Saturday, 31 December 2011

I don't think I can go to the New Year's Eve party tomorrow. I don't want to start another year. I would much rather stay home and die. Really and truly die.

Why would I want to start another year? Each of the last five years has been worse than the one before. Each year has got worse and worse and worse.

I can't go and sit round a table with a bunch of people all looking forward to the next year. All full of hope and promise and anticipation. I can't look them in the eye. I just want to jump up and down on the table and scream at them. Why do they get to be happy and have lives, and I get this? I can't do it.

It was bad enough having to sit through Christmas. Which I already hate. Without having to watch New Year - which I love - get destroyed too.

But if I don't go, there's a very good chance I'll finally go through with the suicide plans. At least at the party, I wouldn't have space to think about it. And it's been filling my mind for days. And if I'm here, alone, there'll be nothing to stop me.

There's nothing to live for. I can't make it through enough therapy to get rid of the pain. And I can't live like this. The pain never stops, the meds don't work, the doctor won't give me enough of them and I would be so much better off dead

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Thursday, 29 December 2011

Somatic illness

I said I would put something up here about 'somatizing', so here it is.

I've gone into this new therapy because I'm convinced the pain is rooted in psychological trauma. More specifically, I believe it's all about feeling abandoned - now sacrificed (see this post) - by my mother.

I told the therapist this, and we talked a bit about 'somatic illness'. Somatic illness is where a physical illness is actually caused by emotional trauma. The mind can't cope with the trauma, it can't express it, so it turns on itself and attacks the body. It reduces blood flow (hence the new sling worked by increasing bloodflow to my shoulder), it constricts nerves and it makes other changes, like disrupting nerves so they send pain signals when they shouldn't.

It's very common, and the illness - all the symptoms etc - is completely real. Although it's created by the mind, there is nothing 'made up' about it. It is not 'all in the head', it's not hypochondria, the patient isn't doing it all on purpose. It's real symptoms of a real illness - it's just that rather than a pathogen or a virus causing the physiological changes, it's the brain doing it, essentially because there is something that the brain feels it can't cope with in any other way.

All of these things are happening subconsciously, and so the patient has no idea it's going on, and is equally powerless to stop it. Even when you do know it's happening, it's still not possible simply to turn it off; you have to work out and understand what it is the brain can't cope with, and resolve that underlying conflict. Only then will the illness go away - because the brain no longer needs it: it can now cope with the trauma itself.

Any stress-related illness is essentially somatic e.g. headaches, irritable bowel syndrome (IBS). Somatic illness commonly hits the digestive and genitourinary tracts, so you get ulcers, IBS, cystitis, thrush etc. Also eating disorders - when someone who's never really shown an interest in dieting, develops an eating disorder (like me 12 years ago), you'll often hear doctors say it's because they are trying to exert control over their life, and the only thing they feel able to control is their food . The point, though, is that there is something else in the patient's life or their past that they couldn't control, and the eating disorder is the brain's way of compensating for that. You may also hear of paralysis that has no physical cause and which later resolves itself (this, unhelpfully, used to be called 'hysterical paralysis', once again making it sound like something you intentionally do to yourself).

Tangentially, it's also not uncommon to hear of sexual abusers later developing testicular cancer; all the guilt from what they've done with that part of their body gets returned there, by the mind. I'm still waiting and hoping to hear that about my father, though I do know he's had quite a lot of medical problems down there, including, I think, surgery. (Yes, it's wrong to wish that on someone else, but think about what he did to me - really think about it - then tell me I'm wrong.)

In talking to the therapist, and reading the book, I realised that I have suffered somatic illnesses since I was about 14, ranging from joint pain, IBS and anorexia, to cystitis, excema and skin allergies. Although I recovered from the knee injury caused by the motorbike accident accident (it was a slow recovery, as soft tissue injuries generally are, but there was no hint of long-term fallout), by the time the car accident happened 15 months later, something had changed,

Something in my psyche had reached crisis point, and the trauma(s) that had caused 25 years of often overlapping somatic illnesses, came together in one life-altering, disability-inducing condition - chronic pain.

It all started with my shoulder. When that didn't help (i.e. it didn't achieve what my brain needed it to, in order to resolve the conflict), things got worse, with the addition of the neck pressure. My brain was not only inducing my nerves to send faulty signals, now it was constricting nerves, so that I developed neurological problems, like numbness, twitching, explosive headaches, migraines and back pain. Each deterioration since then can be seen as another attempt by my brain to resolve an unresolveable conflict.

That 'conflict' lies in my feelings about my mother abandoning me both to and for my father (again, back to that earlier post). I'm not going to go into it in any more detail, because some things really are just too personal. The difficuly, though, is that none of this is going to get any better until I have resolved those issues. And there are all sorts of other issues tied in to that, like issues of control, feeling unsafe, anger; until all of these are dealt with, I don't have a chance of the pain getting any better. My brain is doing all this in a misguided attempt to help me; it's not going to stop until it perceives that help is no longer needed. And that means that physically, things could get a lot worse, before they get better.

Which perhaps explains why today has been such a shitty day, and why popping to Tesco to get nibbles for a New Year's Eve party I'm starting to doubt I'll ever make it to, triggered hideous pain and left me stuck in bed all day. It also explains why increasingly the meds are having zero impact on the pain, even when I'm swimming in side effects; my brain is desperately hanging on to it's coping mechanism, despite my best efforts to unpick it, because it fears the world will fall apart without it.

Wednesday, 28 December 2011

Taken less morph today because of the time I got up, yet it's absolutely hammering me today. I feel completely flattened. I can't breathe, I don't have the strength to even open my eye, let alone sit up. It's bloody awful.

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Tuesday, 27 December 2011

Finally, I found myself able to listen to someone else's problems today. It didn't leave me feeling hurt or angry that the focus was being taken away from me, or that she had no right to complain because her problems were nothing compared to mine.

I was just able to listen, to sympathise and to offer what little advice I had. I could see and understand that her problems were as valid and as important as mine.

At last. I've waited so long to get to this point.

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Unexpectedly bad day.

I was woken by a text from a friend cancelling her visit to see me today. She was my only visitor for this whole Xmas period, because for some reason everyone has said they don't have time for metill the New Year.

So I was already feeling unwanted and unappreciated. When igot that text though, I lost the plot.

I was in hysterical tears for an hour. Things got even worse when I asked my sister if she was free and she said no. I'd originally intended to invite her over today, but didn't because of my friend coming round. So when she cancelled, I felt like I'd missed out in time with my sis for no good reason.

My sister kept trying to cheer me up, but I was inconsolable. All I could see was days and weeks of loneliness, and I just couldn't bear it. I was desperately fighting the urge to just go and slice open my wrists. I really and truly wanted to die. it wasn't just the loneliness though; it was the loneliness filled with the endless pain. I just don't know how to cope with this never-ending pain.

After a couple of hours, I knew I had to reply to my friend. I didn't want to make her feel worse, but I felt I had to explain why it had taken me so long to respond. So I told her how upset I'd been. I was stunned to then receive a text saying she was on her way.

Despite the fact that she was having her own meltdown, she obviously decided she couldn't leave me like that.

I was very grateful, though I felt really guilty when I saw how rough she looked. But I hadn't asked her to change her mind and it had genuinely never occurred to me that she might.

So we spent the afternoon sharing whinges; at least I felt a bit better concentrating on her problems instead of mine (which is actually a really good sign - I haven't been able to do that for months). The pain was - and still is - bad, just like the neck pressure, and I've been stuck in bed all day because I just didn't feel able to sit up.

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The pain has been quite bad this evening, especially tonight, and the pills are doing nothing to help.

It's bizarre; the pills are affecting me - I feel stoned and floaty - but it's like they're completely by-passing the pain.

If you follow the logic of 'somatic illness' through to it's logical conclusion, I guess it could be that the stress of Christmas and having to see my family is causing the pain to get worse.

More so, it could be that the stress of seeing my mum has intensified the conflicted feelings I have about her abandonment of me. My mind is making the pain worse, because this is the only way it has of expressing those conflicted feelings.

So no matter how many pills I take, they won't work. Because the real pain isn't in my shoulder, it's in my soul. And it's the pain of see her and being reminded of all the ways she let me down.

That makes sense, but it means I'm in an even more hopeless state than ever.

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Monday, 26 December 2011

24 hours of the TENS machine on my shoulder has burnt holes through my skin. I've got several bleeding sores from it, yet using it was the only thing I could do; without it I'd still be stuck on L's sofa, unable to get up.

I nearly wet myself there as it was, it took so long for me to be able to get up the stairs to the toilet. And now I have days or even weeks of broken skin, burning, itching and bleeding. All from 'the cure'.

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Sunday, 25 December 2011


I love that my friends know me so well.

One of my best friends one year gave me a DVD of a comedy show I'd never seen before, and which is now my total fave!

