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.

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.

 

Rude Awakening

Another day, another suggestion that I see my GP.

“I think you’re taking the wrong medication, the Daily Mail says Lyrica is used for anxiety but you’re on beta-blockers and Cipralex so you don’t need it all”. 

I curse the bloody Daily Mail.

Yet again, I slept badly last night. I’d napped during the day – an unsatisfying, food-avoiding fibro nap – and ended up awake until dawn. Dozed off sometime in the morning and was woken by my mother insisting I get out of bed and make an effort. Shouting about medication and having to see my doctor. I’m sick of hearing this at least once a week. Of course, I reacted; half-asleep and irritated, I burst into tears. I just wanted some peace. I wanted to wake up naturally on my own, rather than having my sleep cycle decided for me.

I used to try to avoid getting angry, but I’m tired of it now. Yes, I sleep at odd times but I’m not the only one, and is it any surprise?

Moving out can’t come too soon, but even that comes with its own hurdles. For weeks now, my mother has been trying to get me to pack my stuff away. Telling me to measure furniture and asking about curtains and toasters. Although I’m determined not to let her take over this move, I know she’s trying her best to involve herself with every aspect of it and I really don’t want her to. This is my final attempt at freedom; the first time I’ve actually moved out with a purpose. It’s mine and S’s flat, not hers… and I’m not sure how much I can humour her without blowing up in her face.

Don’t get me wrong. I know she’s trying to help. After all, she’s worried about me. Of course she is. I’m moving into a flat where I’ll have to take control of my own prescriptions and moods; but she seems to forget that S will be there too. And with the freedom living away from my mother affords, I know I’ll be happier. I know I’ll be able to move on somewhat, and hopefully work towards maybe getting to the point where I can work from home in the future and get off benefits. Living here… she’d never allow that. She’s too protective.

I’m not saying I’ll magically get better once I move away. I know there’s a lot of hard work to be done; specialists to see, tests to have, and a lot of the past needs to be dealt with before I can even begin to push on in life. I may never improve physically. I may get worse. But there’s a tiny, tiny chance that being allowed my own freedom and personality could relieve some of the stress on my shoulders and, in time, allow me to think of the future.

Yet again, I’ve wasted an entire day. After being so rudely woken I simmered in my own frustrations for hours, only venturing downstairs once to make a coffee. I avoided my mother. Didn’t offer to make a cup of tea for her. Usually I relent and accept things are never going to change, but why should I? I’m so close to that freedom – close enough to almost touch it – and here she is, still insisting I see my doctor every time I sleep in. Still combing the Daily Mail for health articles to thrust in my face as I’m trying to wake up. Still telling me to measure the walls of the new flat and fit furniture in accordingly.

Is it really the end of the world if I don’t put my desk where she wants it?

I’m tired, but doubt sleep will come easily tonight. I simply can’t cope with being woken suddenly. It throws my whole day off. I’m trying not to feel anxious, but having that bloody one-sided conversation about my fucking GP at least once a week is driving me up the wall. I’ve made no secret that I’m struggling right now; to add to the anxiety and panic attacks, I’m falling down the ED rabbit hole again. It’s so easy to do. It’s control, you see. If I control what I eat, things can’t get on top of me. Knowing I’ve hardly eaten for days is a comfort; I may not be able to deal with the stresses of every day life without freaking out, but I can restrict calories like a champion.

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.

When the past gives me no comfort

Despite my attempts at being entirely honest and bare in this blog, I do hold back. I assume everybody does, to some extent, even in their most secret of diaries. You see, twenty seven years of life is a lot to fit into just over a year’s worth of writing.

At first, I thought running out of things to say and confessions to admit would happen quite quickly. After all, I haven’t lived for that long; most still seem to consider me a child, barely out of my teens. It seems that even after you grow up and become an adult, there will always be somebody older ready to condescend your problems by mentioning how much more experienced they are. However, thousands of words later, I’m beginning to realise I can’t possibly tell my story in such a short time and, if anything, I’m only just admitting to the tip of the iceberg.

Something I’ve learned about writing such a personal blog – which involves sensitive subjects – is that I have to be feeling in the right frame of mind to speak about certain things. Sometimes I have to be angry; I write best about self-harm when I’m furious. Others, I have to be bordering on falling back into the depression pit. Some things… I am never in the right frame of mind.

 

Like tonight. I would much rather curl up in a ball on my bed and smoke dope and watch E.R until the sun comes up, than write about all the anxiety which has been plaguing me. I’d much prefer distracting myself with pointless games than admitting to finding it really fucking hard not starving myself every time I try to lose just a little weight.  And I’m forcing myself to write because I know that if I don’t, I’ll keep doing it. If I don’t have to hold myself accountable, then what’s the harm in letting myself cut a few hundred calories a day, until I’m only eating half an apple and two carrot sticks? At least then less people would judge me. I wouldn’t have to worry about not being taken seriously anymore, because when I was thin… I felt better. I just felt better. More confident. People listened to me more. I wasn’t just a fat loser with a walking stick and too many piercings.

