope with it. The smell. The horrible lights. The feeling of vulnerability and the worry you’ll never sleep properly again. The strange faces and unpredictable noises… and the memories of the times I’ve been really, really ill. Vomiting up black stuff all over the polished A&E floor, tripping on morphine and hooked up to every piece of machinery in the world. Happily floating on a cloud of prescribed IV opiates, not giving the slightest damn about anything but going to sleep and not waking up again.

So yes.

I really hate hospitals.

But I also hate being sick. Admitting to a phobia of vomiting sounds weak somehow; it’s hardly the worst thing to happen to a person, but it utterly terrifies me. I suspect it stems from years of bulimia; controlled vomiting is entirely different to actual sickness, and it’s the lack of control I can’t cope with. Vomiting for days on end and being unable to take my meds, wash, dress myself, eat, drink, or even sleep in the same bed as S… it all took its toll, and I ended up in A&E this morning, wired up to a drip and covered in heart monitor pads.

I admit, it wasn’t the plan.

I had an appointment with my GP this morning – to check up on my medications, which need to be raised or changed, how the pain is going… I didn’t make it, because I was busy concentrating on not vomiting in the taxi on the way to hospital.

If you’ve never been scared of being sick, you can’t imagine just how terrifying it is. Every movement, every sound, every thought even… if you feel nauseous, anything can and will set you off, and it’s utterly horrible when it happens. I’ve never vomited as an adult and not had a panic attack during. It’s not a pretty situation.

So I lay there. Sat up. Lay down again. Went to the toilet a million times. Couldn’t get comfy. The only time I’ve been on my own in A&E before is when I took an overdose – the latest in a line of them in my later teens – and my mother flat-out refused to accompany me. I resented her at the time, but I understand why now. I tried to quell the panic by browsing the internet on my phone, reading boring BBC news stories about absolutely nothing, trying to pretend everything’s okay.

Also, there was an added fear. One I haven’t mentioned to anyone, not even the doctor; I figured anything abnormal would show in the blood and heart tests. A few days ago I was in so much pain – agonising, screaming pain – that I caved, and begged everyone I know to find me some ‘proper’ painkillers. Z turned up with some 30mg co-codamol and, later, a strip of tramocet. Now, I’ve spoken about my little opiate problem before, but recently it’s been pretty dormant. I haven’t felt the need to self-medicate or block things out with tiny white pills.

However, fever doesn’t work well when you’re trying to be sensible. I accidentally took far too many painkillers; I don’t know how or why I did it, just that I took more than three times the recommended dose. It was in no way a suicide attempt, because I wasn’t truly aware of what I was doing. I just wanted the pain to stop, so I could finally get some sleep.

Then, days and nights of vomiting. Sweating; that horrible chemical-tinged sweat you get with opiates. Hallucinations and awful nightmares.

So that’s how I found myself curled up on a hard bed in A&E, trying to explain my ridiculous medical history, clutching an emesis basin and hating everything hospitals are.

I just can’t cope with them.

They scare me.

 

____________________

Related articles

• Winter vomiting bug caused 1,500 wards to close (itv.com)

 

Me, I disconnect from you.

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

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.

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.

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.

Related articles

• Fibromyalgia and the New Year (cherryblossomzen.wordpress.com)
• Fibromyalgia and the Fear of Chronic Pain (everydayhealth.com)
• A Little Disconnected (morethanccc.wordpress.com)

 

“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.

 

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?“

 

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.

 

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.

 

This is yesterday

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

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

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

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

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

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

Yet, change has to happen.

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

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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.

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