Another friend is developing a real knack for picking out brilliant books for me. She did it again for Christmas - she found fab books that are sooo me. So much so, in fact, that another friend got me one of them as well! Oops.

My book-buying friend also got me a calendar of antique maps. I've never mentioned I have a thing for old maps, she just figured since I love travel, I'd like maps. Spot on!

It's so nice that my friends know me that well - it makes me feel all cosy and loved. To be known so well, it makes me feel 'visible' and 'there' - the exact opposite of all those times when I feel I'm fading away before my very eyes.

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I've just made a note in next year's diary not to go to my family's for Xmas. It's too depressing, too pain-filled and just not worth the drive.

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I really thought things would feel better once the family visit was over; I thought it was just that making me feel so shit.

But on the way back from there - during the endless, pain-infested drive home - I started to feel even more crap. I just wanted to get home, get into the kitchen and start carving up my wrists.

I just feel so lonely and empty and hopeless. I was relieved my mum didn't leap up to hug me when I walked in yesterday, and gutted she just sat there. All the niceness of the day was ruined by the hideous pain episode that had me trapped on L's sofa till 1am and kept me awake all night at A's. I didn't feel able to sit and chat with her this morning but I didn't want to feel so ill and pain-ridden that I had to go back to bed. The drive home was like some kind of torture session. I really wanted L to come over while the kids are at their dad's, but instead she's off with her mate that she spends all her time with, and I'm consumed with jealousy.

It's yet another Xmas of hideous pain, feeling trapped into seeing people I don't want to see. I stopped that years ago and carved out the Xmas I wanted. But I can't have the Xmas I want because of the pain, so I'm forced into someone else's, like a pathetic add-on.

And I'm faced with starting yet another year of pain. I want to die.

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Friday, 23 December 2011

I would happily swap this Christmas for any of those where I was cramming for exams and working in the restaurant. Anything would be better than this.

I fucking HATE Christmas.

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The therapist asked me last week what happened in my life around the age of 13-14 that caused me to start somatizing (my subconscious producing very real and difficult illnesses in order to express an inexpressible trauma).

I couldn't think of anything; the sexual abuse had stopped by then, I'd changed schools, my disabled sister was already at her 'special' school with her 'special transport. There was nothing particular that happened around that time. It struck me last night though. It was my little sister's near miss.

She was about 5 and was cycling with my mum. They were coming down a steep hill leading to a very busy road, when my sister suddenly forgot how to use the brakes on her bike. She was flying down the hill towards certain death, so my mum powered past her and knocked her off. It was the only way to prevent her crashing into a bus or fast-moving car, and quite probably saved her life.

I was always stunned and amazed at my mum doing something so heroic. I was proud of her. But I was also completely confused: how could the woman who would go to those lengths for her daughter, be the same woman who was never, ever there for me? Even at that time I had already blocked out the sexual abuse, so I couldn't put the betrayal I felt into words - I didn't know what I felt so abandoned about, I just knew that I did.

And I think it was that, the 'heroic' event and the conflict it caused in me, that tipped me over the edge. I think that's what started the somatizing - I desperately needed to know she cared that much for me.

It's so weird though - all this time I've been convinced it was about the attention my middle sister got; turns out, it's my baby sister.


I'm aware I haven't put a post up here yet about the somatizing; I'll try to, but it's not easy to talk about it.

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It's taken a huge effort of will not to down every morphine pill in the house at realising this...

She didn't just abandon me, she didn't even just abandon me to him. That would have been s breeze, by comparison. No, it's not just about abandonment. It's not just about turning her back, walking away and leaving me to my fate. It's about sacrifice.

She sacrificed me. She sacrificed me to him and she sacrificed me for him.

She stood by and did nothing when she discovered his abuse of me, both times. When she found him in bed with me - which she has conveniently blocked out - she accepted his excuses, stood by and let him get away with it. Then when I outed him, 30-odd years later, she stayed with him.

But not only that. All the years of my childhood, his state of mind, his mood, his happiness, was my responsibility. If he was angry, it was because I (or we) had done something to make him that way. The admonishment 'not to annoy dad' paved my childhood.

So important was his contentment to her, that I was disposable in pursuit of it. It didn't matter that keeping him happy - or bearing the blame for failure to do so - made me unhappy. He was more important than me and she would drop me in a heartbeat if it meant favour from him.

Not only that, though. Not only was I currency redeemable against his mood. I was her buffer from him. I was the perfect substitute, the ideal proxy, to protect her from him.

He wanted someone in the garage bleeding brakes or holding welding panels. She didn't want to be out there, getting yelled at, damaging his mood, risking the tranquility of the next few days to an endless petulant sulk; perfect, send the daughter. An ideal stand-in, someone who could complete the tasks, listen to the endless narcissistic preening, with no right to complain or refuse. Keeping him away from the mother for as long as possible, and until all the unpleasantness was done. They could even bond over lamenting and bemoaning the inadequacy of the understudy's performance.


Over and over again that bitch sacrificed me to him, to make her own miserable little life more comfortable. And she's still doing it. Still acting like he's the only one that matters, and the rest of us are just here for his convenience.

Well she can go to hell. I never want to see that bitch again. I'm done.

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Thursday, 22 December 2011

Weird day today. I got no sleep - my sleeping is especially shit at the moment - so I've been tired all day.

I had to talk to Personnel this morning, and wound up getting quite upset at the thought that struck me last night; about things getting worse before they can get any better.

I cheered up a bit, but when the neck pressure once again forced me to take to my bed after lunch, with my arm in extreme and very painful traction, I just felt I couldn't bear to keep on like this; I started planning a pre-Christmas suicide.

It gradually wore off, then just now I suddenly found myself - for a very brief moment - feeling very positive and almost elated.

It lasted at most about five minutes though, and now I'm back to how I was before. Wondering how the hell I'm going to find the strength to get through months more of pain and neck pressure and no sleep. And that's without factoring in the toll the therapy is going to take. Really, I think it would be better not to even bother putting myself through it. I should just get the big knife out right now. You have no idea how much I want to.

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Wednesday, 21 December 2011

I think it's possible things could get a lot worse with this new therapy, before they get any better. And that thought terrifies me.

Already tonight I've had to take 35mg of OxyNorm, on top of the usual 20mg of OxyContin. The pain has exploded due to the extreme traction I've had to have my arm in all day, but that was the only way to ease the neck pressure. I'm still having to keep some traction, or the NP is too bad to sleep. But it's causing terrible shoulder pain, and the morphine is doing absolute nothing to help it.

I'm scared that, as my brain perceives its coping mechanism being taken apart, it will go all out to protect the ruse. Which will result in unbearable pain that the morphine is powerless over.

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Tuesday, 20 December 2011

'Unfairness reflex'

I'm having an odd reaction to the therapy; my 'unfairness reflex' - the part of me that always overreacts to any perceived injustice - has gone into overdrive.

I always get very angry and upset whenever I feel someone is treating me unfairly. I also get angry at unfairness to others, e.g. an able-bodied person using a disabled space. It doesn't affect me directly - I've already got a space, for example - but I'm annoyed in others' behalf.

At the moment though, I'm becoming utterly incensed, beside myself with rage at injustice to people completely removed from myself - on TV for example.

I was watching something on TV today where a labouring woman couldn't get an epidural because the only anaesthetist in duty was in theatre. I felt so furious on behalf of this poor woman forced to endure the pain of labour without relief simply because of the hospital's failure to provide enough staff.

I was crying with fury and I had to stop watching. Then later, I was watching something else, a comedy, where one character was taking advantage of another, and she was letting him get away with it. I was overcome with fury and had to change channels.

I've never been this bad before. It must be because the therapy is bringing things to the surface. It has me worried though; if I can get that upset at injustice on a fictional TV show, how am I going to react if someone does something 'unfair' to me?

It's especially worrying given that I have to see my mother in four days time. My mother whose abandonment and neglect of me is one of the root causes of that same 'unfairness reflex'. I'm now dreading going over there, and seeing her. Totally dreading it.

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I've managed no OxyNorm today (so far - Im expecting to take some in about an hour). That sounds better than it is, because the reason for that is that the neck pressure has been so bad that drugs have been useless - the only option has been to put my arm into extreme traction to try and get some relief.

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Monday, 19 December 2011

I'm conscious that I'm not putting as much up here at the moment as I usually do.

That doesn't mean there's nothing going on - actually, quite the contrary. There's a huge amount going on, but it's all so personal that I'm just not comfortable sharing it.

I can say that the latest therapy session went well, and it's already clear that she does know what she's on about. She came up with some very useful suggestions and interpretations that I hadn't thought of, and which have made me think, which is exactly what I need her to do.

After a week of good pain levels, as a direct result of the first therapy session, I then had a really bad week, coinciding with my latest visit to the doctor. The therapist had a different perspective on why that happened the way it did, and also set my mind at ease that it wasn't me 'making things worse' again - that I'm not consciously in control of this.

