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.

crying_woman

 

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.

feeling 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.

need you

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?

These wounds are all self-imposed

I fell apart yesterday. In hindsight, it was coming; there’s only so long I can keep things secret before I blow, and I just couldn’t keep it in anymore. I cried all day. I don’t think I’ve ever cried so much.

I’m not coping. There, I said it. Why has it taken me six months to admit this? I know I’ve admitted that things are hard at the moment, but not how hard – I suppose there’s still the fear someone I know will read this. You know what? Fuck them. This is my outlet, not theirs.

Depression

My Medicated Cartoon Life

I’m horribly, hideously depressed. There aren’t words to describe just how lost I feel, and I’m so worried about admitting this because I don’t want to be seen as an attention seeker. Things have… escalated, very quickly. I’ve stopped eating properly – avoiding food all day then binging at night – and the urge to self-harm over the tiniest thing is incredibly strong.

Yesterday, I had an appointment with a doctor. I’d been vomiting for three days, unable to take any medication and struggling to cope with the combination of disability and needing to run to the bathroom every five minutes. The anxiety was beyond extreme, and I could hardly speak without bursting into terrified tears. As soon as I got to the surgery I started panicking and crying, begging my mum not to leave me (she insisted on coming to my appointment because I was so on edge), and once I saw the doctor I became an absolute wreck. I explained how I hate being on so much medication, how my life had become a pathetic cycle of pills, sleep, and insomnia. It went… okay, I suppose. I have another appointment in a week – I assume to check I haven’t topped myself – and I’ve been taken off the anti-inflammatories because my stomach’s utterly destroyed, and been given a much lower dose of the anti-depressant to stop me withdrawing. Duloxetine simply isn’t working for me, so we’re going to try putting me back on Cipralex next week in the hope it’ll stop the panic, or at least control it a little. It used to work wonderfully, and I was useless without it.

Dylan Moran

It took until 1am for me to finally break down in front of S. I haven’t really spoken to him about my mental health – it’s something I’ve always wanted to keep separate from our relationship – but last night was impossible. I simply couldn’t stop crying. I tried to go to bed early, but just lay sobbing in the dark. Eventually, I wrapped a blanket around myself, walked into the living room, and said, “is it okay if I be an emotional wreck in here with you? I’m not keen on doing it on my own”.

He was amazing. We sat on the sofa, his arm around me and my head on his chest, and I told him everything. Not about the tablet abuse, but I think he knows about that anyway. I told him I couldn’t see a future; not just between us, but no future at all. I was too scared to even try looking forwards because everything fucks up eventually. Truthfully, I’ve given up. There have been times recently where, if someone had offered me a quick and painless way out, I’d have taken it.

Somehow, its harder now that I want to make something of myself. In the past, I wasn’t bothered because I didn’t believe I would ever amount to anything, but now… I want a life. I want to go out and see people and speak to other humans. I want to be able to use public transport without having to put mental blinkers on so I don’t panic. I want to be able to eat normally, and sleep properly. I just want to be something close to normal, whatever that is. I want to feel okay.

.

 

There and back again

During my brief* flirtation with cognitive  behavioural therapy, I found my first stumbling block to be the advice I was given to follow when I’m having a panic attack:

“Remember, it won’t kill you“.

Really? Because that’s not how I felt last night.

Terrified Woman Screaming

Images.com/CORBIS

Of course, it all worked out fine. It always does. This is the frustration; I know nothing terrible is likely to happen, but still I obsess and panic until I can’t see straight. Throughout my life this has happened hundreds if not thousands of times, and while bad stuff undoubtedly does happen… has the world ended yet? No.

I’m sick of not being able to make sense of myself.

Talking of sick, the Tramadol made me vomit. Penance, I guess.

 

*one session. I’m amazed I lasted that long.

So why don’t you slide

Earlier, S asked if I fancied a takeaway – curry from our favourite restaurant – and I agreed. Later he went out with a friend to buy some tools. They’re working on the basement beneath our flat, as technically that’s included in the rent. It’s currently filled with the last owner’s belongings; stacks and stacks of paintings, canvas, frames, lamps, chairs, books… Bob was a hoarder, and a painter. His work’s pretty good actually. Now he’s dead and his wife is in a nursing home (she went downhill very rapidly when he died), somebody has to clear it all. The basement is pretty big, taking up most of the floor space of the house, so it’s a mammoth task.

Anyway, while they were out I got a call from S. He asked me if I wanted to go to the restaurant with his mates instead of getting a takeaway.

Did I do the right thing when I said, “it’s okay, I’m not up to it. You can go along anyway”?

I wasn’t lying. I’m truly not up to it. I tried going for a short walk earlier, and by the time I returned, I was struggling to breathe and sweating like crazy. It’s been so long since I’ve had ‘proper’ exercise. That walk used to take me five minutes. Today, it took thirty.

Straight away S’s tone changed; the first time I’ve ever really heard it do so. He said, “oh. Okay. But we were going to have a takeaway.”

I shrugged him off, “it’s fine, I’m really, really not up to it. We can do it another time”.

He agreed, but… he didn’t sound happy. It’s only when I ended the call that I began to feel that familiar twinge of panic.

