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.

 

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.

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.

So… the codeine. It’s going okay, actually. There have been a few days where I’ve taken more than the recommended dose, but that was purely through pain. So while I’m still not entirely responsible… I’m learning. I’ve learned a lot of lessons recently, and one of those is that painkillers are important. When you’re in so much pain that you could rip your own face off, the last thing you care about is abusing painkillers to escape the fear. You just want to escape the pain, and let them do the job they were designed for.

Oh, it’s not easy. I’m constantly on my guard, and I know it’s something I’m nowhere near over. Addiction is… well, it’s an addiction. It’s come back far too many times for me to ever say I’m over it.

They’re not perfect. Tramadol was much more effective, but I couldn’t be doing with the apathy and constant nausea. So I still have pain, it just becomes easier to ignore. That’s why opiates are so perfect. They don’t remove the pain, just stop you caring.

Like depression.

One day, perhaps this will stop happening. I’ll stop losing it, and life can run more smoothly.

 

 

It demands to be felt.

I spent some time last night reading through a few of my old posts. Recently, I’ve become incredibly bitter about my situation, and part of that bitterness is centered around my inability to write properly now. Writing has always been my way of dealing with things; before the painkiller addiction came a writing addiction, and up until recently it’s been all I know. Now… my brain just can’t process the words properly. I read every single comment, but the energy it takes to consider and type out a reply just isn’t there.

Tomorrow evening, my mother is taking me to see my GP.  I asked her to come with me after last week’s disastrous appointment, so I have a buffer against the almost-inevitable meltdown. The point has come where I’m too distressed by the pain in my foot and ankle (a hot, burning, stabbing, pulling feeling, demanding my attention 24/7) to keep my emotions in check, and honestly, I don’t think I care anymore. I’ve become so used to crying in public – something which used to mortify me – that I’m almost blasé about it now.

 

Over recent months, my health has gone very downhill. I’ve become almost totally unable to walk unaided, and only leave the flat once a week or so. After a short walk (sometimes only ten minutes), I’m left in crippling agony for days on end. I’ve had to stop taking the tramadol because it made me feel so sick, and although I’ve managed to find a small number of prescription-strength co-codamol which we discovered in the bedroom when we moved in, the relief only lasts an hour or so before surging back into my heel, ankle, calf and toes. It’s something I can’t describe; imagine the worst pain you’ve ever been in, then magnify it by ten. Every single step is like climbing a mountain. I have to brace myself each time my foot touches the floor.

My mother says I have to go through this; I have to be bitter and angry and resentful, so I fight back. I admit, I have started to consider the possibility of this pain not being forever (for months, I’ve believed that this will be my life until I die), even if it’s unlikely. After all, everything I’ve read and the words of both an orthopedic surgeon and a rheumatologist back that belief up. Still, there’s a chance. I want to believe in that chance, so much.

Two years is a long, long time to be in constant, burning pain, and my mother says she will speak for me at tomorrow’s appointment. I don’t think I can make sense of this anymore, and everything I say comes out wrong. A while ago, I wrote about how I have difficulty admitting weakness to those in authority. Ever since, I’ve tried to remedy that but the problem is too deeply ingrained to fix overnight, or even in six months. So I need an advocate. My mother and may have had many, many conflicts and we may have a tainted history, but she knows me better than anyone else, and she’s seen me falling apart over the recent weeks and months of increasing pain.

She was supposed to visit today, but I sent her a text saying it wasn’t worth it because I’d been up all night. I did get to bed at a reasonable time after hours and hours alternating ice water and heat on my leg, but woke at 2am. S was awake, and asking if I was alright. The pain screamed through the back of my ankle and heel, and apparently I’d been crying out in my sleep. Clearly, I wasn’t going to get back to sleep so I kissed S, waved off his offers of doing something to help (really, nothing can help) and told him to go back to sleep. I set up camp on the sofa with a cup of tea and a joint, raising my leg as high as possible with a construction of pillows, cushions and my old duvet. I’ve become incredibly attached to that duvet, as I always do when I’m struggling.

I watched iPlayer all night, spacing out doses of co-codamol to avoid taking too much. I’ve learned too many hard lessons regarding that. It’s difficult, being in the living room while S is asleep in bed. I miss him terribly. We’ve always slept very closely, waking up most mornings wrapped around each other in all sorts of bizzare contortions, so to be alone on the cold sofa is pretty depressing. It’s happening more and more often now, usually because I can’t make it to the bedroom. It’s only a short distance through the hallway and there are no stairs, but it’s incredibly difficult trying pull myself along the walls and balance on one (also painful) foot to avoid making the pain worse. So I bed down on the sofa, hoping S won’t see it as a slight. I’ve explained the reasons to him, but I know I’d be devastated if S didn’t seem to want to sleep with me. I just pray he’ll never take it personally, because I need him right now, more than ever.

