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.

walking-home

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.

methotrexate

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.

bamboozle

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.

sleeping-alone-black-and-white

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.

nerves

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.

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.

 

In which I didn’t die

When you have a fear over something – be it general anxiety, agoraphobia, spiders or – in my case – being sick –   you’re often given the advice “remember, you won’t die”.

On the surface it’s good advice, and very true. CBT (or my experience of it) focused on that a lot, and I can imagine most people who don’t experience such extreme fear see it as perfectly sensible advice which can really help. So I don’t begrudge those who tell me this; apart from those in the psychiatric profession, who should know better, because it’s all well and good saying “it won’t kill you”, but anyone living with fear knows that there’s absolutely nothing rational about the red-hot tangle of despair and terror.

But, I didn’t die. I stopped being sick once the anti-emetics kicked in, and I’ve been able to eat without feeling nauseous. I’m still scared of the idea of it starting again, and there’s a huge bruise on my  hand from the IV, but I didn’t die. I’m okay.

Somehow, it always ends up okay. I don’t know how.

moving on

Paranoia

Eventually, I slept. Uncomfortable, sweaty sleep; the kind where every nice dream has a hidden monster and you wake every so often, afraid of the dreams but fearful of staying awake. Sleep which does nothing to ease the fatigue, and probably contributes to it.

Yesterday I told my mother that I didn’t want to look at the newly-refurbished market, or go in Superdrug, or buy anything from Boots. Avoided TK Maxx and insisted we have coffee outdoors, all because I couldn’t stand the feeling of being watched by everyone. Paranoia is raging through my head at the moment, and there seems to be little I can do to stop it apart from avoiding public places

When I lived with J, I became agorophobic. Not of open spaces… just of people. Eye-contact became a nightmare of “what are they looking at? Is it the piercings? Do I have mascara down my face? Is it because I’m ugly?”. I did try to go outside for a while – forcing myself to speak to shop assistants even though I was sweating and shaking – but it just didn’t work. The space outside of the front door became the enemy, and I locked myself away rather than face the stares and the comments I never heard, but knew people were saying cruel things as I walked past.

 

It’s easy to hide, you see. Since I moved back in with my mother, my bedroom has become a fortress; a sort of physical representation of the wall I’ve been building around myself since childhood. When life becomes too much to deal with, I can retreat to the safe space, knowing nothing can truly hurt me when I have my belongings around me and familiar things I can touch. It grounds me. Knowing where things are going to be and having everything just as I want it… it’s a security blanket.

I’m starting to give in to the paranoia again. It’s always been there – there’s never been a time where I don’t believe strangers are staring at me and weighing me up – but recently… it’s blossomed. A rise in anxiety was always the risk with taking Lyrica, and so far I’ve been weathering the growing storm as best I can, but it all feels like it’s becoming too much now; I don’t have time for it. I don’t want it.

Which is why, when S and I are settled into the new flat, I’m going to ask my GP about speaking to a psychologist. This is a big thing for me – I’ve had such negative experiences with the mental health system that I lied to the last specialist I saw and told him everything was fine, just so I didn’t have to go through with all the shite – and to be honest, I’m scared. I coped on my own for so long, and I thought I was doing well… but I’m still having delusions. Still hearing the voices.

I need someone else’s take on it.

A letter from Stephen Fry, and Pinterest

I finally managed to get a Pinterest account last night, thanks to another blogger; about time too! I’ve been trying to join for ages but it’s never accepted invitations.

I have no idea what I’m doing; I just know it’s addictive. I can’t stop clicking. Damn my need to join in.

I’m waiting to go to town with my mother. Thursday is shopping day (also the day my benefits go into the bank) and for as long as I can remember, I’ve always helped her. I think in a way it’s a habit of hers; she’s always done it, so she continues. I do also wonder if perhaps she has some form of agoraphobia. She’s never really socialised much, and stays in the house most of the week. We used to go for walks together, but our combined aches and pains have put paid to that.

We also have to go to the garden centre outside town… I’m dreading it. I can’t pretend to enjoy wandering around looking at plants.

 

I’m learning to walk again, I believe I’ve waited long enough

Spent most of the night wasting time online, reading other blogs and smoking. I never sleep well the night after I leave S’s house; I miss having his arms around me when I fall asleep. I know, soft isn’t it? I’ve never liked sleeping in the same bed as somebody else – I move around a lot, kick, flail, get too hot then too cold – but sleeping with S has never been the problem it always has in the past. He just has to put his arm over my chest and dig his nose into my back, and I’m calm. I sleep like a baby.