As a result, things got a bit better, but then I had an awful night last night and I feel terrible now. If it hadn't been for a visit from some friends I rarely get to see, today would probably have been horrible too.

I'm aware that I'm once again taking a lot of morphine - more than I'd like - but I feel I have no choice. A lot of the time it's not even really helping that much, yet the chance that it might, and my desperation for some relief, make me feel I have to try.

I'm worried I'll run out over Xmas, especially as the doc gave me less, because I'd asked for higher denomination pills. I know he's probably right they I'll this will mean they'll last longer, but the fear of pain with no pills to attack it, terrifies me.

And then there's my mum hassling me about seeing her at Xmas, when she's really the last person I want to spend time with, given all the stuff the therapy is bringing up about how she abandoned md as a child, and has kept on abandoning me ever since.

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Friday, 16 December 2011

I can't do this therapy stuff. It's too hard, it hurts too much to remember.

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Wednesday, 14 December 2011

I seem to be doing a lot of 'fresh start' stuff at the moment - like getting new specs, cutting my hair etc.

I'm getting a really positive feeling and I think it's coming from that, as tho a new start means things will somehow be different. Maybe they will.

I've also been getting rid of stuff that's been hanging around for ages, and replacing it with new; like I'm throwing out the past, even the recent past, and starting over. And I've got on and tried or bought things I've been ruminating on for literally years.

And I've been able to do some things that haven't been possible since the accident, notably paint fingernails, instead of having to wear ore-painted stick-on ones. It's because I've never been able to sit with my arm in a position to let the polish dry, without it getting all over me or the furniture.

Thanks to the new sling, now I can - I've just done it for the first time. I'll be back on my fuck-off heels one day, you wait and see.

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Sunday, 11 December 2011

Morphine dose

I tried reducing the number of OxyContin doses yesterday, as part of my attempts to cut back - and eventually cut out - the morphine.

I've already managed to go from double doses to single, so it seemed possible. I also had no pain after therapy yesterday, so thought maybe it was done, and I wouldn't need the pills.

Unfortunately, I did need them; the pain ramped up this afternoon, and I couldn't subdue it mentally, so I wound up having to take extra Oxynorm. My heating failing didn't help either; faffing about with the boiler, getting stressed, rushing about making phone calls etc all made the pain worse.

This is no good. The doc prefers I take the oxyc., it's more efficient (because it's slow release - more benefit per pill), and anyway, I'm running out of Oxynorm. I've just had to take even more; I took a bedtime dose at 10.30, but then I got caught up trying to design a mindmap to represent all the therapy stuff that I'm working on, and suddenly, it's 2am, the pain is worse, and I need more pills because I can't sublimate the pain when I'm trying to sleep.

So anyway, back to normal OxyContin levels tomorrow - 70mg spread over five doses, and hopefully keeping emergency Oxynorm to a minimum.

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Saturday, 10 December 2011

Things I'm going to do when I'm better

There are so many things I want to do, and that I will do when the pain stops. Here's some of them, in no particular order

Wear really high-heeled shoes
Go to Tierra del Fuego and Antarctica
Become a volunteer magistrate
Learn Sign Language
Wear all my funky clothes
Join Rock Choir
Go to a chinchilla show
Work with the campaign to legalise suicide
Go back to salsa dancing
Wear funky tights
Go kickboxing
Climb a volcano
Learn Latin
Visit the manatees in Florida
Do my embroidery
Go to a circus (no animals)
Do knitting
Go to the spa
Do WiiFit

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The first full session with the new therapist went well. I'd had no sleep the night before, but instead a series of 'lightbulb' moments that meant I had tons to discuss with her.

I'm afraid I'm not putting it all up here, because some things are just toooo personal. But the therapist was very impressed with my week's work, and things are continuing to go well today.

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Fucking incredible

The shrink rang the other day, as arranged, to see how I felt about her suggestion of three-more-appointments-then-out-on-your-arse.

I told her what I thought about it (I kept it polite). I reminded her she was the one who'd said I needed psychodynamic therapy, and I was pursuing that. At which point, she told me about an NHS service I could self-refer to.

The question is, why did she not tell me about that six months ago, when she started trying to kick me out? Stupid fucking cow.

I didn't tell her - cos she doesn't bloody well deserve to know - that I've found a very good therapist, and I'm sticking with her.

The shrink can fucking go to hell!

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I went for an eye test on Thursday, because the world's been looking pretty blurry lately.

I didn't see how my eyes could've changed so soon, and thought it was probably the meds. But it turned out they had changed, quite a lot. So new specs are on the way.

I did OK during the trip, but I found I can only keep the pain at bay mentally when there's nothing else going on. Even just walking around town took my focus away to the extent that the pain flared. So - going back to work may be a while off yet.

In the evening I went to a friend's for an informal birthday party. It was really nice, especially as it was the first time in a year I've been able to socialise.

I didn't use the sling or my stick, and I even managed to lay the table, well, most of it, before the pain forced me to stop. I had a bit of a lie down and was OK. I made it through the whole party - just - by the end I was desperate to lie down.

I didn't, and I should've, because the pain then exploded as I was going to bed, and I was in agony. I couldn't even get to bed myself, my friend had to help me.

Despite that, though, it felt like a very successful day. I'd managed much more that day than for months - the eye test trip, carrying stuff and laying the table and using both arms to give M and J a hug. I'd also been able to admit I was having a few better days, something which I find very hard to admit, because I'm always afraid people then won't be sympathetic if the pain comes back. But this time I was OK.

The pain the next day was also fairly OK, though it needed extra pills to get me through the first therapy session, again because being out and talking meant I couldn't give my whole attention to rejecting the pain.

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Wednesday, 7 December 2011

Do you have any idea how many pairs of heels I'm going to buy, after five years (as it will probably nearly be) of not being able to wear them?

Fucking shedloads!

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Still can't bloody sleep though.

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Tuesday, 6 December 2011

Guess what...

I feel the best I've felt since the accident.

I also feel the least suicidal I've felt since the accident.

I haven't had any serious pain since Friday. That's four days.

Four days in a row of feeling OK - limited shoulder pain, limited neck pressure, limited back pain. No migraines, only slight poking sensations in my eye.

I've had to lie down a fair bit the last two days, mostly because I can't keep my eyes open, and I've still been taking a lot of morphine (hence the sleepy).

That's partly due to fear of the pain, partly my body's dependence on it, meaning I get muscle cramps if I reduce it too fast, partly because the techniques I'm using to fight the pain aren't sustainable when I'm trying to go to sleep. But the morphine levels are less than previously, and they're coming down every day - the safe way to come off opiates.

The improvement in my condition isn't just spontaneous, and it's taking work and concentration to maintain it. I'm willing to put in the effort - as much as it takes - I just hope it continues to pay off.

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Sunday, 4 December 2011

You'll not believe this, but I feel good today.

Partly it's mental; I've managed to do the six-monthly spring clean of the chin cage and it's environs, all by myself. The last time I tried that was three years ago, and it resulted in evil neck pressure for weeks.

My friends have all offered to help me do this job, and I've relied on that ever since. But though they've done it, as hard as they've tried, none of them have been able to hide how much they hate the job, and how disgusting they find it.

I guess it's the same as kids; parents don't mind dealing with their children's various bodily excretions, but anyone else would find it utterly disgusting, as I did, years ago, when the 5-year-old girl I was baby sitting demanded I wipe her bottom after she'd taken a dump. I'd heard her asking her mum and dad to do it, so knew it was normal, but I found it revolting - especially when I discovered she had a seriously bad aim...

My friends, asked to scrub away months of wee, and gather up all the poos hidden behind the cage, clearly feel the same way, whereas it doesn't bother me in the slightest.

I don't blame them for not being keen on the job and I'm really grateful for their help, but this time I felt it was down to me. So I set out to do it myself.

I spread it over two days, and took lots of long breaks. And I did it! Not only that, I don't feel any worse as a result. Even the neck pressure didn't kick off, which given the twisting and turning, reaching and lifting, is a bloody miracle.

The pain did kick off some, but a combination of top-up pills and a new mental approach stemming from my conversation with the new therapist, was enough to deal with it.

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Saturday, 3 December 2011

Polar opposites

I saw the second of the prospective therapists today. It was a thoroughly unpleasant process and it left me feeling traumatised and violated.

It's bizarre. The minute she walked in the room, I disliked her. I don't know what it was, I just disliked her. And things went downhill from there.

The contrast between her and the first one couldn't have been stronger. She was so structured, disturbingly so. Yesterday's woman looked quite hippy-ish, and she took a much more relaxed approach.

Today was all 'what 3 words describe the space between you and your father', 'what phrase describes your mother'. And everything I said was met with 'can you give me an example of that', even when I'd just given her an example.

She also filled up those annoying 'therapy silences' - where they pause to give you time to think of something to add - by saying 'Mmm', 'Mmm,, 'Mmm', over and over, like she was slowly digesting what I'd said. Like it got more interesting with every passing second. It was so annoying. It was like the osteopath I saw in Liverpool who got round the problem of needing to see patients stripped down to their underwear by squinting his eyes so hard his lashes fluttered manically, like he was having af fit.

