Friday, September 26, 2008

Clumsiness is...

…..kicking wet cat food all over the floor as you fall backwards over the cat…then opening the cupboard under the sink to get cleaning products…knocking half of the cupboards content’s all over the floor, smashing a bottle in the process…then banging your head on the way back up!

All shortly before you slip on the floor you’ve just attempted to wipe, then realise you’ve burnt your inner thighs. With a bowl of soup you didn’t realise was hot as you balanced it there.

Wednesday, September 24, 2008

Turbulent Tuesdays

Life is a bit hectic at the moment, and yesterday was no exception. Freak clinic day. I can't believe it's been a year! Actually, it hasn't, I went to freak clinic six months ago but I don't think I blogged about it.

Freak clinic went well. Dr FC said how pleased he was with my mobility and commented on how much physio I must have been doing to have gained this kind of control. Especially as he feels (as do I) that it is highly unlikely I'll ever be able to keep my hips from dislocating with each step. It works a bit like a sublux or partial dislocation as I weight bear, in that my femur returns to the socket on it's own, but is a more full dislocation in the distance the femur pulls out of the socket each step. With the strange sensations I've been experiencing recently along with some increase in palpitations Dr FC wants me to have a 24hr ECG, but said he thinks I am right in my theory that the sensations are caused by spinal instability and the palpitations etc I'm experiencing are because the heart is a muscle and affected by the defect in my collagen in the same way my other muscles are.

Dr FC also wanted to run some blood tests. There is a very good reason that the medical profession don't like the government plans for things like polyclinics, and yesterday's appointment was a perfect example of why continuity of care is so important in medicine, and in ways that politicians just don't seem able to understand. I first met Dr FC when I was newly diagnosed with Ehlers Danlos Syndrome. Since then he has been able to get an overview of my changing condition, been able to build a picture of how much my body shape has altered, the symptoms which accompany it, and because he knows me, he also knows I can and do dislocate my thyroid gland regularly. That's the kind of insight it's impossible to get when you only meet a patient once, and the kind which gives doctors the ability to judge when further tests are or are not needed. It's what will be completely destroyed if polyclinics are pushed for, and ultimately I believe will only cost more taxpayers money as patients will return for multiple visits with different 'health care professionals' whilst they try to get to the bottom of a clinical picture of which no-one is able to take overall charge.

I went to get blood drawn after my appointment. Now, every woman likes to be given compliments. It's like, in our genes or something. Next to the 'light blue touch paper and stand well back' strand of DNA I should think. There's a time and a place though. So to the phlebotomist who told me he'd never forget a face like mine, then looked directly at my breasts, laughed and said he'd never forget parts which looked like that either I'd like to say whilst it's lovely to be appreciated, I'd prefer you didn't do so whilst your colleague is sticking a needle into my arm. Thanks all the same.

Once I was home the BYM (long overdue for a name change so from this point on known as Roland) popped round for a cuppa. He was in a car accident a few days ago where someone skipped a red light and smashed into the side of him. He's very lucky as the car is a write off, and he went to A&E on a spinal board, but fortunately is just very stiff and sore now with nothing broken. As he left, Jenn turned up and we sat and chatted for a couple of hours.

By the time Jenn had gone and I'd managed to get nothing,a few things
nothing done it was dinner time and although I had enough spoons to eat, I didn't have enough to sort anything out for myself. So, Fruitrock and I went to a local pub which does buy one get one free meals. Pretty much a heart attack on a plate, but still, cheap and put in front of you. I think we managed to clear the area around us with our discussions about whether it would be better to become a dominatrix or sell used underwear online to make money. Our conclusion so far is that the used panties idea, whilst a good one is flawed by the actually having to wear them part. Don't you just love the recession?

We then returned to mine to ask google whether women really poo themselves in childbirth, discuss my teenaged theory that having sex was no different from using a tampon and the 'slug' Fruitrock found on her leg and showed her mother in utter horror. During that conversation the knowledge that there was no slug seemed to distress Fruitrock greatly. Her slug theory being way better than my tampon sex one....vaginal mucus anyone?!

