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.

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.

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?

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)

“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.

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.

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)

Current medications:
Propranalol Hydrochloride (80mg daily) – for anxiety and panic attacks
Lansoprazole (30mg daily)
Etoricoxib (60mg daily) – for inflammation
Pregabalin (300mg daily) – for fibromyalgia
Duloxetine (90mg daily) for pain, depression and anxiety.
Dianette – contraception and treating polycystic ovary syndrome

Recent medications:
Cipralex – for depression and anxiety
Celebrex – for pain
Omeprazole
Prednisone (12 week course to treat chronic eczema)

Past surgeries:
Four wisdom teeth removed
Laparoscopy (to investigate painful periods and bleeding) (2007). Laser ablation done at the same time to treat inflammation in cervix.
Cholecystectomy (2008)

Current diagnoses:
Synovitis in left ankle and inflammation of tendon at side of foot (originally misdiagnosed as achilles tendonitis 18 months ago), diagnosed approx. 6 months ago.
Pompholyx eczema/dyshidrotic dermatitis (diagnosed in 2012)
Polycystic ovary syndrome (diagnosed in 2001)
Fibromyalgia (diagnosed in 2006)
Irritable bowel syndrome (diagnosed in 2002-ish, originally treated with Mebeverine but currently under no treatment due to side-effects)
Depression and anxiety (first diagnosed at the age of thirteen) and Borderline Personality Disorder.

Current symptoms:
Pain and stiffness in fingers, knees, upper neck/base of skull, hips, feet/toes, lower back and wrists. Fingers, knees and toes most affected, although neck is becoming much worse. Pain and stiffness much worse in morning/after sitting still, and takes at least 2-3 hours after waking to begin loosening. Gentle movements seem to help the pain in most joints.
Unable to bear weight on heels for 2-3 hours after inactivity.
Swelling in fingers, toes, ankles and knees after waking/inactivity, especially in joints closest to nails in fingers and toes.
Clumsiness, especially in morning. Unable to grip items with confidence, especially pens and cups.
Fingers and toes have become misshapen over the past 18 months.
Weight loss. This is a particular concern for me as I haven’t dieted, although my appetite has decreased dramatically, again over the past 18 months. Since September 2012 I have lost almost three stones in weight, which is very unlike me as I have always struggled with keeping my weight down and I love food.
Recurring cold sores.
Itchy eyes and very dry mouth, which seems unconnected to medications.
Lack of temperature control. I have suffered from this for a number of years, but only at night. Recently it has become an issue throughout the day also, leaving me either far too cold, or far too warm. Fingers and toes always feel painfully cold regardless of weather or environment.
IBS has become much worse in the past 18 months, with constant diarrhea, cramps and loss of bowel control.

I have been referred to orthopedics, physiotherapy, rheumatology at SDGH, and to the local mental health team all regarding my symptoms. Because the pain and swelling in my left ankle was misdiagnosed as achilles tendonitis, they have only concentrated on that area of my body, and not taken the whole range of symptoms into account, which I feel are connected somehow as all my symptoms either appeared or became worse around the same time.
Emotionally, this has had a huge impact on me, and my life. I am no longer able to live independently as I need somebody around to ensure I have help with basic tasks (like cooking, taking a shower, and walking), as co-ordination and balance are something I struggle with a lot now. I am no longer able to go outside on my own in case I fall or am unable to bear weight on my heels. As a result I am now almost entirely housebound and even though I have bought a walking stick (after physiotherapy claimed I didn’t need help with walking), this only causes pain in my hips and neck as I try to balance with it.
I feel that if I could at least have a name for what is happening to me, I would cope a lot better, and possibly find a treatment which may help. Currently, I have lost all hope of ever leading a normal life, of being able to work. My hobbies all involve movement (walking, sewing, knitting, photography) and I am no longer able to do these things, and the rapidly increasing pain in my joints leave me unable to do the most basic tasks such as hold a pencil (I am also a writer) or comfortably type on a keyboard without wrist pain.

