I wish I was a dog. Or a cat. Or a squirrel. Anything but human.

Only a human would be left in this kind of pain.

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Worst night ever

Had the worst night ever last night - electric-shock pains through shoulder all night and still going on. Morphine not touching it.

God I feel like shiit.

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Get worse before better?

OK, so, an update.

The meditation is still going well, and I'm still feeling more generally positive and able to do things then before (though I have had several hideous nights and have been giving serious thought to taking a LOT of pills).

The mindful movement exercises are definitely having an effect, in the sense that the range of movement has increased. The downside seems to be that the surrounding musculature is obviously really weak, and so I'm actually getting more pain and am having to take more morphine than before. I just have to hope that if I keep going, the muscles etc will strengthen and the pain will reduce a bit.

The dislocating also seems better since the exercises. Now, rather than dislocating and then locking solid, it's cracking but keeping going.

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Up and Down

Pleased that managed to ease screwdriver-in-the-eye headache today with meditation rather than meds, but still pissed off that haven't been able to swim for a week because pain so bad.

Meditation homework for the week is to practice recognising which 'mind' I'm operating in, and switch over if it's not the best one for the situation. Feeling a lot like Worzel Cummidge...

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Came perilously close to taking a fistful of pills yesterday. Not to try and do myself in (risk of that accidentally happening was actually what stopped me) but just to get a break from the pain and the hideous side effects from the pill I'd already had to take.

Today's not looking any better either.

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Please make it stop

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Unexpected discovery

Had a huge pain flare up at work today (sitting in a meeting, unable to speak and couldn't move for an hour after everyone else left!). Ended up having to take two morphine pills and wait an hour and a half just to get out to the car.

The interesting thing, though, was that as soon as it started, I could tell it was going to be a huge kick off; there was none of the usual uncertainty, wondering if it will flare up then drop off - I absolutely knew it was going to be massive. That meant I was able to take the first pill really early on - despite how bad it was, things would've been a whole lot worse if I'd waited.

This has to be a consequence of the meditation - developing a greater awareness of your body and your pain means you can better interpret what's happening and act accordingly.

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Feeling like shit today - shoulder's killing me, lot back pain that's probably from swimming yesterday, and very depressed.

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In the still of the night

It's 2.50am and I've been lying here for four hours, trying to sleep, watching the world go round from the morphine pill I had to take because the pain was keeping me awake and the meditation just couldn't touch it.

The upside is that as I've been lying here, I've worked out a new work schedule to build in the meditation and swimming, and realised that the lump developing where I split my lip is probably an abcess.

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Victory!

I am delighted to announce that I've just been to the pool, and it all went swimmingly (pun very much intended).

Felt a right tit cos had to use a float cos of pain, but I swam and I feel great for it!

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So, this was my Sunday

Didn't do the mindful movement exercises yesterday, and very stiff and lot pain today. Don't know if there's a connection or if it's a coincidence.

Managed to stay awake throughout meditation this evening - first time in a week. Feel totally knackered now though - lot more than before I started.

Attempted to go to the cinema this afternoon - it's been over a year since last time. Was all going fine till discovered website was wrong & movie not on. Suppose at least I can put the failure down to their ineptitude, rather than my pain.

Hmm what rhymes with 'Vue' and suggests that something is crap...

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Update

So far, it's looking like:
*meditation in the morning, tho will require getting up earlier :-(
*mindful movement in the afternoon - dislocating is esp bad after driving, so arriving home from work is probably a good time.

Interestingly, am now finding breathing is better during meditation than at any other time - ironic, given that breathing issues was why never tried meditation before!

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Ohhmmm

Taking some time off work to concentrate on how to get max benefit out of this meditation stuff.

It's going well, but anyone who thinks navel-gazing is easy, isn't doing it right...

Incense, tinkly bells and humming to follow.

Helluva week...

Quite a week, and not in a good way. On Tuesday, I sat down in 'the mother ship' and noticed smoke rising from down the side of it - the heatpad for my back was on fire! Luckily I spotted it before it caught properly, but it scared the living shit out of me.

Then yesterday, I got out of the car to go across the carpark into a pub - only a few yards, so didn't seem necessary to take my stick, but as I walked away, the pain exploded. Had nothing to lean on, so tried to get back in the car in a hurry because in so much pain couldn't stand up. Wrenched the door open at the same time as falling into the car - and split my lip wide open on the top of the door. Blood everywhere, nearly knocked myself out, and have no idea how I didn't lose a tooth, Face all swollen today, can hardly speak or eat, certainly can't smile, but then again, have no desire to.

