The snappy biting black dog

Last night, I realised something. That in itself isn’t special – I realise a lot of things at night – but I finally understood why I’ve been so reluctant to update this, and it’s a reason which makes me angry. Angry, because I allowed myself to feel scared and worried. Angry because I lost the trust I spent years building – the trust which eventually led me to feeling able to write everything down in a blog. The trust which said, ‘I don’t care what people think’.

It turns out I did care, more than I could have known. It’s not lack of time or energy, it’s not a lack of something to write about. It’s simply… I still feel broken in ways by somebody sharing this blog when they know I write anonymously. When they surely knew that the subject matter was incredibly personal and if I’d wanted it shared I’d have done it myself. Every time I have sat down with the intention to write, I find myself becoming paranoid and shutting my laptop down.

 Image

It all comes back to paranoia. Part of me wants to shake that person; scream in their face. However, I know it’s pointless because the damage has been done and they will never, ever understand how I think and feel, and clearly have no desire to. Personally, I would never share anybody’s mental health tale, but is that just me? Has social media made it so that everyone has a right to poke and pry? I always knew there was a chance somebody would find this blog but I assumed it would be a family member or friend; somebody I knew well, who already knew about my past and would understand at least some of how I communicate and respect that. I never suspected it’d be a virtual stranger who barely knows me, somebody who shouldn’t even have an interest in what I’m doing or saying. It feels horrible; every time I sit down to type there’s a squirmy black worm wrapping itself around my words and reminding me that I’ll never be safe. Since safety is what I’ve always craved and fought for… it’s difficult. I want to ignore it because it’s none of their business what I say, but my brain just doesn’t want to accept that.

I had almost forgotten. I decided to let this blog and the hours of work and difficult words go, and move on. However, maybe I don’t want to move on. Maybe this has always helped me, and I should be doing what’s best for myself regardless of fear.

ImagePart of my need to write regardless is down to an utterly wonderful woman – M – who has been my therapist for a while now. Last week we had our last session and a relapse prevention, and part of the prevention comes down to not letting things build up and explode in panic and irrational behaviour and my way of doing that has always been to put my feelings into words. M has been encouraging me to bring back helpful things into my life and discard the useless; to believe that I’m capable of doing so. When I was first referred, things were… difficult. I had developed full-blown agoraphobia. My flat had become my prison and I only went outside to attend hospital and GP appointments. Stepping out of the front door was the most terrifying thing I could possibly do, and it’s not that I didn’t try; I did, over and over, but just didn’t seem to have the ability. Agoraphobia is a frustrating condition, because there’s absolutely no logic to it. Logically, I knew nothing bad would happen. Logically, I knew that having fellow humans see me wasn’t the end of the world. I like logic and despise anything which is entirely illogical, and so I grew to despise myself and my inability to do normal things like buy a pint of milk. M helped me see that I was reacting to an impossible situation – physically I had been forced indoors by the arthritis, and that gave my brain plenty of time to create fear which didn’t actually exist, so when I became more mobile I found myself stuck between wanting to live a normal-ish life and wanting to hide from everything which seemed so horribly unbearable. It’s a silly thing, really. The world isn’t that scary. My street certainly isn’t. Yet for the longest time I couldn’t even look out of a window without feeling sick at the thought of stepping outside.

I’ve had agoraphobia in the past, but never at this level. I always managed to cope somehow before, putting my mental blinkers on and just barrelling through life as best I can. This time… this time, I found myself leaning against the front door after S had left for work, banging my head against the glass and wanting more than anything to be able to follow him into the world, yet totally unable to. Opening the door was like throwing myself off a high cliff; my body and mind simply said ‘nope’ and shut down.

ImageSlowly, over time, things have improved. I can now go outside alone, although walking to the shop down the road is still difficult and I’ll make excuses not to. I haven’t been near public transport since last Summer. One of the main goals I currently have is to get on a bus; such a simple thing, yet I still don’t feel brave enough. M has helped me understand why I find it so difficult, but it’s still frustrating. I live close to the railway and could go anywhere if I wanted, but all that seems so far away, so impossible. I spent an hour in the garden today, and that was pushing it.

Even now, as I write this, I’m trying to censor myself despite knowing it shouldn’t matter. After all, what’s the worst that can happen – people know I have a personality disorder? It’s not as though I’ve been murdering anyone, I haven’t done anything wrong. That’s what I keep trying to tell myself, but there is always that split part of me laughing at my paranoia and pushing my buttons. I suspect some people will never understand the concept of true paranoia and unrelenting fear and just how horrible it feels; otherwise they’d leave me be.

Heck. I doubt they’re even reading this. I know that in reality I’ll have been long forgotten. If someone were, would it really matter? What are they going to learn about me – that I have a mental illness? That’s nothing special, plenty of people do.

Still. Just typing ‘I still want to self-harm every day’ scares me. I want to be honest. With myself and with the readers who have been incredibly supportive. I know some of you are still looking in, and I appreciate the comments asking if I’m okay after such a long period of silence.

I owe myself that honesty, it’s just difficult untangling it from the snappy biting black dog.

 

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

My bed feels larger than when I was small

 

I’m tired of struggling through every day. Of pushing and pulling and forcing myself to at least seem okay. I’m tired of speaking and having the words come out jumbled before they can even leave my mouth. Of sleeping only when beyond exhaustion. Of making excuses. Of seeing the sunrise every single morning, having been awake all night. Of not being able to find a single bit of beauty in it.

Today, I broke all my personal promises and posted my feelings on Facebook. Oh, not the big stuff – that’s for here only – but I went into far more detail than I’ve ever felt comfortable with, and I’m still not comfortable with it now. I only did it because I can’t take unrealistic expectations anymore; I have never, ever been able to cope with being expected to act a certain way and, truthfully, I’m sick of pretending.

I was pulling myself out of it, with the help of antidepressants which have been proven to work for me. I was trying really goddamn hard, and I was almost there. I’d started eating normally again, and having showers. Things seemed to be on the up emotionally, even if they weren’t so great physically.

Then… just one little thing. That’s all it takes.

I don’t even know what that little thing was. All I know is I’m sitting on the sofa after leaving S in bed. I cried all day. I realised I just can’t take this. Everything. The pain. The sickness. The tiredness. Any of it.

 

world

I’ve been vomiting again, and the conclusion my mother and I came to is that it’s stress. Truthfully, I accepted this explanation because the idea of facing just one more doctor is too much to bear. I’ve thought about it throughout the day though, and I realise it’s probably true; even on days when I don’t feel like a total emotional wreck, I’m still terrified of what will become of me, and it’s like a ball of pure acid in my stomach to even consider the future.

Can I even see a future for myself?

Not really.

I’m relying on those closest to me – my mother, S, and a couple of people I’ve come to call friends – to keep me afloat, because if left to my own devices I begin to sink almost instantly. I can no longer talk to Z about any of this; it became apparent a while ago that we’re probably never going to be on the same page when it comes to life.

Just like last time, the vomiting has kicked off feelings I’d rather not have; feelings of calorie counting and tape measures. Truthfully I hardly need to worry about such things since eating has become incredibly difficult with the constant nausea and risk of sudden projectile sickness, but something inside decided to worry about it anyway. I’ve lost a lot of weight without even trying over the past few months, and you’d think I’d be ecstatic but instead I almost feel cheated because I didn’t do it myself. So, yet again, I grab for control.

I don’t even believe my own lies about having control anymore. I know nothing I do gives me the slightest safety.

 

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.

 

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.

.

 

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”