The pain has lessened for now. I took a painkiller an hour ago, and I’ve been smoking dope all night to try and calm the pulling feeling in my calf. It works, but it takes a lot. I can’t help thinking that I shouldn’t have to spend money on illegal drugs when there’s a health service out there… but what else can I do? I no longer enjoy being stoned. I don’t like the tightness in my chest from smoking so much, or the effects on my memory. Without it though, I’d end up cutting my own leg off.

I told my mother that I wouldn’t be upset if I somehow lost my leg in an accident. How awful is that? I hate myself for thinking that way; it’s so unlike me, and it’s a horrible thing to think of. I just… I’ve never hated a limb before. I’ve grown to utterly loathe it. I don’t recognise my own foot anymore. I can’t really identify it as mine anymore. It’s just a painful, hateful alien creature. A punishment, although I don’t quite know for what.

Everywhere I look, people are dealing with pain in rational, sensible ways. Then there’s me. Why am I taking it all so badly?

 

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.

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.

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.

.

 

Related articles

• What Does Depression Feel Like? Real Experience (therealsupermumblog.com)
• Back From The Bin (manicmuses.wordpress.com)
• Depression Isn’t Selfish (thoughtcatalog.com)
• Depression: Living with the enemy (vancouversun.com)
• I have depression, depression does not have me. (thenlifewentbam.wordpress.com)

 

There and back again

During my brief* flirtation with cognitive  behavioural therapy, I found my first stumbling block to be the advice I was given to follow when I’m having a panic attack:

“Remember, it won’t kill you“.

Really? Because that’s not how I felt last night.

Images.com/CORBIS

Of course, it all worked out fine. It always does. This is the frustration; I know nothing terrible is likely to happen, but still I obsess and panic until I can’t see straight. Throughout my life this has happened hundreds if not thousands of times, and while bad stuff undoubtedly does happen… has the world ended yet? No.

I’m sick of not being able to make sense of myself.

Talking of sick, the Tramadol made me vomit. Penance, I guess.

 

*one session. I’m amazed I lasted that long.

 

So why don’t you slide

Earlier, S asked if I fancied a takeaway – curry from our favourite restaurant – and I agreed. Later he went out with a friend to buy some tools. They’re working on the basement beneath our flat, as technically that’s included in the rent. It’s currently filled with the last owner’s belongings; stacks and stacks of paintings, canvas, frames, lamps, chairs, books… Bob was a hoarder, and a painter. His work’s pretty good actually. Now he’s dead and his wife is in a nursing home (she went downhill very rapidly when he died), somebody has to clear it all. The basement is pretty big, taking up most of the floor space of the house, so it’s a mammoth task.

Anyway, while they were out I got a call from S. He asked me if I wanted to go to the restaurant with his mates instead of getting a takeaway.

Did I do the right thing when I said, “it’s okay, I’m not up to it. You can go along anyway”?

I wasn’t lying. I’m truly not up to it. I tried going for a short walk earlier, and by the time I returned, I was struggling to breathe and sweating like crazy. It’s been so long since I’ve had ‘proper’ exercise. That walk used to take me five minutes. Today, it took thirty.

Straight away S’s tone changed; the first time I’ve ever really heard it do so. He said, “oh. Okay. But we were going to have a takeaway.”

I shrugged him off, “it’s fine, I’m really, really not up to it. We can do it another time”.

He agreed, but… he didn’t sound happy. It’s only when I ended the call that I began to feel that familiar twinge of panic.

Oh god. Oh god oh god oh god you fucking idiot oh god oh god.

I have never once done something (to my knowledge, anyway) to make S angry or disappointed. Unlike my relationship with O, I’ve managed to keep my irrational emotions in check; at least until I’m alone. I’m so determined not to fuck this up. I know it’s classic BPD to say, “oh, I love him so much, he’s my everything, I want to be with him forever” but all that’s got me in the past is a string of disastrous relationships and far too much bitterness. I almost have my head around that now, and the medication certainly helps me keep the more extreme aspects of my behavior in check. So while I know that these feeling might be BPD tricking me and that mental illness has a habit of making me cling to somebody like fuck… I want to believe this is real. I’m pretty sure I know, deep down, I love S with all my heart; how could I not? He’s the only man who has never condescended me. Who has never given me reason to suspect him of wrongdoing. The only man who I’ve felt comfortable enough with to let the mask slip.

I know I love him.

And now I’m scared.

So what did I do? I went straight for the Tramadol.

I’m now sitting at the kitchen table, trying and failing to calm myself with a joint. The urge to crawl into bed and hide under the duvet is overwhelming.