Image

Oh god. Oh god oh god oh god you fucking idiot oh god oh god.

I have never once done something (to my knowledge, anyway) to make S angry or disappointed. Unlike my relationship with O, I’ve managed to keep my irrational emotions in check; at least until I’m alone. I’m so determined not to fuck this up. I know it’s classic BPD to say, “oh, I love him so much, he’s my everything, I want to be with him forever” but all that’s got me in the past is a string of disastrous relationships and far too much bitterness. I almost have my head around that now, and the medication certainly helps me keep the more extreme aspects of my behavior in check. So while I know that these feeling might be BPD tricking me and that mental illness has a habit of making me cling to somebody like fuck… I want to believe this is real. I’m pretty sure I know, deep down, I love S with all my heart; how could I not? He’s the only man who has never condescended me. Who has never given me reason to suspect him of wrongdoing. The only man who I’ve felt comfortable enough with to let the mask slip.

I know I love him.

And now I’m scared.

scared-woman

So what did I do? I went straight for the Tramadol.

I’m now sitting at the kitchen table, trying and failing to calm myself with a joint. The urge to crawl into bed and hide under the duvet is overwhelming.

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.

writing-tipsproblogger.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.

Lot 40 - Alison Englefield Headings -Paranoia

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.

urine specimen

 

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.

A letter to my consultant

Current medications:
Propranalol Hydrochloride (80mg daily) – for anxiety and panic attacks
Lansoprazole (30mg daily)
Etoricoxib (60mg daily) – for inflammation
Pregabalin (300mg daily) – for fibromyalgia
Duloxetine (90mg daily) for pain, depression and anxiety.
Dianette – contraception and treating polycystic ovary syndrome

Recent medications:
Cipralex – for depression and anxiety
Celebrex – for pain
Omeprazole
Prednisone (12 week course to treat chronic eczema)

Past surgeries:
Four wisdom teeth removed
Laparoscopy (to investigate painful periods and bleeding) (2007). Laser ablation done at the same time to treat inflammation in cervix.
Cholecystectomy (2008)

Current diagnoses:
Synovitis in left ankle and inflammation of tendon at side of foot (originally misdiagnosed as achilles tendonitis 18 months ago), diagnosed approx. 6 months ago.
Pompholyx eczema/dyshidrotic dermatitis (diagnosed in 2012)
Polycystic ovary syndrome (diagnosed in 2001)
Fibromyalgia (diagnosed in 2006)
Irritable bowel syndrome (diagnosed in 2002-ish, originally treated with Mebeverine but currently under no treatment due to side-effects)
Depression and anxiety (first diagnosed at the age of thirteen) and Borderline Personality Disorder.

Current symptoms:
Pain and stiffness in fingers, knees, upper neck/base of skull, hips, feet/toes, lower back and wrists. Fingers, knees and toes most affected, although neck is becoming much worse. Pain and stiffness much worse in morning/after sitting still, and takes at least 2-3 hours after waking to begin loosening. Gentle movements seem to help the pain in most joints.
Unable to bear weight on heels for 2-3 hours after inactivity.
Swelling in fingers, toes, ankles and knees after waking/inactivity, especially in joints closest to nails in fingers and toes.
Clumsiness, especially in morning. Unable to grip items with confidence, especially pens and cups.
Fingers and toes have become misshapen over the past 18 months.
Weight loss. This is a particular concern for me as I haven’t dieted, although my appetite has decreased dramatically, again over the past 18 months. Since September 2012 I have lost almost three stones in weight, which is very unlike me as I have always struggled with keeping my weight down and I love food.
Recurring cold sores.
Itchy eyes and very dry mouth, which seems unconnected to medications.
Lack of temperature control. I have suffered from this for a number of years, but only at night. Recently it has become an issue throughout the day also, leaving me either far too cold, or far too warm. Fingers and toes always feel painfully cold regardless of weather or environment.
IBS has become much worse in the past 18 months, with constant diarrhea, cramps and loss of bowel control.

I have been referred to orthopedics, physiotherapy, rheumatology at SDGH, and to the local mental health team all regarding my symptoms. Because the pain and swelling in my left ankle was misdiagnosed as achilles tendonitis, they have only concentrated on that area of my body, and not taken the whole range of symptoms into account, which I feel are connected somehow as all my symptoms either appeared or became worse around the same time.
Emotionally, this has had a huge impact on me, and my life. I am no longer able to live independently as I need somebody around to ensure I have help with basic tasks (like cooking, taking a shower, and walking), as co-ordination and balance are something I struggle with a lot now. I am no longer able to go outside on my own in case I fall or am unable to bear weight on my heels. As a result I am now almost entirely housebound and even though I have bought a walking stick (after physiotherapy claimed I didn’t need help with walking), this only causes pain in my hips and neck as I try to balance with it.
I feel that if I could at least have a name for what is happening to me, I would cope a lot better, and possibly find a treatment which may help. Currently, I have lost all hope of ever leading a normal life, of being able to work. My hobbies all involve movement (walking, sewing, knitting, photography) and I am no longer able to do these things, and the rapidly increasing pain in my joints leave me unable to do the most basic tasks such as hold a pencil (I am also a writer) or comfortably type on a keyboard without wrist pain.

My little empire.


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