Yesterday, when I couldn't remember how old I was when the abuse started, that woman said 'how old do you feel when you think of that time'. The answer came instantly, I got tearful and we moved on.

Today, this one stopped me halfway through the session and said she was getting the facts, but no sense of 'me', and why did I think that was? But when I told her that I was very uncomfortable and was finding her questioning proscribed and confrontational; that she was phrasing for facts and getting facts, she had a go at me. She basically told me - without actually saying do - that I was a bad patient. Then she went on to accuse me of being like my father.

At one point, she even seemed to be suggesting that I'd be better off without therapy; she kept going in about if it was worth the awful unstable times when it feels like you're drowning in memories, like last night, when everything came flooding back at me just like when I tried working through the book on pain-as-childhood-trauma. Just from one appointment. But she seemed to think the healing that follows isn't worth that cost.

Or maybe it's just they she's such a shit therapist that she can't get you there.

She said she had experience working with people with chronic pain, but it didn't seem like she had any knowledge of somatic illness, or that she even recognised its existence. She'd never even heard of the book.

I think her therapy would've been very superficial. It would've been as close to the CBT-coping-strategies as a psychodynamic approach could get. She certainly shared the psychologist's inability to listen and unwillingness to accept I might have any insights to offer. Whereas the first one said I clearly had a lot of insight already, and was very keen to come at this from the somatic perspective - exactly as I am.

Today was a truly horrible experience, the absolute opposite to the day before, and I will never, ever go near that place again.

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Thursday, 1 December 2011

New therapist

Saw a potential new therapist today.

I have been forced into finding a new one, by my psychologist refusing to offer me any more than three more appointments, and admitting she would kick me to the kerb regardless of my mental state at the end of those three sessions. (We had a huge row about it that took up the entirety of my last appointment.)

The new woman seems very good. She came across as very approachable and a good listener. Vitally, she has experience working with victims of abuse, people who have repressed anger, and those suffering from somatic illness (i.e. physical illness rooted in psychological trauma). She said it's unsurprising I have so many somatic problems, given how much trauma I've experienced and which I've never been able to express to the perpetrators. She even seemed to be familiar with the book that started all this, and said it had obviously been a bad idea to try and work through those issues alone.

She seems perfect for me, and I'm quite excited at the prospect of working with her. I firmly believe it could put an end to the pain.

She got to see what happens with the pain, because it kicked off as I got up to leave, and it was 10-15 mins before I could leave. I'm not sorry it happened, though, because it gave her an idea of what I'm dealing with.

My only problems with her are that she's on the opposite side of town to me, meaning a busy drive on roads I find very frightening. And her treatment room is up a steep flight of stairs, which I struggled to get down today. But I think she's worth fighting through those obstacles.

I'm due to 'interview' another prospective therapist tomorrow; I will still go, if only to prove that today's woman is the better choice.

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Tuesday, 29 November 2011

Feeling good today.

After a string of bad days - including neck pressure forcing me to sit up all nights, a fight with the shrink about how to address my abandonment issues, very high morphine levels, hysterical tears over nothing, and a return to bed-all-day because of uncontrollable pain - it feels about time.

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Tuesday, 22 November 2011

Sat up in the lounge till 10pm today - the first time in 9 months.

That's obviously a good thing and a pretty big deal, but it does suggest a somewhat better day than it's actually felt.

Yesterday was appalling - the neck pressure was hideous, and nothing was working. It had been building to that for days.

Today I decided not to use the sling because I've been using it every day, but the past few days, the neck pressure has got very bad later in the day, and I wondered if it was because of the sling.

It looks like I was right, because the NP hasn't got as bad today, though it's been - and remains - very volatile. I can't sit face on or twisted to the left, I can only sit twisted to the right. Lying down isn't great either - I can't get the pillows right, which leaves my head feeling ready to explode, and the shoulder pain taking my breath away.

I did manage to get the chins out this evening, which was good because I'd been really missing it, and they were so cuddly last time. It was well worth it, I got lots of furry cuddles, plus some nibbled fingers.

I did a lot of stuff on the laptop this afternoon too, which gave a very welcome sense of achievement, and I both arm- and leg-pedalled to try and loosen things up. The doc says the more I can move through the pain, the better, but that doesn't help how much it hurts and how scared I am of what it'll do.

PS. It looks like I'm going to have to spend the night sitting up, because the NP is impossible lying down. Which means no sleep, because I just can't sleep like that. I'm dreading it.

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Sunday, 20 November 2011

Pain keeps on exploding, it takes my breath away every few minutes.

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Saturday, 19 November 2011

Raging tinnitus

I was woken up at about 3am this morning by the most bizarre thing - appalling tinnitus.

I'm serious - it sounded like a badly tuned radio in the next room. There was an undertone of sound that resembled voices, talking and laughing, too low to make out any words, coupled with a low rumbling/murmuring/buzzing.

For ages I thought I was just hearing someone's radio. I still can't be certain that wasn't the case, except for the fact that wherever I went in the flat it was exactly the same, and blocking my ears made absolutely no difference. So it had to be coming from inside my own head.

The only reason I could think of for it was that I'd taken Etoricoxib that night (the anti-inflammatory, recommended by the doctor to help the extra pain from moving more), coupled with the fact that my 'ear eczema' has been bad for days, and I forgot to ask the doctor for some ear drops to treat it. I haven't looked at the SEs to check if it's a known problem, but I was terrified that, on top of everything else, I was now going to be stuck with tinnitus for the rest of my life. I've heard of people who have it for 25 years; I just couldn't bear that.

Fortunately, it was gone this morning and it hasn't come back, despite taking the Etoricoxib this morning. I hope to god it doesn't.

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I was doing OK this morning. I desperately had to get my prescriptions from yesterday round to the pharmacy - I'm nearly out of morphine! - and I also went to Tesco for my lunchtime bagels.

The trip seems to have been my undoing though; the neck pressure got steadily worse, till I had no choice but to go to bed and put my arm into extreme traction.

Luckily that helped, and on top of that, the morphine today is knocking me flat. So I've spent the afternoon off my face, on not-that-many-pills. I daren't move though, having found the right position, so I've been lying like a statute for the past two hours.

If I wasn't so stoned, I be going stir crazy from it, but actually, I couldn't care less!

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Friday, 18 November 2011

I asked the doc whether, given the current experiment and improvements, it would be helpful to go back on the anti-inflammatory Etoricoxib.

I don't know what made me think it would help - I don't know that much about the stuff, it just seemed that it might. And he said it would, if I'm going to be trying to move it more or do any exercises.

So I'm trying it, even though in the past it's caused me stomach problems and weight gain. That's particularly worrisome, because my stomach has actually improved lately, despite the morphine, and I don't want to ruin that.

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Thumbs up from Doc

The doctor surprised me today, by being very impressed with the new sling.

I'd expected him to do his usual 'I don't like seeing you with that', like he did with my stick and the ordinary sling. But instead, he was really pleased with it, and with the experiments I've been doing trying to move my arm more, using the arm pedaller, and getting out and about more. He was really pleased to hear about me sitting up more, staying over at a friend's for the first time in nine months, and all the rest.

He said he had no doubt it was the arm pedalling that had kicked off the pain and neck pressure, but told me to keep trying. He said the more I can move through the pain, the better. He agreed I can try swimming again, and gave me some ideas for very gentle exercises.

He wasn't worried that morphine levels remain high, and he said he's still optimistic, because I'm always trying to find new avenues to get better, I'm always willing to experiment, and I just really want to get better and to work.

He's going to talk to the shrink to try and get her to give me the help I need, but in the meantime, the message is to just keep doing what I'm doing.

Of course it's not all good news - I'm still getting hideous pain and neck pressure, plus very little sleep, and I'm still very restricted. There are still lots of days where I'm stuck in bed, I'm still drugged to the eyeballs most of the time. But the sling is allowing me to sit up some of the time, and giving me some good days. Which is better than nothing.

Unfortunately, however, the doc didn't seem to think the improvements mean there's anything they can do to help me. Some of us had been thinking that if a 'mechanical' fix helps, surely that means something could be done surgically. He said the improvement is just because my arm is being held in a more natural position now, and that's allowing me to move it a bit more.

I'm disappointed, but not entirely surprised. And at least it means I don't have to go through endless tests and examinations, just to be told yet another branch of the NHS won't help me.

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Thursday, 17 November 2011

It's 2.30am. I've been taking 3 Oxynorm every 3-4 hours, and still I can't sleep; I'm cycling through pain followed by neck pressure followed by pain.

I'm in a strange bed, in a strange house, so it's not like I can even go watch TV or talk to the chins.

I just want to go to sleep, pain-free.

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Drove to my friend's house for my first visit anywhere in 9 months and already it's a disaster.