I’m tired, but I don’t want to sleep. I also don’t want to talk about the voices.

They’re not voices; not really. They’re more like obtrusive thoughts which feel like they come from a different brain. They barge in with suggestions and hints, and are impossible to shut up once they get going. Until a few years ago I believed they were entirely valid thoughts, and acted on them. After years of fucking up and putting myself in dangerous situations… I learned – through lots of self-therapy and even more medication – that they’re not my real thoughts. That’s all well and good, but it doesn’t mean I can ignore them. They shout. Loudly. Demand my attention. Grab onto my brain stem and refuse to let go.

I wish I could explain the things they say, but it’s difficult to put into words. It’s bitter and spiteful stuff; reminders of my failings and every single time I said something wrong. They’re the ones who say that everybody in a room is looking at me, and that everybody I know is just pretending to like me out of pity. When I’m holding the lit cigarette in my hand and feeling helpless, they’re the ones who are shouting at me to press it into my arm. They’re the ones who twisted everything; who convinced me that I had enemies in friends and that others were out to hurt me. They made it all sound so real, and they still do. I just know they’re not a part of me now. Not a healthy part anyway.

I don’t know what I’m trying to say here. That I’m tired and need sleep, probably.

“We can’t let her think we’re unintelligent, T”

My mother is still stressing out over the benefits situation. This morning found her surrounded by bank statements again; double, triple and quadruple checking dates just in case she’s made a mistake somewhere. The living room floor has become a holding pen for pieces of paper, pens and cups of cold tea as she tries to ensure every last little bit of money in her account can be explained. Pension credit. Money my father occasionally paid into her bank for work on the house. Gifts. Every last penny is being accounted for, and it’s driving me crazy.

I don’t know if she’d ever understand this, but they’re investigating me, not her. I’m doing my best to ignore all that’s happened and let it wash over me, but the constant stress of my mother’s obsessive perfectionism is ruining my attempts at coping. I want to slap the bank statements out of her hand and shout at her; tell her it’s my life on the line, not hers, and if I can try to deal with it then she should too. I know that’s a selfish attitude to have, but I wish I could make her see that she’s just winding herself up. The fraud officer… she doesn’t need all this information. I wish I could explain that, but my mother doesn’t hear me when she’s determined to prove some sort of private point to herself.

I had to type out a couple of cover letters earlier, to put in with the collected statements. My mother’s wittering and stressing and tutting… I made so many mistakes, and each time my mother pointed the errors out and said, “we can’t let her think we’re like the others who get accused. We’re intelligent”.

She reads the Daily Mail.

I haven’t felt able to think rationally all day. It’s 1am now, and I’ve been trying to write this post since early this afternoon, with little success. Every time I sit down to type, I get distracted. I get like this sometimes; I go from laid-back and lazy to almost-ADHD within a second, unable to stop my brain running away with itself. Today was one of those days, with a hefty dose of panic thrown in.

All day I’ve been on the edge of tears for no damn reason. I hate it when I get like this. I can remember standing at my teacher’s desk in primary school, being told off for something stupid, and bursting into tears. I felt so ashamed; no other kid reacted like that. I still do it whenever I feel threatened or backed into some sort of corner.

Before we even got to town, I was panicking and snapping at my mother. I didn’t mean to; I just had no control over my emotions. Again, I hate it when this happens… everything in my life is about control and knowing exactly where I am emotionally, and when I freak out it feels like I’m going to die. All the protection I build around myself gets stripped away by anxiety and I feel utterly exposed. Like the whole world knows I’m a big, fat failure.

It’s now 3am. I tried to sleep, but my bedroom is too warm and my mattress is at an odd angle since my mother flipped it over at the weekend. I keep thinking back to today/yesterday, and realising just how much anxiety still rules my life. It’s not just a one-off either; I freaked out at the weekend too, while S and I were in Liverpool. I was frustrated that everything was hurting, and walking was near-on impossible. I couldn’t keep pace with S and even though he tried to slow down for me, I still felt angry that I couldn’t walk normally. That I had to keep stopping and sitting down to give my hips and legs a rest. I felt like I was letting S down; he’d gone to the effort of taking me for a day out, yet I bitched and griped my way around the city.

I tried eating at the restaurant he took me to – a bistro we’d visited before – but even the Greek pizza tasted like disappointment. On the train home, I sat next to S while he chatted to an old man sitting opposite, feeling utterly miserable. I know I shouldn’t let the pain get to me, but sometimes it’s hard not to wish I could just be normal. Just for one day.