Monday, September 22, 2008

That'll Make You SmileSweat

As mentioned, my laptop has being playing up recently. I'm even more dependant on my laptop than Amy Winehouse is on white powder and bad boys, so if ever there is a problem it stresses me out. Alot. Alot alot.

Last week, after a few niggles the charger started to play up and although my laptop was working fine, it just wouldn't charge. So, having had positive experiences there in the past I headed to PC World thinking that at least I'd be able to pick up a replacement power supply there, even if it was a bit more pricey than elsewhere.

Pricey is an understatement. I asked the exceptionally stupid nice man if he could take a quick look at my laptop and give me an idea of what the problem might be. I did say I was fairly sure it was the power supply as the laptop itself was working just fine.

That's where it all got a bit, well, surreal. I realise leaning in porn star pose can be a bit distracting, and perhaps it implies I have the kind of mental acumen most people might believe a porn star to possess, but still. I am not stupid. Um actually...........no, I'm not stupid.

So, when the man dutifully tested my power supply and first told me it was fine I did wonder. Then when he changed his mind as my laptop used it's last remaining battery to turn on just fine and said it was the power supply I wondered some more. Particularly so when the laptop switched itself off in front of him and he said it wasn't the power supply after all. Probably the mother board in fact. Oh, and the power supply needs to be ordered from the manufacturer.

Thinking it was the most stupid technical advice I'd ever heard, I still asked for an estimate of the cost to fix it. £220 for parts and labour. Plus VAT!!! I nearly fell over, and just asked what the point of that was when I could buy a new laptop for less.

Having taken PC World's extortionadvice on board I went to see Ziggy. Stressed wasn't quite in it. I was really worried I was going to be faced with a bill for a new laptop at a time I need to try and save first month's rent, deposit and moving costs. That's going to be a problem alone, but with rising cost of living the prospect of having anything else to shell out for is not a happy one.

Ziggy is as skilled with hysterical females as he is with computers, so having helped me to the office he suggested I use his laptop whilst he looked at mine. Before I'd even had a chance to check my email he'd tracked down the problem. A blown fuse.

£220 minimum parts and labour plus VAT for a fuse. New fuse 25p. Having a Ziggy in your life- priceless.



You know how it is when you get chatting to a complete stranger and they tell you all about how they were in the SAS? There's one in every pub!

So, I didn't believe the man I spoke to earlier who told me all about his father's incredible exploits....until I googled the name he gave me that is. He's the spitting image of the man in the photo, Sgt Dougie Wright MM. RIP

Sunday, September 21, 2008

Dark, White and Milk

I love to death walk. That acute, relentless burn spreading out through my joints from core to tips. Washing away all thought and emotion in the need to focus so powerfully upon movement brings, eventually, a freedom and clarity of mind. Repetitive of route I love to watch the changing seasons play out in growing children's games amongst colours of trees and plants.

FloatingStumbling along today I measured changes passed in the year since I wrote about the strength of my chocolate lust. My walking has certainly improved in a physical sense, even if my hips violently disagree, but more it has linked me back to a world I'd thought lost for good.

It started more like three years ago. Perhaps even four or five. So gradually I didn't notice and so fast I couldn't not, my world shrank to four walls and a screen. A time much of which is blessedly blurred to me now. Cold, hunger and despair can never be forgotten, but nor should they be too closely remembered.

A moment of clarity driven by bitter despair. Two different views of a future played out as clearly as any Dickens' ever wrote. Wanting neither, still I wanted one less. Understood all I had to do to be me.

There were many months I was too weak to do more than sit. Exhausting myself at first for seconds, eventually long hours spent sat working my body to build some kind of strength while I fought for my mind to understand.

Those first few haltering steps blinded me with the brilliance of a world too long hidden from me. I would battle to go half a dozen paces away from, then back to the house. Increasing the number by one a day. It was perhaps another year before I celebrated rounding the long since closed sweet shop on the corner. And another yet before the welcome taste of chocolate to come.

