Monday, January 28, 2008
There's a reason I won't take the Oramoprh that sits in my fridge. My friends and my doctors all think its because I'm stubborn, proud even, but that's just what I let them believe. To me it hails both reminder and warning, there every time I open the fridge door should I raise my head enough to see it.
A reminder that terrifies me, the kind of fear that sometimes wakes you in the night, and chills the pit of your stomach. A warning call. Of how things were. How they could be again. Under extreme enough circumstances. Should I lose control.
It was the weekend before I met Big. A few weeks later my family situation would reach such crisis point I would somehow find the strength to break all contact with them. Diagnosed only months before I was yet to develop the management and coping skills I have today.
I can't remember now what event caused the dislocation. The one that floored me that is. Much of that time is blurry. For that I'm grateful.
My hips and pelvis were so painful I couldn't weight bear at all. Stark words on a screen leave it sanitised, anaesthetised. It was anything but. Pain so searing, so acute I could not eat, sleep, talk or even cry. I could not get out of bed. Literally. Couldn't even crawl.
In such circumstances eventually a decision has to be made. To pee the bed or not. So to speak. I came up with what seemed like an ingenious plan under the circumstances. No fluid means no need to pee. Or so I thought. So I stopped drinking. All together. It's probably no wonder I can't remember too well. It seemed the most logical thing to do at the time.
I saw my GP first thing that Monday morning. He doubled the pain medication I then took, and wrote another prescription. For Oramorph. Spoke strong words to me about taking it. Of dehydration, danger, and never ending up that way again for want of strong enough pain relief to move.
I never have. It's always been there.
Sunday, January 27, 2008
You'll also know I'm not the most technically minded of people so I thought I'd ask for advice from you lovely lot. As far as I can make out Dragon seems to be the software to go for, but there are different versions, and I've no idea what the difference between the standard or preferred editions is, or if it's even important. Can anyone advise, please?
Saturday, January 26, 2008
What I still want to know, is why no-one is mentioning the original Ashley X surgery having been ruled as illegal? Oh, and the small matter of the dead surgeon. Maybe political correctness just sounds better?
Thursday, January 24, 2008
It was a great weekend though, a drink with Red, the girl I met at Toes' party, then a girlie shopping trip together on Sunday. Activities which leave me exhausted and unable to get out of bed for a couple of days worth every moment of that enforced confinement, sweeter still for having seemed as impossibly out of my reach as climbing Everest a mere year or so ago.
Earlier this afternoon I spoke to Star. She's still here, in itself a miracle of determination, modern medicine and a demonstration of how superb the NHS can be when doctors are able to work together in the best interests of their patient. Her last round of chemotherapy was so hard on her that as she put it "the sepsis came out to play" and she spent 10 days in a High Dependency Unit being treated for both that and the pneumonia they discovered whilst she was there. Now she must gain weight before the next round of chemo can be started, ideally aided by a different type of feeding tube were she not too ill for the surgical procedure needed to even be considered.
All this and more made me think of my many good fortunes, but I'm ready for bed again now and happily Maddy has written about just that today
Monday, January 21, 2008
Friday, January 18, 2008
We’ve both had meltdown moments about this. First me, then him, now he’s gone again I think I’m due another. It’s so much, so soon, an overloading of the senses, creating an almighty confusion in two people each just about able to admit they are notoriously bad at relationships. But still want it. Oh how I want it.
So I insist to him, he must be married, making it all up even. It can’t all be true. He can’t be true. What I don’t say but mean is that I am so afraid this could be it, he could important enough for me to turn my life upside down that for now I will look for any reason to pretend to myself he isn’t.
He is there, a moment, memory, pleasure, unexpected amongst the mundane rituals of my daily life. Doing laundry, amongst my socks, so small and brightly coloured I stumble over large stray black strangers. Boxer shorts hang proud a stark white alongside my dental floss thongs. His shirt worn by me, stirs memories and releases faint traces of his scent from its resting place as I open and close the bathroom door.
He has left his mark both here and upon me.
Wednesday, January 16, 2008
After my embarrassment when the woman fitting the alarm found both a bong and bag of slutty underwear in my wardrobe I was taking no chances and so had already unplugged the alarm system before she arrived. Unstable joints be damned, no stranger was going rummaging round in my bedroom again.