Related articles

• Follow up consultation (pmrandme.wordpress.com)
• The Disconnects Between Diagnosis and Disability (diclaim.com)
• Being Patient and Being a Patient! (brainlesionandme.wordpress.com)

Related articles

• Coping with chronic pain (blogpackinglight.wordpress.com)
• Letter to People WITHOUT Chronic Pain (cherokeebillie.wordpress.com)
• Does Chronic Illness Mess With Your Emotions? (ohmyachesandpains.info)

Where to begin? It’s past 2am, and I’m still furious from the orthopaedics appointment this morning. As usual, nothing was achieved – my consultant wasn’t even there, and I saw a junior doctor instead, who couldn’t do anything except repeat what I’d already been told at my previous appointment – and I’m furious. I’ve had enough. This officially isn’t fair, and I’ve stood back and let this happen over and over because I haven’t wanted to cause any problems.

Well, fuck that. I’ve been in constant agonising pain for over eighteen months. I can’t walk properly and need a stick most of the time. Ice? I can’t leave the flat if it’s even slightly icy, because I have no balance. I can’t sleep. I can’t exercise. It’s all I can think about, and even strong painkillers (which I’m doing my best to avoid, for obvious reasons) only take the edge off slightly. I’d gladly take back the colocystitis pain over the constant needles and cramps in my foot.

www.thechinchilla.com

I got home, and cried. Smoked a joint and ranted to myself for a while. Mentally calculated everything in the flat I could possibly hurt myself with. Considered making myself sick. Ate half an egg sandwich then threw it out. As it is, I haven’t eaten since; I’m hungry, but the gnawing feeling in my stomach is comforting. It’s… control.

I feel very out of control.

Since S came home from work, he’s been cheering me up immensely; so I’m coping okay. I haven’t taken any codeine, or hurt myself. Oh, the urge was there – I thought about it the whole taxi ride home – but you see… if I hurt myself, I hurt S too. It’s strange for me to feel that way, because in past relationships I’ve never truly accepted that my tendency to damage myself could have any effect on my boyfriend. It wasn’t that I was being selfish, it’s just… well, I had no confidence in my ability to dent another human’s life.

I don’t want to hurt S. He’s my world. I know I can’t care about myself, but I adore S. I assume that much is obvious from my past posts.

danielleflanders.blogspot.com

I’ve been thinking a lot about where I go from here, and I believe my only option is to put in a formal complaint of medical negligence. As much as I’m tired of fights… I refuse to go on being treated this way. From the first time I saw a consultant for PCOS, right through to today, I’ve had sub-standard medical treatment and every single condition I have has been made worse by lack of action and misdiagnosis. I don’t think any of this is fair, and I’ve got to stand  up for myself at some point.

The fibro flare is lifting, and I’ve been able to function pretty well today. Getting up at two pm wasn’t exactly the plan – I wanted to get up with S when he goes to work at eight am – but otherwise I achieved a few minor things. Washed up. Tidied a little. Swept the kitchen floor and emptied the bathroom bin. Had a shower, washed and dried my hair. I’m trying; as much as I find it difficult to see any real hope for the future at the moment, I am making a small effort to do the normal everyday things and occasionally interact with people other than S and my mother. Socialising has… become an issue. I’ve been wobbling with trust issues for months now, and I’m finding it incredibly difficult to allow myself to even speak to other people face-to-face. Every time I open my mouth, or type something online… I’m questioning whether I’ve said too much, given somebody ammunition. Logically, I know that mistrust is pretty unfounded, but since when did logic feature in my mind?

www.techwench.com

It’s strange. I know my fears are unfounded, yet I can’t help feeling persecuted in some way. My awareness of what’s BPD and what’s me is becoming more clear, and I can see the profound differences between my normal personality and the borderline part of who I am. Although I know these feelings are entirely caused by BPD, there’s still part of my mind which refuses to let me look at the situation rationally and comfort myself. I no longer fly into uncontrollable panics over absolutely nothing, but I know those freak-outs are just sitting under the surface, and sometimes they feel so horribly close that I can’t bear it. I’ve let them creep in lately; convincing myself that S will leave, that I’ll do or say something stupid, that I’m not pretty enough or thin enough to have such a wonderful boyfriend. That people are whispering behind my back. Hating me for reasons I can’t quite pinpoint.

I’m taking my medication, but I’m not convinced it’s working that well; although Cipralex had problems towards the end, Duloxetine just doesn’t seem to have that ability to take away all the nasty things I can’t cope with.

simplysara.me

I suppose I just feel frustrated now. I’ve come so far, and there are still hurdles. I was once naive enough to think that life would get easier one day but now I wonder if that’s just a myth; if the whole thing isn’t a lie.