The roads were really busy, full of idiot Yummy Mummies who don't have the skill or the brains to drive the cars they're in. Trundling along, stopping for no reason, letting everyone into traffic.

I got to my friend's furious and tearful. Now I just want to shout and scream. I don't know why I'm so upset, but I could kill someone. It was the same when I got so angry with my sister on Saturday.

Everything is so hard, and stupid people and stupid things just make it harder. I don't know what to do. I just want to go home. I don't want to talk to anyone, or make jokes and it hurts! The neck pressure's so bad and all those people, they just get in the way and they think it's only that, but it's that on top of everything else. It only takes one thing to push me over the edge.

It's not fair. I knew all the driving stuff was triggering the 'not fair' reflex, but this is worse. Because nothing in my life is fair and then people do stupid stuff on top and I just can't cope. They have no idea what I'm already going through, the effort it's taken to get into that situation. And none of them has to go through what I do. I hate everyone else for not being in this situation.

The minute I walked in here I felt angry at them for their nice house and the work they're doing and all they have that I don't. And I know how stupid it is to hate people for not having my problems and I hate myself for being jealous of them. But it's not fair!

Looking at my notes on how to deal with my relationships, the point that's resonating is to recognise that this situation is 'me+whoever now', not 'mum & dad' then. I've got to take off the 'mum & dad' masks, stop projecting them onto this situation.

I guess it's because whatever I'd been through with them, it was never enough, and they'd always throw something else at me, and just expect me to cope. They'd never see that enough was enough, and stop.

But that was them, this is now.

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Tuesday, 15 November 2011

I liked this:

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Sunday, 13 November 2011

The fallout from my sister's visit yesterday has continued today.

Although I woke up with minimal neck pressure, I only managed to sit up for a couple of hours. I put the sling on, as usual, but the 'dislocate' pain quickly became too much. I took it off, but the pain didn't noticeably ease, my back was still very sore and I felt generally wiped out and exhausted. I was forced to lie down, and I've been in bed ever since. I've taken extra pills and I still can't get up; my back, in particular, is still very sore, and my shoulder is regularly stabbing at me.

It seems odd, given that I did less yesterday than on previous days, and it started off as a good day.

I think the thing is, though, that having people here, especially small ones, meant I wasn't just sitting up. I was moving around, twisting, turning, reaching, and getting up and down. Interacting with people is simply more active than just sitting up in the chair on my own. And working would be too.

So I won't be able to get back to work till I can manage that kind of activity. It also means that the visit I have planned to a friend's later this week - the first in 9 months - will take more out of me than I'd thought.

I had planned to drive home at the end of the evening, but clearly that won't be possible; I need to arrange to stay over on these sorts of trips, until I've built up some real stamina.

It's disappointing, but very useful information.

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I don't really know what to make of the past couple of days.

Yesterday wasn't good. All morning I was struggling to find a sitting position, with or without the sling, that eased the neck pressure. The only option that even partially worked was a very extreme one: turning the slung through 90 degrees and having my shoulder so 'abducted' that I was almost giving an inadvertent 'zeig heil' salute.

It was a bad day all over, and I was trying to rest and 'save myself' for today, because my sister was coming over with her kids. But when the neck pressure did finally go down a bit later in the afternoon, I couldn't resist using my arm more, as per the other day, and even did a few shoulder rolls in the shower. I was afraid I'd regret it today - last time I tried this, the next day was evil, but I just couldn't help myself.

But today's been good. I got up with it feeling pretty good - very little neck pressure, no noticeable pain. I couldn't decide whether to use the sling or not; last time I thought I didn't need it and so didn't put it on, I was in bed in agony by lunchtime. So I strapped it on, then used it or didn't, as the neck pressure seemed to require. It worked well, the neck pressure never did flare.

The big problem today has been my back -it's been pretty bad all day, possibly because of the lower-than-lately morphine levels yesterday. It got really bad after a short trip to the shops, so I've actually been in bed since about 2.30, and have needed quite a lot of pills. There's been some shoulder pain - not too much - but the neck pressure has never flared.

So I'm confused. Last time NP was OK and I did a lot, moved around a lot and used my arm a lot, the next day was terrible. Yet today was fine, despite yesterday's activity. When it took such extreme traction yesterday to get NP to go down, I thought that meant that the amount of traction required to get results would steadily increase, to the point that it was impossible to achieve, and so I'd be back at square one. But that's clearly not the case, because today I've needed little or no traction.

All of which currently suggests that my fear that my brain will find a way round my mechanical fix, so that it can continue to restrict the bloodflow and cause the pain, won't come true. I hope.

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Thursday, 10 November 2011

Last night was one of the worst I've ever had. I was forced to sit upright all night in the mother ship, because wherever and however I lay down, it immediately felt like my head was going to explode.

I tried every different configuration of pillows and ever arm traction setup that I could think of, and the neck pressure just got worse and worse.

Yet sitting up, with the sling on, was fine. So I ended up sat there, thinking about how shit I felt, all night long. I was desperate to sleep, but couldn't in that position.

I tried going back to bed about 5am and had the same problem, but eventually did manage to find a position where it eased slightly and I could drip off. Then I woke up feeling just as bad.

Bizarrely though, when I sat up with the sling, I felt fine - no pressure. I sat there all morning, feeling OK. I did various jobs and still felt OK.

It was only about 1pm that I had to stop, when the 'dislocate' pain exploded and I had to take a load of pulls and go to bed. I'm still there, and can't keep my eyes open.

The morphine is hitting me very hard today. Three hours after taking it, it's still strong enough that I'm shaking and I can't breathe or open my eyes. Yet it's wearing off enough to let the shoulder pain spike through like a sword.

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Wednesday, 9 November 2011

It's been a shit day and I feel like crap.

I got no sleep - bloody cherries were a waste of time - the neck pressure's been awful and the pain is back.

I don't know if it's a relapse. I spent hours this morning trying to find a position with the sling that would ease the neck pressure. I finally settled on the least-bad one and fastened myself into it.

An hour later I undid it, to make some lunch, and the pressure went down. But in less than an hour I was feeling so rough all over, but mostly my back, that I had to lie down for the rest of the afternoon. I felt absolutely exhausted and couldn't keep my eyes open - a sign of bad neck pressure. I got up, but an hour later everything was flaring, including the shoulder pain that's been down for days.

So now I'm back in bed. My arm is in extreme traction because it's the only thing that will reduce the pressure, but it's making my shoulder much worse. And I feel so shit mentally.

I'm scared of everything going back the way it was. My head's been full of thoughts of getting my life back, all the things I'll do. I haven't been able to stop thinking about all the things I'm going to do, all the stuff I'll start up again, all the new things I'll take up.

And now I just feel it slipping away. This is why I always try to avoid getting my hopes up. It hurts too much, and I don't think I can stand to watch it all slip away again.

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Tuesday, 8 November 2011

My friend pointed out something interesting just now. I was saying how great it is that the sling is helping, but I really hope it doesn't all just relapse.

She said yes, but even if it does, the fact that something mechanical has had such an impact suggests that there is a physical problem that can be fixed mechanically. If it does relapse, they need to start doing x-rays, MRIs and ultrasounds in order to find out what's constricting the blood, and then do something to release it.

Of course, that goes against the theory of the pain being a manifestation of emotional trauma (as per that book). If that's the case, any intervention still won't prevent a relapse, because the mind finds ways to restrict bloodflow in order to create the physical pain it needs in order to express the emotional pain. So I'd go through the intervention for nothing.

All of which means that if it does relapse, I'm still facing a conflict; I'd have to start the emotional work, whilst pushing for all the tears and inteventions. Terrific.

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I shall be trying extract of sour-cherry tonight - apparently it's a cure for insomnia. Nothing else I've ever tried has worked, from herbal remedies, to foods, to heavy-duty pharmacologies, but I'll give it a try.

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Very pleased with myself

Big news today - I managed to go into the local town for an hour and a half, and I didn't then have to go and lie down for the rest of the day!

The last time I tried going out, I only made it through 45 minutes, and afterwards I was in agony and confined to bed. Today, I probably could have lasted longer, except the things I bought were very heavy (for me), and I couldn't carry them any more.

The pain did start to flare on the way back to the car, and I did take top up pills a couple of hours after getting back, but all-in-all, it was a roaring success.

It was all using the sling, of course, and the dislocating pain hasn't flared today. I did find, though, that the neck pressure got bad this afternoon with the sling on, so I took it off and was able to sit and move normally. Normally!

I even did some 'arm pedalling' to help free up my shoulder, as well as using my left arm as the primary one while it was not in the sling, for the same reason.

And finally...
I've just made arrangements to visit a friend - the first time I've been able to go to someone else's house in eight months.

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Monday, 7 November 2011

Just walked to pharmacy - my first trip out with the new sling fully operational.

It went well - I was able to walk at a reasonable speed, no pain kick offs and no need for bed when I got back.