Unadulterated-smugness alert

OK peeps, I'm about to blow my own trumpet, so if you want to avoid this shameless display of smugness, look away now...

Had my first tutorial with meditation teacher, and apparently I've done extremely well for a newbie. She was very surprised at a) the things I've achieved and b) the things I've worked out as a result. She kept starting to explain something, then I'd agree with her, and point out the next step (that I'm not supposed to know about yet).

Feeling very pleased with myself...

Meditation can replace morphine...

Terrible, terrible back pain today - was looking like a morphine day from the very start. Used the meditation stuff though, and managed to ease it that way. Had to keep repeating it through the day, and eventually had to take a pill at night for shoulder pain, which the meditation couldn't touch, but massively delayed having to take it and meant only one required, and only a couple of hours of SEs - result.

Meditation is...

 ... BLOODY HARD!

And you can get some really wierd reactions - my first full session left me with an evil, asthmatic-y cough. The session was very relaxing at the time - I didn't actually want to stop - but when I got up at the end, the coughing started, to the point of retching. 24 hours later, I'm still coughing...

Latest discoveries...

* hot and humid air eases the back pain and neck pressure - all I need now is my own private steam room.
* when my shoulder feels like it's dislocating, doc says it probably is. Sling helps, but can upset back.
* swimming is possible, in very warm water, and with a swimming noodle. Looking for suitable pools in the arera.
* my mattress makes my back worse - ordered a new one, but the shop doesn't seem to understand that when they receive payment they're supposed to DELIVER THE POXY GOODS!

I've also just started a pain meditation course. First session did not go well - full on panic attack and had to stop - but I shall persevere.

So, latest update...

Most of the time my arm feels like it's literally falling out of my shoulder. I'm also getting so much pain now in my back it's pretty unbearable, and at least once a week I have to take a morphine pill, just so I can sit up, draw breath - you know, the usual stuff! I didn't want to go back to taking morphine, I'm terrified of getting reliant on it, of my body getting used to it, of having to go through that awful withdrawal again. But there are times when it really is the only option. I never know what the side effects going to be though. Sometimes it's the crazy, dizzy, stoned feeling; sometimes I feel I'm going to throw up for hours on end; sometimes I feel like I'm suffocating; and sometimes there are no side-effects, it just takes ages to have any effect on the pain.

All of this, of course, means that whenever I take one of these awful pills, I have to be prepared for any, or all, of these side-effects - so I have to be in a situation particularly where I don't need to drive.

I've also now chopped off all my hair - not exactly because of the pain, but in part. It was becoming so difficult to wash, style, do anything with, and of course it was also so heavy, there just seemed no point now in having hair halfway down my back. So, in typical me fashion, I chopped the whole lot off! It was actually very liberating (though the hairdresser was terrified I would change my mind!) and I'm loving my new look!

I wanted to be able to donate my hair to a charity that makes wigs for people who have lost theirs for medical reasons - I managed to find one via the Cancer Research Trust website. They make wigs for children who've lost their hair due to chemotherapy or alopecia. It's great - they guarantee that the hair won't be used for anything else, and that's particularly important, because I didn't want anybody making a profit from it.

At least there's one bit of good news amongst all the crap...

Venting, not planning

head in the oven
bungee jump without the bungee
forget to pull the ripcord
sharp knife to the wrist
drive into a wall
roll the car
lotta pills
long walk into the sea
swan dive off the back of a boat

Better it's here than floating round my head.

Probably the worst night I've had since all this began.
I don't know how I'm supposed to keep doing this, day in, day out.

Pissed off. Fed up. Frustrated. Annoyed. Disappointed. Angry. Upset. Betrayed. Exhausted. Hopeless. . .

How I feel about the having had to sit here all day, doing nothing, bored shitless, watching brainless TV when I'm desperate to work and finally have shedloads to do, but I can't even sit at my desk, because of the pain.

I fight to be allowed to work, make a huge fuss about a normal workload, then go and overdo it by - God forbid! - thinking I can work to my mental capacity instead of my shitty physical incapacity.

WHAT IS THE FUCKING POINT?

Because I don't have enough to contend with...

I want to write something here, but I don't have words for how shit things currently are.