I've never been happy about having the alarm box in my bedroom, and did say so when it was first fitted but as the phone line enters the house there they insisted. I can be a force to be reckoned with, but even I lost against two firemen and a woman from er, the alarm fitting place. Funnily enough the firemen knew exactly why I didn't want the box in my bedroom without my having to explain, whereas the lady from the alarm company needed more hints. I must have been having some sort of psychic experience as in the first weeks after its fitting, the alarm went off, literally only minutes after The Sexy Irishman left. Cue one disembodied voice shouting out "Ms Bendy Girl, Ms Bendy Girl, are you there, are you ok?" whilst I attempted to get up the stairs without dislocating anything major in enough time to prevent a call to a keyholder, or worse the paramedics. Thus cementing my paranoia that the cat would set the stupid thing off just to spite me for ignoring it mid shag and not only would I have to deal with the mortification of the disembodied voice, but that they might listen in first. Ugh.
That was of course some time ago, but the alarm people seem to have a very strange way of doing things, and so only managed to come out to move the box last week. They phoned a few times to try and arrange a time for someone to come out and move the damn box, after issuing dire warnings that I was not to attempt it myself, however this is the public sector, and intended for more vulnerable members of society so whenever they phoned it would be to tell me that someone was in the area and could they come round in 10 minutes. The suggestion that they might book a time in advance and so avoid the problem of my saying no every time, usually because I was still in my pj's, seemed to be quite alien to them.
Last week a time was agreed upon and the same lady appeared. Whilst kitty #2 whored herself all over the poor woman as she likes to do with anyone who enters the house, but especially those clutching official paperwork, alarm lady found the box I'd helpfully left on the table, asked where the socket was, and plugged it in. Of course just like that. In the way I was absolutely.totally.not.to.do.myself. Pressed the button to check it worked and asked me where my pendant was. I didn't like to tell her that I thought it might've fallen under the bed after I'd knocked it on the floor and kitty #2 had a mad pendant attacking frenzy with it. I've not seen it since certainly. So I smiled and said I was keeping it by my bed. Which of course I was until I dropped it.
Monday, January 14, 2008
Updated: You can download Pods & Blogs here from the Radio 5 Live listen again feature. My mention is starts at 23min55secs. Not that I'm narcissistic or anything.
I'm very chuffed that the host of the show, Chris Vallance, said "I think it's a wonderful blog this, because it's a blog from somebody who's in a difficult spot talking about their life" Actually, I just like the bit where he said it was a wonderful blog.
Saturday, January 12, 2008
It's good news. No medical, no further information required, my incapacity benefit (in reality income support) will continue until a routine review in 2012.
Of course, being the complicated kinda girl that I am, my aim for this year is to somehow figure out how to get off benefit and find a way of effectively supporting myself financially from home. For now though, the relief is indescribable. Up there with looking over and seeing The Captain sleeping on my sofa as I write.
Wednesday, January 09, 2008
Tuesday, January 08, 2008
Now, you can call me a
Now, I happen to have been fortunate enough to have been finally diagnosed and have seen a specialist in bendy people in Leeds, but that doesn't mean I don't need to see a consultant rheumatologist closer to home on a regular basis. So first of all, Mr Brown, whilst you happen to be on the subject of NHS funding, I'd like to be able to see my consultant again please. Once just wasn't enough. A nurse specialist, however nice, isn't the same, and at my last appointment where, because I have a complex condition she needed to seek advice from the consultant, she was sorry to tell me that although I should be seen again in six months, the government's lack of understanding of chronic conditions means they've cut funding to the point it'll be a minimum of 12 months. Those of us with chronic conditions are I assume the same people you're all so desperate to kick off incapacity benefit, so unless your plan is to cut the benefits bill by ensuring none of us can provide the name of a doctor treating us at hospital in supporting evidence to our claims, then I'd suggest that one of the most important things for getting people into, and keeping them in work is putting much needed funding into those areas of the NHS really most affected. The dull, day to day routine stuff. As opposed to whatever you came up with as a headline grabber whilst eating your breakfast.
Social care. That old
Equipment. It would be nice, if you'd like us all to go out to work, if you could see your way to providing suitable equipment. Claiming that people are too disabled to use equipment such as bath lifts may seem the height of illogicality, but you'll have to trust me on this one, it's a common excuse used by social services occupational therapists when refusing people the vital equipment they need. Health and Safety you see. Might fall, injure yourself and then sue the council who provided said equipment. Thus conveniently saving themselves a great deal of money. Especially when rationing care packages at the same time. Turning the basics of life into an even bigger battle than they need to be puts unnecessary barriers in the way of work, and that's before we start to look at wheelchairs. Not exactly luxury items these things now are they?