I'm feeling good, and increasingly positive. I'm still on a lot of morphine, but I feel like I could work like this, albeit part-time. Getting the morphine down can come later.

I've got to be careful though. I don't want to go back to work then be off sick again because it re-flared. And I don't just want to be back at work, I want my life back, my whole life. So it's going to have to be 'slowly slowly', to make sure it sticks. Build up activity levels, and make sure the pain doesn't re-flare, before I go back. Especially given that this morning was bad - I stayed in bed, on the laptop, using pillows instead of the sling. After a couple of hours I was in bad pain and terrible neck pressure. So it's not straight-forward.

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Saturday, 5 November 2011

Managed to sit up from 10 till 4.30 today - thats nearly a full working day! And before that I went out to the bank.

Sadly, at 4.30, the dislocating pain suddenly became unbearable, and I had to rip the sling off and rush to bed with morphine.

That pain had got bad a couple of hours earlier, but it went down again. I'd also started the day feeling pretty sore. It's a good performance for today though, on top of somehow managing to go to the loo like a normal person this morning, despite heavy-duty morphine lately.

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Friday, 4 November 2011


The book linking chronic pain to childhood trauma also talked a lot about bloodflow.

It said that one of the ways the body manifests the emotional trauma as physical is by reducing blood flow, so you get physical symptoms, like pain or neck pressure.

I'm wondering if:
a) the reason the pain is so different with the sling on and my arm in traction is that bloodflow to the joint is improved? If that's the case - and I suspect it is - then maybe extended use will have the cumulative effect I was thinking about the other day.
b) the reason for all the heat and redness in my arm tonight (and I have seen it before in recent days) is because there's suddenly lots more blood floating around?

This could also be contributing to the reduction in neck pressure - maybe it's not just about the trapped nerves.

It all suggests that continuing to try it is even more important.

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If I say it loud enough and often enough, maybe that'll make it true.

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I wore the sling all afternoon and early evening. I kept getting droopy eyes until I got the positioning right.

The 'dislocated' feeling became too painful around 8 and I went to lie down. I took a couple of top ups at 9.30 because it felt like it was building up.

I notice now though that, although my left hand I'd unnaturally cold - which began with the sling on and has stayed - my upper arm is bright red and very hot to the touch. What's that all about?

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Terrible night of awful pain and no sleep.

I'm scared to sit up today. If I use the sling it might trigger pain like last night, if I don't, it might trigger the neck pressure like yesterday. I might just stay in bed.

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I'm in horrible pain and I can't sleep.

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Thursday, 3 November 2011

The 'dislocated' feeling has become agonising in the past half hour.

I took the sling off to let the chins out - one nip from them would render it useless - then put it back on half hour later. But an hour on I've had to take it off because of the excruciating stabbing pains.

Maybe once it's on, you can't take it off and put it back without lying down???

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Sling questions to consider / now answered

*is it possible that the altered angle of the shoulder joint could interrupt the pain signals sufficient to ease or even stop the pain?

*is there a cumulative effect on the neck pressure - i.e. if I wear it constantly for a period, will things adjust so I can then stop without any recurrence of symptoms?

*is the reduction in pain I've seen so far permanent and cumulative, as per the neck pressure question above?

*having taken the sling off for a while, can you then not wear it again without a rest period (lying down)?

*the eye droopiness and sleepiness I get every day isn't down to the meds, it's the neck pressure - it stops with the sling on. So if the eyes start drooping, don't go to bed, adjust for neck pressure.

*whatever nerve it is that gets trapped at some point links to the trigeminal nerve (causing the screwdriver)

*abducting the arm somehow links down to nerves in my right thigh and my left hand

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Sling part 3

Interesting day, though unexpected.

I got up feeling fairly OK, after quite a difficult night. I'd had to take top up pills in the early hours, because the pain was keeping me awake. They worked though, and I got a few good hours, then woke up with minimal pain or neck pressure.

Because of that, I didn't bother putting the new sling on, or even using cushions to support my arm: it didn't seem necessary. After a couple of hours, though, I was having real trouble keeping my eyes open and I'd been fighting off screwdriver-in-the-eye for over an hour. It wasn't exactly the same as usual, but it was bad.

I ended up having to go back to bed, but the usual arm traction didn't help, and it took a long time to find a comfortable position. Then I fell asleep for a couple of hours. When I woke up, I once again didn't feel the sling was necessary, but I'd learnt my lesson, and put it on.

It was much harder this time to get the traction right - I suspect because I had left it too long before - but finally I did and over the course of the afternoon, the screwdriver has eased. As usual in the sling, my arm feels like it's partially pulled out of it's socket, but that's bearable. I find that the numbness in my right thigh is also a lot worse in the sling, and I've also been getting new numbness in my hand today. Both of these are acceptable trade-offs for the positives I'm seeing.

The last couple of days do raise a couple of questions, which I'll be addressing over the next few days:
*is it possible that the altered angle of the shoulder joint could interrupt the pain signals sufficient to ease or even stop the pain?
*is there a cumulative effect on the neck pressure - i.e. if I wear it constantly for a period, will things adjust so I can then stop without any recurrence of symptoms?
*is the reduction in pain I've seen so far permanent and cumulative, as per the neck pressure question above?

It also answers some:
*the eye droopiness and sleepiness I get every day isn't down to the meds, it's the neck pressure - it stops with the sling on.
*whatever nerve it is that gets trapped at some point links to the trigeminal nerve (causing the screwdriver)
*abducting the arm somehow links down to nerves in my right thigh and my left hand

All of this might raise the possibility of getting back to work. I know it's a long shot, but maybe. I can pray.

I feel that to maximise my chances, I should wear this new sling all the time. But I feel bad about that, guilty. I feel like it's overkill and people will view it as me going for ever-more visible and outrageous aids in order to garner sympathy.

It's stupid to feel that way when I'm home alone, and if it helps, surely that's all that matters. But I can't help feeling, for example, that the doctor will disapprove, like he did with the stick. Then again, he hasn't found anything to help, so who else can I rely on?

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Wednesday, 2 November 2011

Sling part 2

The abduction sling arrives yesterday. Initially it was a massive disappointment; int turned out to be extremely complicated to put together, a problem exacerbated by the fact that the shoulder strap is not as pictured.

There's Velcro everywhere; this makes it infinitely adjustable, which is obviously a very good thing, but it does make working with it a nightmare, because bits are constantly sticking to each other and are then hard to get off.

I spent ages trying to work out how to fit the sling, but I just couldn't. The company's website helpfully just said to fit it as per the picture (difficult, when it's not the same as the picture!). I rang them to request instructions, and was told 'it's too complicated to write instructions for'!

I was gutted. I'd spent a lot of money on this thing, and all the faffing had triggered bad neck pressure when I had been feeling OK before. I had to give up and go to bed with my arm under extreme traction.

Later, when the neck pressure had eased a bit, I tried again. I did finally manage to get the waist strap working; I wore the sling all afternoon and evening and it really helped. It did exactly what I wanted it to - it put my arm in traction much better than the cushions ever have, and it allowed me to sit up for hours longer than normal. It also changed the shoulder pain, making it more bearable. My back and neck also improved.

The ditzy receptionist at the manufacturers had promised someone would call me back yesterday morning - no-one ever did, but I was woken by the phone first thing this morning.

The woman on the other end was extremely helpful and went to great lengths to try and sort the sling out got me. Obviously it was difficult that we couldn't see what each other was doing (she was working through it as we spoke), and it was difficult and painful for me, doing it all one-handed.

In the end, it seemed that the shoulder strap simply wouldn't fit me, but impressively she immediately offered me a 50% refund, since I could only partially use the sling.

I was very happy with that, but when I tried using the sling for a quick trip to Tesco, I began questioning my decision. It was clear the shoulder strap is necessary - the damned thing kept shifting downwards, and didn't provide as much support as it did when I was sitting down.

After a couple of hours' rest and ruminating, a solution suddenly occured to me, and this time I managed to get the shoulder strap fitted. I don't know if I've done it 'right', but it works, and the whole contraption is much more stable.

Again, the neck pressure and pain have all been better, and I've managed to sit up for hours, so all in all I'm pretty pleased.

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Sunday, 30 October 2011

Abduction sling

It suddenly occured to me this afternoon that the last time I was looking at slings online, I saw one with a pad under it that pushes your arm outwards.

At the time I scrolled on by, as it was of no use whatsoever, but now that's exactly what I'm having to do all the time with cushions and pillows.

Cue another marathon internet session; I discovered that it's called an 'abduction sling', which doesn't mean someone's trying to make off with my shoulder - though trust me, they're welcome to it! - but that it puts the shoulder into a 'neutral' position, necessary after surgery or dislocation.

Most also push your arm out to the side, which is no good for me, but I did find a few that were suitable.

They're not cheap, but it'll mean I can get up and move about without losing the correct arm position, as I do at the moment. I also won't have to keep leaning or stretching out for my pillows.