In contrast, most of today has been spent catching up on the sleep I missed last night. I did manage to get out for a walk (admittedly, I was forced to go because tobacco supplies were running dangerously low), wander down the embankment near the marshes and actually get out on my own for once. It’s been a long time since I felt able to go for any real kind of walk, but the sun (it’s been another hot, unseasonal day) buoys me up significantly.

I paid for it, of course. Aching legs and a headache. I used to walk miles every day without thinking about it; now all I can manage is a trip to the shops. Sometimes, that’s a really depressing thought.

I’ve never been particularly into fitness, but in my childhood I ran around a lot. In my teens, I walked constantly, wandering for hours. Early twenties, I’d make myself go out every single day for long walks along the sea front. I love the freedom of being outdoors, which is strange considering my agoraphobia; you’d think I’d hate the wide-open spaces and being able to see right across the sea. I don’t though; it’s only people I can’t stand. On my own, I’m in my element. I miss having that freedom now, and feel almost cheated that it’s been taken away from me by chronic pain and fatigue. I want to try walking again – today’s attempt could have gone much worse – but I’m worried by my limitations. I still don’t know when to stop, how to conserve energy for the rest of the day.

Sometimes I worry this is all I’ll ever be able to do. That my strength is gone.

I still don’t have the guts to weigh myself. I should have done it two weeks ago, but I’ve been putting it off in case I somehow weigh more or haven’t lost anything. I’ve been controlling the binges quite well, and I’ve stopped eating in the middle of the night, and along with loosely following the Slimfast diet I think I may have lost a couple of pounds but I just don’t dare go step on those scales in case it sets off a series of events I can’t control.

 

I blame you for the moonlit sky.

In hindsight, I don’t know why I was so stressed before. I came back home from a night out with S (more about that later) to re-read and publish the draft of my last post. There were so many spelling mistakes, so many words running into each other… I haven’t been so on edge for a long time. I confess; I’m still not taking the beta blockers properly. I try to, but I just get so muddled with all the medication I’m taking, that remembering to take them three times a day just slips my mind. I need to get a grip on that; I can’t afford to lose it again.

I’m glad I didn’t do anything about the urges to harm myself. I was so happy this evening, that knowing I had evidence of a freak out on my body would only have brought me down.

S got paid today, and he met me in town. I got the bus, for the first time in months; it seems a silly thing to be proud of, but I’ve been so uncomfortable with social situations lately that it feels like a huge achievement. I even made an effort; wore a maxi dress and boots, did my hair straight, took care with my makeup. I still felt itchy and exposed, but I’m beginning to accept that I’ll probably always feel that way. I’m no superwoman.

Bought some cigarettes, went to Boots and allowed myself a brief look at the makeup (I don’t like the mirrors, they make me nervous) and bought two nail varnishes, before waiting for S at the monument. It sounds childish, but I get so excited when we’re meeting, and when I saw him walking towards me in his nonchalant way, I had to stop myself running over to him. He looked gorgeous; even more so than usual. I still can’t quite believe he’s mine.

After a few drinks in the pub, we went for a curry. I’ve discovered lychee and banana curry, possibly the nicest (and strangest) thing I’ve ever tasted, and for once I didn’t give a damn about any diet or weight. I just enjoyed spending time with the man I love, in a nice restaurant, talking about the education system and my mum’s continued insistence that I have a drinking problem. Not for the first time, he said, “you need to get out of there”, which I know is true. I just wish it were that simple.

After the meal, we played pool in a deathly quiet pub, spurred on by Phil Collins, Nilsson and Jeff Buckley. The quiet pubs always have the best music (although S doesn’t share my adoration of Buckley… he’ll learn).

Finally, we walked to the lake, hand in hand. Lay on the grass together, his arm cushioning my head, and talked as we watched the stars. I asked him what he’d wish for if he had three wishes. He answered:

“For everyone to appreciate what they have, and not material objects like money or possessions, for wasps to be eradicated, and for people to look outside themselves and see the bigger picture, the things which really matter, to stop living their own secular lives and see the world around them”.

Mine were similar, except my first wish was that nowhere would ever serve watered-down Coke. Heck, that stuff’s important too.

He told me I’m beautiful. He wished on a shooting star; said the wish was about me. I told him how happy I am.