As lives and seasons moved on around me, I built one anew. More different than I could ever have dreamed and all the sweeter still for earning.




Friday, September 19, 2008

I'm having problems with my laptop at the moment, so I'll be back posting as soon as it's all sorted. Have a great weekend!

Tuesday, September 16, 2008

Sinking Ships

There is much speculation about which cabinet minister may be about to resign. I'm going to throw my hat into the ring and say according to my sources it'll be David Miliband who goes. And if not, I'll blame my source!

Updated: Nothing like being wrong in public! Miliband has definitely got his eye on the leadership though-too many public protestations to the contrary.

Monday, September 15, 2008

Manic Mondays

I had a hospital appointment today. With a rheumatologist. A proper doctor this time, how exciting! Rheumatology is as overwhelmed with patients as it is underfunded, so to try and address this problem the trust in my area are employing locum consultants.

Of course it was eventful. I can't open my front door without ensuing chaos and today was no exception. I actually found the hospital without getting lost, quite an achievement as my sense of direction is so bad I don't even know which way I have to turn out of my road to get to the shops. Despite the easy journey I couldn't find a parking space at the (community) hospital, set up to serve mainly elderly and vulnerable people by people with no understanding that most have terrible mobility problems. Fortunately with a bit of flirting the car park attendant allowed me to park my car outside the building I needed and kept an eye on it for me, though it was still a struggle to make the distance to clinic.

I saw a very sweet old man who had I not known better I would have thought pre dated the NHS altogether. No, not in the waiting room, he was the consultant. I'm used to the look of bewildered horror I get when I see a new doctor these days, and it always goes one of two ways. Either they are so freaked out by it all they try to pretend I don't exist and make out I'm telling a pack of lies in the hope they'll be able to bluff their way through the consultation or they remain bewildered and freaked out but do their best to help. Fortunately today's doctor fell into the latter category and was really very sweet. I'm not quite sure why he kept winking at me though. Perhaps he was as keen on the pink tights as the workmen who all stood in a row and stared at me when I gimped past them. Yep. It's got to be the tights.

After some stripping, various exclamations of dismay at my joints, a few dislocations and much wobbling not helped by the nurse who kept making me laugh, I was sent off to have x-rays of my hips, SI joint, and spine. It should have been very straightforward but the computer system was hideously complicated and outdated, which in combination with my sweet old man consultant caused many problems. 10 minutes and 1 medical student, 2 nurses and myself having made (helpful of course) suggestions the x-rays were booked.

After the obligatory questions from the clinic nurse about how on earth do I remain so cheerful

I stupidly insisted on walking to x-ray
as I could see the building about 20 meters away and only discovered when it was too late that I had to go so far around to avoid the building works that I nearly didn't make it at all. I took the lazywise option of a wheelchair back to clinic after I'd had my x-rays as the consultant wanted to review them there and then.

When I arrived back at clinic there was much bitching from the other patients. All of whom were elderly and more mobile than I. I apologised and said it was my fault the doctor was running late but they were having none of it and carried on moaning. I hope they weren't rude when they got into their appointments!

Then it was time for my favourite medical explanation ever. It goes something like this....well, it all looks normal. Except it doesn't look normal at all. I just don't know why. Oh, and you've definitely got some sort of congenital abnormality there, but I've never seen anything quite like it before. I never keep a straight face through that speech! Happily my hips/SI/spine aren't showing much degenerative change yet, though even I could tell the x-rays just looked a bit, well weird. There's no other way to describe it really. The concern is that with the amount of stress I put on my hips by 'walking' on them as they dislocate in and out that eventually they may just fracture.

I was booked in for my DEXA scan and invited back in four months time, whilst the consultant quizzed me about what I did to keep my brain active and then about the world of blogging. Bless.

The very nice nurse wheeled me out to my car. At which point my proprioceptive genius kicked into action and I scraped it along the wall I'd parked next to.