It'll be much better for doctor or psych appointments - at the moment I have to use the ordinary sling and suffer through the poor arm positioning. If I can get to visit anyone, it'll save lugging several cushions with me, and if I could get into town or anything, it would make walking easier. It'll make chin playtime less painful and I think it'll even be better for driving (though it won't be done up).

So, potentially well worth the £70!

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I feel like shit today.

I did get some sleep, though very broken, but I woke up with the neck pressure still awful.

Then I watched a TV programme about a lame horse. There was nothing the vet could do and the owner decided it wasn't fair to make him suffer a life in pain, so she had him put down. And all I could think was 'why won't someone do that for me?'.

If it's not OK to make a horse suffer, why is it OK to force me to suffer? Am I so much less important than a horse, that society is happy to just leave me to a life in agony? How can that possibly be right? Moral? Civilised?

I want to die, there's nothing anyone can do to help me, so why won't they just let me? Why?

I decided to try and sublimate my pain with food. I ordered two delicious pizzas (buy one get one free). But I could only manage two slices. I wish I could lace it with arsenic.

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Saturday, 29 October 2011

Throw up

The neck pressure is appallingly bad today. Terrible nausea hits the minute I get out of position.

Usually it takes time to build up: I feel the pressure, the headache grows and I gradually start to feel sick - all in all, a good 15 minutes. Today, as soon as I stand up, sit in a chair or put too many pillows on, my head feels ready to explode and I'm about to throw up.

It's never been this bad before. I've been taking 30mg morphine every four hours and still it's the most volatile episode I've had. And on top of that, the shoulder pain is ever-present and regularly spikes enough to take my breath away.

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Friday, 28 October 2011

I'm just glad today is over. I've been dreading it for weeks, and now it's over. Thank god.

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Rehab guy

As horrid as the rehab testing was, the guy who did it was very nice.

He was very considerate and respectful. I knew I in theory had the choice to decline any test, but I wasn't really sure they meant it. He was constantly saying I could stop whenever I wanted to though, and if there was anything I didn't feel able to do, I only had to say.

He seemed to listen carefully to everything I said, and he picked up on when I was trying to keep going but really didn't feel I could - he'd ask several times if I was sure I wanted to go on. Of course I didn't really *want* to do any of it, but I knew if I didn't cooperate, they'd just say they didn't have enough information to approve my claim. So I had to do as much as I reasonably could, whilst trying to avoid making things worse (which if course it did anyway, as I always knew it would).

Given that I was having to lie in bed with a strange man beside me though, he made me feel as secure as was possible in that situation. And of course there was the female chaperone he brought with him, but she was in the next room. I had feared that might happen, and was worried about it - anything can happen with someone in the next room, let's face it, it's happened to me before, repeatedly - but I actually felt OK about it.

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Finally, some relief.

I've taken 130mg of morphine since midday, but this is the first time the pain's actually gone down. And it took 40mg all at once to do it.

I wish I'd known - I took 35 at lunchtime, then another 15 two hours later when it had very limited effect. But still that didn't do the job. Now, at last, it has.

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I was right, but that doesn't make me feel any less shit.

Yesterday's low-pain was an anomaly, and I'm now back in agony. I'd managed to see it as anomalous all the way through till this morning. When I woke up still in virtually no pain, I really did start to think (hope) maybe something had changed.

It was still bad timing, with the assessment today, but I started thinking 'never mind, if it's stopped, I can go back to work, the insurance won't matter'. I started thinking of all the things I could go back to doing.

Then the assessment started and the pain began to build. It got so bad they actually had to stop before the end because I couldn't do any more. And I've spent the rest of the day in agony, feeling even more shit than usual.

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Thursday, 27 October 2011

I'm annoyed that my shoulder chose now to do the once-in-a-blue-moon OK day.

Normally, I'd just try to enjoy it, knowing it won't last, but with the rehab testing tomorrow, I'm just worried that they'll get an unrepresentative, disproportionately positive impression of the situation.

Then they'll refuse my claim and I'll be back to the usual mind-numbing pain.

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Wednesday, 26 October 2011

Last night was even worse than the night before; I got no sleep at all. It was the pain keeping me awake this time - I didn't take as much morphine, to not have to cope with the panic attacks, but that meant the pain was awful.

I was due to talk to Personnel first thing this morning. At 4am I wrote her an email saying I needed to cancel, because I was expecting to be asleep at that time, since these nights usually result in me dropping off around 5am till 10 (as on the night before last). But then I decided not to send it, because I wasn't convinced I'd even manage to fall asleep then. And I was right - I never did drop off.

It went OK, though it was quite upsetting talking about the doc saying he still thinks I'll get better, because I simply can't see how. She wanted reassurance that I still have the desire to get back to work, so at least the getting upset served a useful purpose.

The rest of the day has been a lot of pain but less neck pressure, which is good. I managed to get round to the pharmacy to collect the rest of my prescription, which I'd hoped to do yesterday but couldn't.

It was touch and go today - the pain was very bad and I struggled with every element of the task - walking, driving, standing. But I did it.

The pain has got a lot worse this evening and now I'm just desperately hoping I can get some sleep tonight. But I'm not holding my breath.

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Tuesday, 25 October 2011


I've taken 80mg of morphine in the past 6 hours - that's what it's required to get the pain under control, and even then it's just bearable, not gone. Unfortunately, though, it's causing really bad panic attacks.

I'm stuck in a catch-22: less morphine and I won't be able to sleep for the pain, but enough morphine to ease the pain and I can't sleep for the panic attacks. Terrific.

2am. And the pain-killing effect is wearing off faster than the panic attacks. So I get to be in pain and terrified, all at the same time. Christ, how much fucking worse can this get?

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Monday, 24 October 2011

Complex Needs

So, that appointment with the Complex Needs service.

I didn't want to be there, and I went in with a very negative attitude. I've never spoken to a male therapist, and I had no desire to start, but even as I was talking to him, I was telling myself that he couldn't help me if I wasn't up-front with him.

He was very ggod at asking searching questions, and he immediately homed in on my feelings about the many relationships that I feel have been damaged, as a result of the pain, over this last year.

It was a very traumatic appointment, with a lot of hysterical crying. But even as soon as I left, it started to help.

It made me look at my social interactions through a new lens, and as a result, allowed me to understand what's been going on, how I've been feeling, and why.

I realised how angry and jealous and resentful I feel at my friends for having the life I want, the freedom to do things, the sense of a future. And I realised how passive-aggressive I've been towards them as a result (and how like my Other Sister that has made me!).

I realised that being forced to 'receive guests' from my bed makes me feel incredibly unsafe and vulnerable to attack, even with close friends who I know without doubt would never hurt me. And I realised that my fear of being abandoned has become so great that I've been pushing people to do just that, either to get it out of the way, or to prove myself right.

I also now feel so unequal in these relationships that I'm subconsciously certain people will eventually walk away, and I expect, or even push it to happen. And there's the fact that I used to be an equal player in these friendships; I brought as much to them as anyone else - past experienced, current life events, support, need etc. Now my life is so empty, I have nothing to offer.

All of this has caused me to increasingly isolate myself, driving people away and making little effort to contact them, all because it's too hard. Each interaction raises all these issues, makes me feel like crap and makes me even less likely to get in touch in future, through fear of feeling that bad again.

Since the appointment I've been doing a lot of work on each of these issues. I've been trying to come up with techniques to address each of them, and I've been quite successful. There's plenty more to be done, but it's a good start.

It's just a shame that shrink told me there's nothing they can do to help me. They believe that 'reciprocity is the key to healing', and so ONLY offer group therapy. I don't feel able to do that - I can't even cope with friends talking about their lives - and he said until fixing these relationships is my top priority, group work won't help me. I pointed out that my priority is just getting through the pain each day.

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Pain is now so bad, I can't put my arm in traction, which means agonising shoulder pain plus raging neck pressure causing blinding headache. I want to die.

7.40 I've just crunched up 2 slow release pills, having already taken 2 half an hour ago. I couldn't take slow release ones because I'll run out - I got the doc to give me a post-dated prescription for the Oxynorm, but that means I absolutely can't get any more till 7th Nov. Which means that what I've got HAS to last till then. But I had to take extra because I'm in agony. So to conserve the Oxynorm, I decided to take the extra Oxycontin, but I had to crunch it up to make it immediately absorbable. Let's hope there's no backfire (though accidental OD wouldn't be unwelcome).

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I've had my arm under traction all day, as every day for the past week. It's the only thing that will ease the neck pressure at the moment, though even then it's really hard to find the right position to lie in.

But the pain started to kick off an hour ago (around 3pm) and it's been getting progressively worse. I took 3 top up pills at 3.30, but it's still getting worse and I now can't breathe. I feel stoned but in agony; all the morphine is doing is making me feel out of it, it's not touching the pain. I

s this because of too much traction or because I did the washing up? I don't know. I was going to go and collect my prescription, but I felt the rising pain wasn't going to stop - and I was right. Thank god - I could easily have got halfway there and been stranded alone at the side of the road.