I mean, I’m happy. I am. For the first time in my entire life I can say I’m genuinely happy. I just don’t like knowing the fight never seems to end.

______

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My arms hurt. My hips hurt. Everything hurts, and simply sitting down seems to require too much effort.

I’m annoyed, because I was really looking forward to finally being able to visit other blogs and take the time I used to reading and commenting, and working on my own stuff. After months of needing it as a junk room, I’ve finally been able to claim my study – the middle bedroom – and it’s a perfect writing environment. I’d planned on sitting at my desk or on the day bed and listening to music. Having a place to write without interruptions or worrying about privacy. Living with S is undoubtedly wonderful, but I find it incredibly hard to write when he’s around, probably because I was alone most of the time when I lived with my mother.

senoritaglamourista.blogspot.com

I’ve been finding it more frustrating than usual, being trapped in this body and being unable to write down all the feelings which inevitably go along with pain. I feel… angry. Angry that it ever got to this point; that nobody intervened and tried to help. All doctors seem to have done lately is made the pain worse – the cortisone injection was a complete failure, and only exacerbated the problem – and I admit that I’ve lost faith again. My life is wonderful in many ways, but everything is marred by constant agony. Sleepless nights and restless days. Seven pills, every morning, which only help a small amount.

I’m tired. None of this seems fair. I have a good thing going here, and it’s not right that some bloody medical problem has to get in the way. I have absolutely no control over it, and I hate that.

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You mean more to me
I can’t disrespect that,
I don’t think you’d care,
when you see
right through me.

I leave everything tainted,
None of it matters.

You
always meant more to me.

(c)

To slip away, to take a bow,
Admit defeat and fall from my grace
and would you miss me, would you notice;
how long would it take to forget my face?

You forgot me once, you can do it again,
after all, this is only a release
breaking free from the prison we built together
in the hope, of maybe, one night of peace.

I confess, this is serious,
and if I had the strength I would leave tonight
I wish I was brave, that I wouldn’t miss you
that this time I could really give up the fight.

An empty bottle in front of me,
and pills I know I’ll never take
just further proof of my personal failings
evidence of the depression I could never shake.

Another scar to my collection,
a canvas I paint to remind me of you
to prove this reality was never a nightmare
but a waking hell, which I’m still going through.

I confess, it would be so easy,
Just a slip of the hand, just one step too far
but I’m not brave, I feel too afraid
to let myself go, to reopen these scars.

Yet I fantasise of how easy it would be,
for you to live your life without me there
I confess I think of setting you free
sometimes it’s the only way that ever seems fair.

If I left today, would you notice?
Would you realise, I did this for you?
If I slipped away past an exit sign,
would you see it as failure, or something I needed to do?

I try to remember every word you ever said,
the times you loved me, the times you were sweet
I confess, I want to forget
to make this easier for me to leave.

But how can I go when you hold me like that;
when you whisper so quietly only I can hear?
I confess, you keep me from dying,
from collapsing under the weight of my fears.

(c)

“Suicide” is a word I don’t like typing. It’s such a final solution, and the word itself makes me feel uncomfortable about the actions I’ve taken in the past. I may occasionally mention my flirts with causing my own death, but I try not to go into much detail because, in truth, I’m ashamed.

I’m ashamed to know I even tried, mostly over such trivial things. New colleges and threats of break-ups. Arguments with my mother. They seem such petty reasons but back then I couldn’t judge whether an incident was serious or minor, and everything felt like a horrific attack on everything I am. The panic and psychosis (for there was psychosis; hallucinations and imagined conversations) drove me into a ball of fear and confusion and, somehow, I decided that suicide was the only logical answer to a world of horror. 

Last week, a man lay down on the train tracks between my house and Z’s, and killed himself. I heard the sirens and saw sketchy details appear on Facebook, but I still can’t let myself accept that somebody was in so much torment that they felt the only way to solve it was to climb over the barriers as traffic waited at the crossing, and wait for the train to hit; somebody just a couple of roads away from where I was sitting was going through something most people never – thankfully – have to experience.