We got back to his landlord’s house and sat in the garden for a while, smoking and drinking coffee. We chatted a little, and I made a few jokes about my inability to cope. S seemed unusually introspective, and something inside me decided to take the BPD view on things. I asked if he was okay. S said yes. I asked again. I worried. I thought perhaps I’d ruined the whole day by being me. I said he looked sad; he said he was just tired. It took all my strength not to ask again, to avoid grabbing onto his arm and begging him not to leave me.

It’s now half past two in the afternoon. Managed to sleep, eventually, after going downstairs and stuffing myself with mango jelly. I’m quite proud of myself; I wanted chocolate cake, but forced myself to go for the low calorie option instead. For now, the binge cycle is somewhat under control.

Yesterday ended up being a total disaster. I was angry and defensive to begin with, and my mother commented on my paranoia; something I hate being brought up. I know I’m paranoid. I don’t need to be told. I tried to keep it together as we walked around town, but everyone seemed to be staring at me and getting in my way on purpose, and half way around the shops I realised I hadn’t taken my medication – which only caused me to panic more. Life without the cipralex and beta-blockers is unbearable, and it amazes me how quicky I can go from coping quite well, to a nervous wreck within hours of missing a dose. Especially without the beta-blockers; they slow my heart down and stop me going into the fight or flight response because of entirely ridiculous things.

I complained. Bitched. Moaned. I felt bad, but I couldn’t help it. My brain said one thing and my mouth said another. The pain in my ankle was frustrating me and every tiny little noise set me off. Our main shopping street isn’t particularly big, so it gets very crowded. Even though it was pouring with rain, the crowds were enough to make me feel entirely insecure and vulnerable, and my mother kept telling me off for being irrational, which didn’t help at all.

I’m sorry for this post. I know it’s mixed up and confused. I don’t even know what I was trying to say.

Sorting out statements and spending money

I’ve hardly slept for three days. The stress of the accusation, along with the horrible muggy weather, has left me unable to switch my mind off and relax. I’ve been sitting on top of my bed in my underwear, waiting for the sun to rise so I can go downstairs and make coffee, then falling asleep for a few hours in the morning. I’ve been trying so hard not to let everything get to me, but there’s always a little part of my brain whirring away, trying to make sense of it all.

I’ve wondered if whoever reported me reads my blog. After all, any number of people from a local forum could have the link now. In the past, I’ve been very outspoken when it comes to prejudice towards the disabled claiming benefits – many arguments have started because I’ve refused to let a judgemental idiot make innocent people feel small – and once, somebody posted that the DWP were watching what I wrote, and to be careful. Another member said that I was living off the state and taking the piss. It’s safe to say that the general tone of the forum was of bigotry and bitchiness (it’s the general tone of the town I live in, really) and so there’s a high chance that somebody from there is the one who reported me.

This is where I come unstuck. I don’t know these people from Adam; okay, I met S on the forum and I do have friends who I met on there, but mostly the members were just faceless strangers who had no connection to me other than geography. They only knew what I chose to tell them. They didn’t know me.

I know I can be forceful when I feel wronged. I’ve freaked out when somebody’s backed me into a corner and made some pretty unhinged posts in the past on there. But… I’m nobody to them. Why would they want to try and ruin my life just for kicks?

My mother and I went into the bank today to sort out the statements the fraud officer needs. I almost freaked out; my mother tried to explain to me what I had to say (I’m awful in these situations) and I couldn’t remember what she told me, and I was already panicking slightly over the weather’s ridiculous control over my naturally frizzy hair, so I almost lost it. I don’t know how she brought me back from it, but somehow I managed to explain – haltingly – that I’d been accused of benefit fraud and needed proof of my innocence. The assistant was amazing; he sorted out all my statements and sent off for the ones from my mother’s account, and also helped me send off for another bank card after my mother took mine for ‘safe keeping’.

Relief. Days of stress fell away, because I now know we’ve done all we can until the fraud officer receives the statements. Even my mother – who’s been freaking out constantly since last week – calmed down and we spent the rest of the afternoon spending too much money and, for once, not arguing. It’s her birthday, and I haven’t been able to get her a present so I offered to pay for something she wanted from town. She faffed and umm’d and ahh’d, and I didn’t end up getting her anything. I feel bad, because I never get her presents on time. Still she seemed pleased with the card I got her.

The relief of finally feeling everything may work out okay pushed me into a spending spree. I hadn’t planned on spending much money today but ended up spending nearly £100 on clothes, make-up and presents for S; he’s thirty in a couple of weeks and I think he deserve spoiling this year after helping me through so much.

Z is going to bleach and dye the orange bits in my hair tomorrow, using Directions in Cerise, and I’m going to henna her hair. I’m glad we’re spending time together again. Afterwards I’m meeting S at the pub and we’re going to get the train to Liverpool on Saturday to visit the Tate. He’s taking me for a meal afterwards.

Maybe things are going to be okay.