We came along this road

The journey back isn’t a Hollywood blockbuster. There are no explosions. No world-destroying earthquakes. Denzil Washington doesn’t turn up with a cartload of braille Bibles to point out the right way to go. There are no maps. No signs. You are entirely alone in the quiet, unassuming task of getting back on your feet, and the act is nothing spectacular. It doesn’t warrant any fanfares.

In Terry Pratchett’s Discworld, there is a Dark Desert, with miles and miles of “brilliantly-lit black sand, under a black sky studded with cold bright stars, stretching away to distant mountains (where judgement awaits).” Thousands of souls pass each other, all walking the same desert, but they never see each other. They just keep walking towards what they hope will happen, locked in their own time.

For a while now, I have been, metaphorically and physically, taking that long walk back home.

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It began with Autumn arriving. Almost overnight, the leaves on the horse chestnut tree next door began to turn a bright, yellowy-orange, and the fir in the front garden began to turn blue in preparation for winter. Red berries briefly appeared on the bushes near the driveway before being eaten by fat woodpigeons, and the nights began smelling of leaves and bonfires; the sea air feeling chilly in the dead of night, a cat cuddling up to my dressing gown for warmth.

After a successful cortinsone injection into my ankle joint, walking has become much easier. This is the second one which has worked; and it’s worked miracles. Today, on the way to the back garden, I kicked through some leaves to entertain Stimpy. This time last year that wouldn’t have been even close to possible, and I’m very aware of the difference both cortisone and Methotrexate have made to my life.

I’m not running marathons; I still need the stick for balance and still struggle to pick things up. S still has to do most of the cooking, although I’m helping more and have cooked a few meals alone recently. I still have bad days. My health is currently compounded by Methotrexate doing the exact job it’s supposed to do; suppressing my immune system, reducing the white blood cells and calming the inflammatory response when my immune system attacks the joints.

That side of it has worked very well and I have far more movement in my fingers, neck and wrists than I did even a few months ago, however, lowered immunity means bacteria and infections have almost free reign and infection can be very difficult to treat. I’ve found this to be the case for a while now, with repeated infected cysts and tooth abcesses – which require constant antibiotics as the infection returns as soon as they’re stopped – as well as mouth ulcers, swollen gums, losing clumps of hair to the shower drain, and difficulty urinating.

It has increasingly been a case of weighing up the pros and cons of taking a disease-modifying anti-rheumatic drug, but so far the ability to walk and go outside (the wheelchair was causing me too much anxiety; I left it at my mother’s house) and have that small shred of indpendence back is more than worth dealing with anything Methotrexate can throw at me.

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So. Slowly, the road is leading me back. It’s a little scary to know how long I’ve felt… muffled by life. With hindsight I can see how the combination of moving in with S after living with my mother – albeit with brief breaks – in the same house since I was born, the psoriatic arthritis symptoms becoming chronic, difficulty getting diagnosed again, so many tests and hospital appointments I lost count, all built up to set a sequence of events in place which, really, I should have seen coming. I have never dealt well with crisis.

Moving away from my mother was emotional in a few ways; my time at the quiet suburban semi was often fraught, she and I fought like cats, refusing to budge on any subject until I became uncontrollable and set to destroying whatever I could get my hands on (my early teens) or saying the worst things I could possibly think of (my later teens) and the majority of the time I lived there was spent sequestered in my bedroom like a hermit, refusing to come out except to go to the bathroom, binge, or, in the later years, smoke. Sneaking down at night to use the phone to call whoever I happened to be dating at the time, trying to break into my mother’s bedroom – she installed locks – to find my confiscated medication.

I slept all day and tiptoed around like a ghost at night, flicking through Teletext at 3am, smoking out of the window, eating everything I could get my hands on and purging silently in the garden.

