So I’ll start a revolution from my bed

There is absolutely no point in forcing yourself to write a personal blog if you have more important things to worry about, and those worries have been the reason behind the long absence between posts. I have missed this blog dearly; although I knew it was helping me I didn’t realise quite how much until writer’s block hit and life got somewhat in the way. That’s not to say I haven’t had time – I’ve had plenty, more than I can begin to visualise – but that time has been taken up with difficult sleeping habits, medicine regimes, appointments, depression… I’ve experienced the full range of, well, everything recently.

Seronegative symmetrical psoriatic arthritis. Somehow, even the name sounds complicated.

Throughout the past couple of years I’ve often wondered how I would feel if it did all turn out to be real. For even though I’ve had very clear physical symptoms and (eventually) positive X-rays and an MRI, there has always been a small voice in my head saying, “but you lie. You always lie”. All the doctors who wouldn’t listen and the people who suggested it may just be overreaction on my  part… they were wrong, and I was right. It’s a strange feeling for somebody who isn’t used to being right.

 

wta3

Now feels like the right time to begin writing again. A month after my diagnosis, and I’m just about beginning to pull things together. There’s a lot to concentrate on – I’ve been put back on steroids (Prednisolone, this time) and have also been put on a course of Methotrexate, along with Fentanyl patches (which refuse to stick in this heatwave but otherwise they’ve been fantastic at dealing with the ankle pain) and codeine still if I need it. I have varying specialists dealing with my case, a nurse, and am also attending a pain clinic for physiotherapy, counselling and relaxation, as well as any medications/pain relief if needed. Everybody has been lovely, from the rheumatologist who diagnosed me to the occupational therapist I saw on Friday morning. The difference from simply changing hospitals has been enormous, and I’m so thankful to my GP for understanding why I no longer had any faith in our hospital. The time from first seeing the new rheumatology team to diagnosis was two months. My local hospital achieved nothing except further damage in over two whole years, all because they never scanned me.

I haven’t quite accepted the diagnosis yet; I suspect it’ll take while. Although I knew something was wrong and even though I considered inflammatory arthritis as a possibility for a long time, nothing quite feels real yet. However, I don’t feel the sense of hopelessness which has dogged me for months and months; a weight has definitely lifted, even if newer weights have been added at the same time.

I am trying not to look at the past year as a waste, but I must confess to feeling resentful; I spent a year unable to walk without extreme pain – and, over recent months, have been unable to walk at all and have spent my days indoors relying on crutches to get to the toilet) – and I do feel cheated. All it would have taken was an MRI. All they had to do was listen to my history. They didn’t though, and as a consequence I have lost a year of my life to pain.

It’s hard to know where to start rebuilding.

 

building-a-wall

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.

sleeping in black and white

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.

codeine

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.

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?

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”

“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.