Access to work. Once again, nice idea, shame about the reality. Anyone sensing a pattern here? I won't bang on about access to work, partly because it upsets me too much, their delays both in assessment and provision of equipment being a significant factor in my having lost the job I fought so hard to get, and instead I shall refer you to Mary's more recent experiences with them.
Tax credits, council tax benefit, housing benefit, Disability Living Allowance, free prescriptions, the list goes on. Its impossible, even with the laughably named 'better off' calculation to get an accurate financial picture of whether someone will actually be better off in work or not. Particularly when, despite it being non means tested, in reality it's all too common that entering the workplace is used as an excuse to remove an individuals DLA.
There are more, but I shan't go on, I'm depressing myself if not everyone else. What I will say is this. Mr Brown, and Mr Cameron, the leaders of our main political parties, both men who coincidentally are fathers of disabled children. Shame on you for using that when it suits you, and choosing to ignore the true reality of most disabled people's lives when it doesn't.
Saturday, January 05, 2008
Friday, January 04, 2008
Over a cup of tea we decided to go out to costco and road test my new wheelchair. I was too tired to blog about it in the run up to Christmas, but suffice to say the NHS rules I've posted about before mean that as my upper body is too unstable to even consider the kind of chair you self propel and as I have some, albeit mobility I'm not entitled to a power chair, I have ended up with what is officially called a transit chair. In reality that means my friends get to push me around, and if yesterday's experience is anything to go by, I hang on as best I can whilst alternating between screaming with laughter and fearing for my face. I really should have strapped myself in. I knew Roland with his love for speed would not be able to resist seeing if the chair could do wheelies with me in it. It can. You'll all be pleased to know. And we only had a few Lou and Andy moments freaking people out when I got out of the chair and walked.
In all seriousness I'm liking the chair. Even if it's too heavy for me to lift, or move in any way. Even if it has to live in the boot of my car, where it doesn't quite fit properly, making life a bit difficult for anything else that might need to go in there. How could I not love something that's sparkly purple?! It was wonderful to be able to go out for the day and not to have to come home and go to bed after a couple of hours though. Trying to 'walk' on hips that dislocate produces a kind of pain and exhaustion that I don't really talk about in the 'real world'. Once again being honest, it's less to do with not wanting to complain as the nurse specialist thought it was, and more to do with not wanting to acknowledge it to myself. If I start doing that anywhere but here then the enormity of it would probably overwhelm me and as not coping isn't an option that isn't a choice I'm going to make. That said, it was wonderful to just relax and let Roland do the hard work for a few hours, which as he said he is more than happy to do. It was even better, and more unusual to be able to go out for something to eat afterwards, I felt almost normal for a few hours. A grand day out!
Wednesday, January 02, 2008
First I spent the best part of half an hour desperately circling the car park looking for a space along with every other car unable to find a space. The disabled spaces were particularly difficult to find, many I noticed being occupied by extremely expensive, top of the range new model cars without blue badges. Eventually I was able to park after just waiting by the disabled bays for around 10 minutes until someone left. This though is the same hospital that blocked off all bar one of its disabled bays outside the physio unit for several months last year.
I went to visit one of my neighbours before going to my appointment. She had an operation this morning, was full of praise for how wonderful the staff were. They did seem to be, lots and lots, of friendly, nice nurses standing around. My neighbour was in an 8 bedded bay. There were 5 empty beds. As the wind whistled outside, the windows rattled and I could smell the faintest hint of cigarettes from the mothers to be smoking below.
When I arrived in outpatients I found it was very busy. Nothing like the well staffed, half empty surgical ward my neighbour was on. This was packed out. Running late. I was reassured by the receptionist it wouldn't take too long as I was seeing the nurse specialist. Not too long turned out to be around 30 minutes. It wasn't. I remember orthopaedic clinics where not too long was 3 hours.
The nurse specialist was honest. Management of chronic conditions isn't a priority for the government. We're supposed to be looked after by our GP's. Diagnosed. Treated. Discharged. No matter how unstable the condition. Just hope you're one of those lucky enough to have a good GP. For those of us who need long term looking after this is it. No bright shiny wards with patientline and named nurses for me. Just an overworked nurse specialist, kind, caring, good at her job and unable to do it properly. To use this government's NHS I have to have something that can be fixed, put in one of their beloved boxes, ticked off and filed away. Like most of us who's need is most, I don't.