Despite our lack of relationship, I was nevertheless hugely reliant on my mother even if I didn’t believe it at the time. Without me knowing, she steered me through the important parts of life; albeit in a way which wasn’t always right, but she always tried. A few years ago my mother stopped speaking to my brother, C, after he never repaid her a large debt despite being able to, and yet she has never given up on me despite the years of carting me to psychiatrists, sitting in the ambulance with me on the way to A&E after overdoses, the shouting, the ignoring, sitting up all night waiting for me to come home as the police helicopter passes over me, never stopping.

She says the difference is that I try to fix things.

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I am back in therapy. Somewhere along the road was a stumbling block and I was too busy enjoying my new-found freedom to notice before walking straight into it. Overnight, agoraphbia strolled back in and set up camp without so much as a greeting and, as a result, I am back to sending S on small errands I could do myself and staying indoors for days if no appointments are due; however, I’m adoring being outside once I get through the front door. This is new for me, and I’m not sure how to make myself go outside even though there’s nothing I want more than to put my boots on and crunch through the piles of fallen leaves down the street into the village.

Despite this, the future looks bright. Or brighter, at least. For the first time since I can remember, thoughts of a possible future are beginning to creep in. Reading has become pleasurable again after being used as a distraction from unwanted thoughts and crippling boredom for a long time. S and I bought a new mattress and we’re back to sleeping in the same bed every night; he kisses me in the morning while putting his shirt on for work and I wonder how I didn’t go crazy sleeping in the spare room without him, with just the cats for company. I suppose I did in a way.

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I had a meltdown. That’s why I’m back at therapy, really; my GP referred me after seeing the cuts I’d made on my right arm with a scalpel and hearing from my mother – I couldn’t find it in me to talk and needed somebody by my side – how I’d “spiralled downhill” since a difficult hospital appointment and overhearing an argument between S and a friend in which my so-called friend called me “lazy” for being unemployed; despite him having witnessed the illness at its worse on a number of occasions. There was more to it than that, but… I flipped. Took a scalpel and  harmed myself for the first time in, well, a long time, and certainly the first time since moving in with S. I have never self-harmed with him around, and when he came inside and saw me sitting on the bed with a bloody towel inexpertly wrapped around my arm and mascara everywhere, he panicked and we argued. We both said terrible things.

We made up and the relationship actually feels even better, but ever since that day I’ve been struggling in a number of ways. Friendships are becoming difficult again; S and I are invited to a close friend’s wedding on Monday and I’m terrified of having to cope with, well, other people. Even those I know. I worried I won’t pull it off. It’s a long time since I did anything truly social and since I stayed away from home for the night (we’re staying in a hotel) and I suspect I may be more nervous than the bride.

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I don’t  know. I’m just trying to grab any shred of confidence and push along the road, because what’s the alternative? Another year in bed, on the sofa? Another year of sleeping through the day, seeing S only briefly in the hallway? That was never what I wanted, and nor was hiding inside my flat day after day, week after week, nervously emerging only for appointments and to see my mother once or twice a week.

It feels better to be on the road than off it.

Brother and Sister

Late last year, Z told me of a friend who was looking for a home for his two cats. Both a year old, brother and sister, one ginger and white, one black and white. S and I had been considering getting a cat for a while but always put it off due to my concern that the physical issues would make caring for them difficult while S is at work all day; I’ve found looking after myself hard and have had to forgo showers and basic self-care at times due to the stiffness and pain.

However, I admit to falling in love. I grew up with cats always in my life and since Molly died of kidney cancer years ago I’ve been reluctant to go through that pain again. I’ve always known that a cat is what’s missing, though. Over the next few days S and I weighed up the pros and cons and came to a decision – that the positives would outweigh the negatives and I had plenty of support if I found caring for them difficult.  We decided to go for it.

A week before Christmas, Stimpy and Magrat came to live with us.

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I am in love; two cats have never been so adored. Aside from a major anxiety freakout when Stimpy went missing for three days, the negatives have never materialised – in fact, caring for them has made a huge difference to both my mental health and my mobility. Agoraphobia is a lot easier to deal with when you have two silly creatures trotting after you, and I no longer feel lonely during the day. Feeding them forces me out of bed and onto my feet, and even on my worse days I have very little choice; which makes a huge difference to how I deal with the hours stretching in front of me.