I find myself wondering what he was like; why he felt he had to take that step, and do something so damn final. I wish I’d had the chance to know him, somehow.

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.

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Really, really hate them.

Since childhood, I’ve been paraded around them for various reasons; hooked up to so many machines I hear the beep in my dreams. I’ve been sick on so many hospital floors, and each and every single hospital visit – be it a planned appointment or a trip to A&E – has left me a nervous wreck.

I’m not ashamed to admit this: I just can’t cope with it. The smell. The horrible lights. The feeling of vulnerability and the worry you’ll never sleep properly again. The strange faces and unpredictable noises… and the memories of the times I’ve been really, really ill. Vomiting up black stuff all over the polished A&E floor, tripping on morphine and hooked up to every piece of machinery in the world. Happily floating on a cloud of prescribed IV opiates, not giving the slightest damn about anything but going to sleep and not waking up again.

So yes.

I really hate hospitals.

But I also hate being sick. Admitting to a phobia of vomiting sounds weak somehow; it’s hardly the worst thing to happen to a person, but it utterly terrifies me. I suspect it stems from years of bulimia; controlled vomiting is entirely different to actual sickness, and it’s the lack of control I can’t cope with. Vomiting for days on end and being unable to take my meds, wash, dress myself, eat, drink, or even sleep in the same bed as S… it all took its toll, and I ended up in A&E this morning, wired up to a drip and covered in heart monitor pads.

I admit, it wasn’t the plan.

I had an appointment with my GP this morning – to check up on my medications, which need to be raised or changed, how the pain is going… I didn’t make it, because I was busy concentrating on not vomiting in the taxi on the way to hospital.

If you’ve never been scared of being sick, you can’t imagine just how terrifying it is. Every movement, every sound, every thought even… if you feel nauseous, anything can and will set you off, and it’s utterly horrible when it happens. I’ve never vomited as an adult and not had a panic attack during. It’s not a pretty situation.

So I lay there. Sat up. Lay down again. Went to the toilet a million times. Couldn’t get comfy. The only time I’ve been on my own in A&E before is when I took an overdose – the latest in a line of them in my later teens – and my mother flat-out refused to accompany me. I resented her at the time, but I understand why now. I tried to quell the panic by browsing the internet on my phone, reading boring BBC news stories about absolutely nothing, trying to pretend everything’s okay.

Also, there was an added fear. One I haven’t mentioned to anyone, not even the doctor; I figured anything abnormal would show in the blood and heart tests. A few days ago I was in so much pain – agonising, screaming pain – that I caved, and begged everyone I know to find me some ‘proper’ painkillers. Z turned up with some 30mg co-codamol and, later, a strip of tramocet. Now, I’ve spoken about my little opiate problem before, but recently it’s been pretty dormant. I haven’t felt the need to self-medicate or block things out with tiny white pills.

However, fever doesn’t work well when you’re trying to be sensible. I accidentally took far too many painkillers; I don’t know how or why I did it, just that I took more than three times the recommended dose. It was in no way a suicide attempt, because I wasn’t truly aware of what I was doing. I just wanted the pain to stop, so I could finally get some sleep.

Then, days and nights of vomiting. Sweating; that horrible chemical-tinged sweat you get with opiates. Hallucinations and awful nightmares.

So that’s how I found myself curled up on a hard bed in A&E, trying to explain my ridiculous medical history, clutching an emesis basin and hating everything hospitals are.

I just can’t cope with them.

They scare me.

____________________

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My touch, does it mean little to you now?
I stand on the sidelines, too afraid to speak.
Always the one who stood in the background,
you’re seeing strangers, but do you ever see me?

A new world, one I can’t bear,
cast out to sea with no strength to swim,
not waving, not drowning, just watching the lighthouses,
throwing their lights on everywhere we’ve been.

Beacons, they never clear your path,
and too many obstacles for me to remove,
a tiny flame long since snuffed out,
the control of strangers with their arms around you.

I draw maps, but they just lead you astray,
who’d ever think you’d be the one who would leave?
So strong, so solid, a thing of perfection,
something of envy, at least that’s what I believed.

Lighthouses, they can’t ever bring you home,
sex destroys everything and love always lies,
strangers surround you and I crash with the waves,
you’ll never come to me first; I’ll never shine.

(c)