Not only do I have to fight endless pain, I now have to fight my boss, who is trying to drive me out, and is using my disability as an excuse. Her response to me going to Personnel about it - having exhausted the nicey-nicey options of speaking to her quietly, friendly meetings and prompting emails - is to now nitpick at every tiny word, to try and prove how much better than me she is. Except the things she's picking at - they aren't things I've done wrong. They're opposing opinions, different viewpoints; no less valid than hers, and no less well-informed, just different. Or they're things where she's changed the brief, without telling me (or she's purposely never quite got round to providing the brief, so she can constantly change the rules!). Or they're little details in the debate that are so insignificant to the actual question that I haven't bothered to mention them - I haven't felt the need to demonstrate I understand the minutiae of the situation, because I'm secure enough in my abilities to think that others will know I know them.

Yet she feels the need to point them out, to try and make me feel small. If only she knew that I grew up under a master of that kind of manipulation and manoeuvring, and that she's a rank amateur compared to him! Or that the very accident that put me in this situation also finally allowed me to break free of the legacy of that kind of treatment, and see it for what it is - the desperate attempt by a weak-minded person to make themselves feel powerful.

In reality, all she's really doing is showing off her own insecurities, making herself look unprofessional and insignificant. I mean, what kind of person picks on the disabled employee who's known for her determination to keep working despite the pain and the limitations? What kind of person thinks that sort of behaviour is acceptable? She's so desperate to prove how indespensible she is, that she's actually becoming a liability. She knows damn well that not only can I do my job, I could do hers too. And if she's not careful, her little campaign against me will get the whole lot of them sued.


Turns out I was wrong - there are words for how shit things currently are.

Did you really just ask me that?

What is it about wearing a sling that makes people think it's OK to ask intrusive, personal and potentially upsetting questions?

'What have you been up to?'
'So, what's actually wrong with it then?'
'How did you do it?'
'Can't they do anything about it?'
and, my personal favourite, a new low reached today:
'Was it your fault?'

They'd never do it to someone in a wheelchair - they wouldn't dare. But wear a sling, and they're off. It doesn't matter how vague an answer you give, how much you try to change the subject. It's like you're not really wearing a sling, you're wearing a sign on your forehead that says:

'Of course, Random Stranger, I would like nothing more than to be grilled by you about my problems. No, no, please do go on - your inane curiousity is of far more importance than my privacy, or desire not to be reminded about what happened.

Oh wait, you want to tell me all about YOUR car accident? Why yes, you're right, that's even MORE fun!'

Good God!

I think it's all linked in to what I call Disabled Access Syndrome; the assumption that disability=wheelchair. Maybe it's because the wheelchair is used as the sign for disabled parking, access etc, but there seems to be an assumption that:
a) if you're disabled, you are therefore in a wheelchair
b) if you're not in a wheelchair, you're not really disabled (and your condition is, presumably, somehow temporary).

Think about it: disabled toilets are all set up for wheelchair users, but not for the rest of us - no mirrors, sinks or hand dryers at standing height. As a tall person with difficulty bending, this causes me huge problems. Disabled changing rooms in clothes shops are the same - there's lots of space and somewhere to sit, but no full length mirror. I need that changing room so I can sit and rest, but what if I'm trying on a top - am I supposed to guess how it looks? Or squat down? Companies think 'put in a ramp and we're sorted', but getting up a ramp is harder for me than steps are - I need low-rise steps, with handrails ON BOTH SIDES. I could go on.

So, since you're not in a wheelchair, you can't really be disabled - just a bit inconvenienced maybe? - you can use the ordinary toilets / changing rooms, right? And since your - ahem - problem, is only a minor inconvenience, there's no reason why I shouldn't give in to my natural curiousity and ask you all about it, is there? I mean, it's not like it's anything serious, or permanent, after all.

I bet if I were missing my arm, they wouldn't be so damned quick with their questions. Yet if I was missing an arm, I'd be a whole lot less disabled; like I've said before, I could heal, rehabilitate and move on. Look at people like Heather Mills (leg not arm, but you get the gist) - I can't even go to an ice-rink to watch people skate, never mind get out there myself, yet she can.


God, this whole disability thing would be a lot easier if people weren't so fucking ignorant.

One question answered

So, the mystery of the neck pressure and screwdriver headaches appears to have been resolved, by a throw-away question from an optician in estate agent's shoes... trigeminal neuralgia.

http://en.wikipedia.org/wiki/Trigeminal_neuralgia
http://www.patient.co.uk/health/Trigeminal-Neuralgia.htm

Thought for the Day

Living with chronic pain is like walking on quick sand. You never know which tiny move will suddenly set it off, and once it starts, you're powerless to stop it.