 

There is a light that never goes out

When I lived with my mother, there were often times when the only source of entertainment was to write. There are only so many cheap horror films someone can watch before they all drift into one, and only so many charity shop books you can buy before realising you’ve read pretty much every regularly-donated text. Back then, my days were entirely upside-down; sleep during the day, and lie in bed at night, typing away. It’s because of this – the ease of settling down to write in the past because the nights were impossibly long – that I’m now finding it difficult to balance my everyday life and the virtual world of my blog.

On the whole, my life isn’t much busier. Since moving in with S, I haven’t taken up any time consuming hobbies, and days rarely get so exciting that I fall into bed, exhausted. In fact much is the same; just with added domestic duties and a slightly better sense of night and day. I just find it difficult to juggle both living in a “normal” situation, and writing.

problogger.net

Now, after months of half-hearted posts and putting off the important stuff, I’m stuck in a situation where I have so much to write about that it has become an impossible task. I bypassed the guilt long ago – I’ve been looking after myself a little, for once – but now… I’ve somehow got to squash it all into one post because putting it off is only making the problem worse, and I know that in the long run writing about all this is good for me.

Not only that, but I somehow have to try and make some sense, which isn’t the easiest of tasks on 200mg of Tramadol. I appreciate this post may be a little… disjointed. Trust me, it’s nothing compared to how my mind currently feels.

When I posted the Letter To My Consultant a few days ago,  I had actually already seen him the Monday before. My mother and I travelled 25 miles by taxi to meet with the specialist who had agreed to give me a second opinion. I had expected to fight to to be taken seriously – again – but I can honestly say that he was never anything less than courteous, and I left the appointment feeling buoyed up by the simple fact of just being listened to. It’s all I needed. Someone to sit, listen, and offer advice. Once, I thought that the NHS was built around trying to help patients, but over the past few years my faith in it had slipped to the point where I didn’t even see a reason to have an NHS if they can’t achieve the most simple tasks.

Now, some faith has been restored. And all it took was for somebody to shut up for five minutes and actually listen to me.

It should never have been this hard.

I don’t yet have a diagnosis, but that no longer matters to me so much. The promise to try and control the pain is enough for now, and although Tramadol probably isn’t the smartest option for someone who fought addiction for so many years, it’s one which works, and while I’ve certainly been craving the pills, I haven’t abused them, nor do I have the real urge to. They’re important, you see. The only thing I needed to truly escape from was the physical pain, and Tramadol goes some way towards making it more bearable.

Also, S isn’t stupid. He knows of my addictions, and he knows it’s something which haunts me every day. In the past, nobody’s truly tried to take control over it, but S simply isn’t the sort of man who would let me abuse painkillers. Now we live together, it’s something I can’t really hide – the tiny pinprick pupils and staring into space are a dead giveaway – and although I know I’ll always struggle with the urge, I suspect S will never go easy on me if he finds I’ve been abusing them. I wouldn’t want him to go easy.

The consultant said that if Tramadol doesn’t work, the next step is morphine patches. Again, he listened.

So I don’t have a diagnosis, but there are a couple of conditions which are being bandied around. Rheumatoid arthritis. Psioratic arthritis. Psioratic seems more likely, based on where the pain in my fingers is and the nail loss I’ve been experiencing. Rather than just saying “well, it’s something, but we don’t know what” – which is what I’ve been hearing for years now – my consultant explained that while they may never be able to fully diagnose me because rheumatic conditions can be so complicated, they will “do their best“. In this case, that means an MRI scan, ultrasounds on my hands and feet, referral to a pain clinic, and my first full examination since I started on the journey to find out what the hell is wrong with my body. I have begged for these tests so often in the past that I assumed I would have to do the same at this appointment, but I didn’t even have to ask. For the first time, I’m being physically tested. My first set of bloods have been done. They even did a urine sample, which my local hospital has never bothered with.

 

I came away from the appointment knowing a few things; that whatever it is will “most likely be lifelong”, that I will “probably always need pain relief”, and that there are doctors out there who still do their jobs properly.

I’m okay with it being lifelong. I feel like I’ve lived a lifetime of it already, so a few more decades can’t be much harder.

Maybe now I can settle. Enjoy living here. I’ve lived with S for six months, and so much has been ruined by my health. Maybe now… I can feel okay.

Related articles

• Trying to Lower Pain Level (chronicpainandetc.wordpress.com)
• Seven million ‘take painkillers so they can work’ (telegraph.co.uk)
• Research Explores Links Between Physical and Emotional Pain Relief (psychologicalscience.org)
• Write Through Your Pain (stranglingmymuse.wordpress.com)
• Chronic Pain Management (miralahealth.com)
• Patients ‘do not trust NHS out of hours service’ (thetimes.co.uk)
• NHS is ‘not ready’ for changes, say senior staff (guardian.co.uk)