In such a short space of time, they have turned my world around and shown me that giving up simply isn’t an option. I can no longer lie in bed all day feeling sorry for myself, and that can only ever be a good thing.

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.

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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.

 

All these things that you don’t know. It seems so much better that way.

Even now, despite everything, there are things I cannot and will not say.

 

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After the years (and it has been years, now) of tests, needles, white blood counts, pissing in little bottles, waiting, sleeping in my own sweat, painkillers, vomiting and counting the isolated days, there are still things I don’t want to admit to.

The ulcers. Deep in my cheeks. On my gums.

The dreaded nausea, keeping me awake. The vomiting.

The itchiness. The sore throats. The coughing. The headaches. Chest pains. Shortness of breath. Dark, sickly urine. Stomach cramps.

All these things I am supposed to tell a doctor about at once, but part of me – the part which is stronger, more willing to fight – refuses to confess, because they are all symptoms which mean the methotrexate may not be treating me as kindly as the doctors had hoped, and all symptoms which may mean the treatment needs to be stopped immediately. I know it’s far from sensible, but what can I do? In the past few weeks, the pain and swelling has reduced dramatically. I can walk again. I. Can. Walk. Again. I can make a cup of tea. Sleep without being woken by knives digging into my skin. I can have sex with my boyfriend again. I can put a sheet on the bed. Shower when I need to – mostly. Arrange a bunch of flowers. Fasten buttons.

All small things. All things which matter.

Without the medication, I am nothing once more. I don’t want to be nothing.

Bed.

I’m hoping that eventually my promise to keep up with this blog will come good. For now… perhaps not. Everything feels hectic. Recent comments I have received on old posts have knocked my confidence. I’m just still so tired.

I have an appointment with my GP early tomorrow morning. S is asleep right now, full of cold. Bed seems to be the answer. As usual.

Got me on some medication

As of Friday, I’m back on the methotrexate/folic acid. I can’t say I’m looking forward to the side-effects again, and the thought of going back to spending the weekend wrapped in a blanket, simultaneously freezing cold and boiling hot, fighting down nausea and being more fluffy-headed thinking than usual is bringing me down. There’s already been so much sickness.

But what can I do? I made the decision to take the drugs.

On a weekend I wanna wish it all away, yeah.

Day one of no prednisolone has been a small disaster. With most drugs, the effects stay in your system for a little while, but my experience with steroids has been very different; the day after the final dose is taken, everything returns. It’s what happened with the rash on my hands and feet. Less than 24 hours and I was covered again. So it’s no real surprise that today revolved around a renewed pain and stiffness – especially stiffness. I’d forgotten how limiting it can be.

I’ve been sleeping in the spare room recently, and last night was no different. There are a number of factors as to why – the air is cooler in there, the little white single bed has an orthopedic mattress, I feel safe surrounded by “my things” (it’s almost a copy of my old bedroom at my mother’s house; entirely subconscious on my part but it does give me a recognisable haven to retreat to) and I also feel safe knowing the only person to witness the pain is myself. After all, just because it now has a name and a reason, doesn’t mean I’m not still somewhat ashamed to be seen squirming around like a wounded animal. I feel horribly like a burden when S hears me complaining, so I try to limit how often I open my mouth on the subject. It’s difficult. On days such as today it envelopes my entire being.

 

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So. S and I have lived in the flat for almost a year now. Crazy how time passes in such strange ways. The last twelve months have been some of the hardest of my life, yet I got through it somehow. I confess to having no idea how that happened, as I’ve been stuck behind walls of varying painkillers, watching the world go by. As it is, the morphine is doing very little for the ankle pain – the discomfort and stabbing feelings seem to come from inflammation, and it’s only going to get worse now I’m off the prednisolone. I can’t take NSAIDs either. My mother is going to speak to my rhuematology nurse next week to see if there’s anything at all they can do before I see the consultant in October.

I’m just not convinced I can keep doing this. Waves of pain. Brief relief, then it all comes back, worse than ever.

I’m feeling a little despondent.