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Sunday, 23 October 2011

Every now and again I suddenly remember the rehab testing next week, and I panic. I panic that they'll get it wrong, and say I can do stuff I know I can't. It terrifies me. Having someone judge you like that, it's horrible.

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Saturday, 22 October 2011

Really really bad neck pressure day. Was doing ok mentally, but this is grinding me down and I don't know how much more i'm willing to take.

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Friday, 21 October 2011

The pain's been very bad all day, as a result of driving to the doctor's. Despite it being such a bad day, I can still feel proud of managing to get up and ready and then driving all the way there and back. Apart from the pain flare-up, it all went very well -it was actually quite a nice driven because there was virtually nothing on the road.

It's just that I've spent the rest of the day stuck in bed, out of my face on morphine.

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Clever idea

Over the past few weeks, I've missed an awful lot of Lofepramine, because I was in too much pain to be able to get to the kitchen to take it.

The stuff is so gluggy and sticky, it has to be poured over the sink, and the spoon washed immediately, all of which means I've never been able to take it in bed.

It ocurred to me the other day though, that I could use one of the little travel bottles I take it in when I'm going to be out. I just swallow a mouthful - it's not exact, but it's better than nothing.

I've just used it for the first time, and it's proved an excellent idea. The pain's very bad today after driving to the doctor's (it kicked off after 25 mins driving, each way, which means my 'driving range' has reduced again - it was 40 mins). I've popped loads of pills, but still didn't feel able to get up to take my Lofepramine (mostly because I've found a comfy position, and don't want to lose it), so without my little bedside-bottle, I'd've had to miss yet another dose; this way, I didn't.

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Thursday, 20 October 2011

Big improvement

I just had a friend round, and it was the best social encounter I've had in months.

Following everything the guy at Complex Needs gave me to think about on Tuesday (which I haven't yet managed to bring myself put up here), it was the first visit in months that's really felt comfortable and guilt-free.

For once, the encounter wasn't tinged with anger or resentment. I didn't feel jealous of my friend's life, or annoyed that she was complaining when she had no reason to (and believe me, she has plenty of reason to complain).

I was able to sit and listen to her talking about her problems, to sympathise and offer suggestions. I felt engaged and included, instead of all the other times when I've felt separate and excluded by virtue of my pain-induced isolation.

I wasn't thinking about the pain, or how crap my life is. Even when I was talking about my recent troubles (the Complex Needs visit and the DLA), I felt relaxed and safe. I didn't need to take my fear or anger out on my friend. I felt like we were equals again.

We talked about the kinds of things I used to talk to friends about, like funny past experiences - the strange characters at my old Writers' Circle, the wierdo sci-fi creep with the wardrobe full of identical shirts and slacks, etc - and our favourite trashy TV - Strictly, obviously.

I didn't feel the need to apologise the whole time, because I know I didn't do anything wrong. Tuesday's appointment was a nightmare, but it was worth it.

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Wednesday, 19 October 2011

My landlord came round this evening to fix a tap. Unfortunately, I was feeling so shit and in so much pain that I couldn't get up. I had to lie down and shout through to him in the kitchen the whole time.

Do you know how humiliating it is, to have to lie there like that? And how vulnerable it makes you feel, even when the male visitor is a good friend that you completely trust, and with whom you know you're completely safe? It's fucking horrible.

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Tuesday, 18 October 2011

I want to go to sleep.

I have to get up and go to the poxy Complex Needs place, and all I want is to go to sleep, but I can't. One minute there's the pain, then the neck pressure, then the pain again.

I want to stop popping pills and go to sleep.

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Monday, 17 October 2011

God I feel completely stoned and I don't know why - haven't taken anything extra, so shouldn't feel this bad!

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My friends' visit has completely wiped me out. I'm utterly shattered, can't keep my eyes open, it's horrible.

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The insurance people just called to set up the functional rehab testing - at home!

Yes, it seems someone finally listened, and they decided not to make things tens times worse just for their own entertainment!

The conversation didn't start well when she asked why I hadn't got the doc to write to them about it, and denied having got my message about the missing request for an update from the doc. When she said she had a date for me, I thought she was about to try and force me into another trip to London, but no. She said it would be at home.

I'm still dreading it because it's 3.5 hours and I can't sit up that long, but at least it's not involving travel. Thank god.

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Just had some friends round who I haven't seen for ages.

It was really nice, though I did get upset early on. My friend J was concerned about me living off cereal and bagels; she was trying to come up with alternatives, but I just felt got at and that I was being told off for not eating properly.

I know she meant it with love, but it was too much for me and I started crying. Luckily she took the hint and changed the subject. The rest of the visit was lovely, including the very simple but tasty chicken sandwiches.

Interestingly, though, the chins turned their noses up at snacks from B. Maybe it was because they've not met her before, or maybe they didn't like her perfume. Anyway, they were quite happy having snacks from me or from J.

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Sunday, 16 October 2011

I did manage only one double dose of slow release morphine today, but the actual total consumption was the same, because yesterday I missed the 6am slow release pills and so the later double doses cancelled that out.

Both days I've taken 30-35mg of quick release on top; it would be better to take more SR and less QR, just to control the peaks and troughs and enable me to stay awake more.

So the aim for the next few days will be to keep it to doubles with no QR on top. Then it'll be down to singles in a few days. I hope.

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I never should have given up my Phd. If I'd carried on, I wouldn't even have been in the country when the accident happened.

Maybe I'd have had an accident in Ecuador. But there ate no air ambulances there, so maybe I could just have died in the crash. Every day, I wish I had.

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Very low. I miss going to work. Dressing up nice, talking to people, being in meetings.

I want to go back to work. I want to be a person again.

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Friday, 14 October 2011

Got shedloads done today, though had to put my arm into traction (lying down) between each task. Still in traction and no idea how tomorrow will pan out, but pleases with today, especially given that have only taken 30 extra morphine (compared to 70-90 extra last week).

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Thursday, 13 October 2011

Arm traction appears to have worked, fingers crossed - neck pressure eased after found exact right position for arm, legs, head and trunk.

Have just accidentally thrown my morphine away though - numpty!

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Need traction

I've had the TENS machine on my back all day and it was helping, along with being propped up high.

Increasingly, though, the neck pressure was getting worse and I could tell it was coming from my shoulder. I needed traction on my arm - it needs to be pulled slightly out of it's socket, I think because that's what's pressing on the nerve.

Unfortunately there's no-one here to provide the traction but I did find the pressure eased a bit when I got the right position and angle and pulled on it myself.

So I'm now lying on my back with my arm hanging off the bed. This is releasing the nerve, tho the blinding headache and nausea from it - let's face it, it's a migraine - is still bad and the TENS is still going. I can't get up to get my migraine pills, because I'll lose this angle.

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It's already a terrible day. Neck pressure is awful and it's making me feel sick most of the time. Shoulder pain is also really bad and so is my back.

Trying to get the morphine back down again, but everything's so awful, how can I?

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So much morphine I can't see straight, yet still in agony.

Help me.

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Wednesday, 12 October 2011

Bad day, though getting the DLA package in the post was fairly joyous. Now though :

shoulder pain - bad
neck pressure - very bad
back - terrible

It took hours to find a position that eases the neck pressure and I look like I'm in spasm because I'm so contorted. But anything else is just awful. If I lie any other way, the neck pressure is terrible; if I sit up, within minutes, the shoulder pain becomes unbearable. But I can only maintain the 'right' position for so long, before my hips start to throb and I have no choice but to move.

There is an OK position lying more propped up (at the moment) but I know that though it's OK at the time, when I get up, I'll have excruciating pain in my lower back and will be unable to stand up straight or walk even to the toilet

Morphine levels are two thirds what they've been the last few days, which is bloody brilliant. Except for the reason it's so low is that it's not helping the neck pressure, so there's no point taking any more. But at least I'm no longer trying to get through the forms and hence having to take extra in the hope it might work. Now, I might just as well put up with it. Especially as I've also had a bad tummy today, as a direct result of all that morphine.

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Tuesday, 11 October 2011

Proud of me

It's taken a helluva lot of morphine, and I'll probably come to regret it tomorrow, but I've got shedloads done today and I'm extremely proud of myself.

Here's what I've achieved:
Balanced my bank statement
Got morphine prescription (vital!)
Posted sick note
Dug out paperwork for DLA
Did a load of filing whilst putting the paperwork away
Put out yesterday's washing
Put more washing on
and, of course, finished the DLA forms!

Half of what I've got done wasn't even planned for today. It just wound up getting done as a means of procrastinating against doing the forms. Or it was a natural progression from doing something else.

Of course I'm in horrible pain and have just had to take yet more morphine, but with all those jobs done, I can now rest and recover and hope the pain finally goes down. I'm looking forward to enjoying a rest without the pressure of looming jobs.

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