Then I finished off my chaotic day by coming home to wait for the nice man to arrive to fix my shower. I sat on the loo eating my soup while he begged me to just give him a snog at least. Which is far more innocent than I've made it sound. Apart from the begging to be snogged thing. That I'll leave up to your imaginations.

And if today's doctor should manage to find this blog, which given his technological skills I somehow doubt...thank you. You were kind, considerate and wanted to help. I appreciate it and hope the other patients didn't give you too hard a time.

Saturday, September 13, 2008

Strange Saturdays

It's been one of those days. No, not that one, the other one. Blogging is great for many reasons. One being that it's connected me to a world full of people just as capable of chaos in their lives. Oh...and setting their cat's tail on fire. Twice. Damn - burned fur smells awful!*

I went out earlier to meet my old school friend, Marie. I expected to be out for two hours at the most so arranged to talk to someone online at 5pm ish. It being one of those days I did keep the second appointment. Four and a half hours later.

In between time there had been a little beer drunk by some, and a little green smoked by others. We abandoned the bar we were in to come back here so another friend Jenn could try on my underwear. Whilst waiting for Jenn I answered the door to three very pretty, but very young men boys. Wearing bright yellow tops and ostensibly selling offering invitations to sponsor endangered Antarctic pink shrimps or something.

They were far more interested in coming in to have a party with Marie and I. Who were both slightlytotally destroyed, though perhaps not as much as my swaying made them believe. You could literally see the words 'Mrs Robinson' light up in neon over these boys heads. Even when I told one I had shoes older than him. I dread to think how many women had already let them in that day! Give them their due, they worked hard to try and persuade us to have a party with them, considerably more effort than they were willing to give the Antarctic prawn sponsorship. As Marie and I went to a girl's grammar rather than Lolita's whorehousethe local convent school we were paranoid it was a distraction burglarly/fishing scam rather than adolescent male orgy fantasy so we turned them down in favour of watching Jenn model my underwear. At least I can grant one of their wishes. To be immortalised in writing.

I promised to immortalise not infamise. Which as it turns out is not a word. According to dictionary.com. But I like it so much I'm going to make it one. Remember where you heard it first.



*No kitty's were harmed in the course of them setting their own tail on fire.

Thursday, September 11, 2008

Behind every political decision affecting the lives of disabled people.....







Is a politician just like this....








Tuesday, September 09, 2008

Feel The Fear

Life as a disabled person on benefits is always a bit of a knife edge, somewhere in the back of your mind is always the possibility that your world will be ripped from underneath you. No-one can live with stress levels like that though, so most of the time it just sits there, underneath day to day life like an impossible to trace bad smell beneath the floorboards. Horrible, but impossible to change so you somehow get used to living with it.

Until something changes and there is no choice but to face it. For me that change came today in the form of finding out the house I live in is to be sold.

I can't begin to describe how frightened I feel. I have no assets, no savings, no income apart from benefits. I can't buy because property is so expensive and even if I could self certify a mortgage on housing benefit in these financially strained times I couldn't afford the £120 + grand I'd need.

I have to move. In itself that's no bad thing as the stairs are a major problem in this property. The issue is finding somewhere I can move to. A phone call to the housing department of the local authority revealed I'd somehow fallen off the waiting list for social housing two years ago. Fortunately the kind advisor I spoke to has managed to reinstate my place so I have 3 years on the list. Which is apparently good for a single person without children.

That's about the only good part. The vast majority of local authority/housing association ground floor properties are set aside for older people. The lowest age they will accept applications from is usually 55 and even if it were appropriate for me to live in sheltered accomodation for the elderly, it is unlikely I'd be allowed to apply. This means that every disabled adult in need of ground floor social housing is competing for the same minute number of properties.

I could rent in the private sector. If I can find a property which will allow a DSS tenant with a pet. And a smoking habit. Most are advertised as no pets/smokers/DSS. I do have the advantage of being a
nicely spoken middle class princess, but even if a landlord will put aside all those requirements the amount of housing benefit I receive will be £100-250 below the average market rent in the town I currently live in. Local Housing Allowance will only make that situation worse as it draws from across a much larger area to average out the rents. Basically to force those on benefits to live in lousy areas. I've no idea at this time whether I will be affected by that as well.

I should be able to find a property in a different town for a rent housing benefit will cover, but that will mean losing the support system I've built up over the past few years which in the absence of a formal care package provided by social services is vital. It may also mean having to live in an area which is unsafe.

Vulnerability is a feeling you just have to get used to as a disabled person and one which I ignore for the most part, but all this just highlights to me how incredibly vulnerable I really am. It's not a feeling I like and short of selling my body I don't know what I'm going to do.

Monday, September 08, 2008

Sunday, September 07, 2008

The Secret

I seem to be doing this alot lately, but if you've not already read it can I recommend this post by MsO entitled the secret. It's a courageous post about her experiences of sexual abuse as a child which confirms many of the issues raised in the comments here.

The more we speak out, the less the power secrets can hold.

Saturday, September 06, 2008

Lulu

Lulu came to stay on Thursday when her owners went away. It's both a favour to her owners and a trial run for me and kitty#2 with the hope of getting a spacker cat in mind.

Lulu is going hom
e tomorrow, after which I hope kitty#2 will come out of hiding. Even the prawns my friend Ben bought for her weren't enough to coax her downstairs. She's one spoilt cat, and certainly has a better social life than I do! She'll have to come out of hiding as she needs to go to the vet. Kitty#2 doesn't respond well to stress of any kind and likes to pluck out her fur as a coping mechanism. She's currently half way through giving herself a Brazilian- You'll have to trust me when I say it's not a good look on a cat!
Perhaps she's
smarter than I think and just likes the valium the vet give her? Drug seeking kitteh's, now there's a thought!


Thursday, September 04, 2008

Bureaucratic Brilliance

Such is my love of brown envelopes I was delighted to receive not one, but two from the postman today. I'm always suspicious of manila encased contents and usually I'm right to be.

Today's offerings were from Social Services and the NHS. Now, despite having had my care rationed away in a miraculous curing event by a social worker only interested in moaning about his pay packet and ogling my backside
I had an inkling that more problems were to arise. And no, not like that. He may have been impolite enough to stare at his client's arse but I have manners and so don't look at men's crotches without invitation. Much. Certainly not his. Sandals and beards do nothing for me.

Back to the point. It was the letter I received a few days ago from the Inland Revenue demanding PAYE which tipped me off. That and the very nice, very helpful lady from IR who ranted about social services when I phoned to sort out the tax issue. Her ire was such I realised she had spent more time than she cared to dealing with the mess created by Direct Payments, politicians, social workers.

I lost my care package in May last year when rationing changes in eligibility brought about my miraculous and sudden cure. Yes, that was news to me too. I'd been using the Direct Payments scheme which allows people to purchase their own care rather than being stuck with whichever gawd awful local agency has got it's hands in social services back pockets. Direct Payments basically means that you are an employer, but in practice it works out to having all the responsibility of employing staff without the privileges.

At the time I had returned all the outstanding funds to social services and the file of relevant paperwork. So I was annoyed, although not especially surprised to receive a request for the outstanding funds which also stated they were unable to find the associated paperwork and needed me to advise them of the dates involved so they could trace payment and close the account. The tone of the letter was rather accusatory and without recourse to the laws of grammar or spelling implied I had stolen said monies.

Unusually for social services on this occasion one quick phone call cleared things up. Fortunately I still had the check book for the account and so could provide an accurate date as without that it would've been much more effort to trace the repayment. For me of course. Apparently the 'work experience' student sent the letter out. It's always reassuring to know who has the authority to demand money from individuals is it not?

The second letter was a standard NHS appointment letter. It took me a while to work out what it was for, but at the bottom of the letter I discovered it came from the rheumatology appointments clerk and invited me to see the locum consultant in 10 days time. Ah well, Red did insist politely suggest I needed to see a doctor asap when I informed her of the latest delights my body is performing. Though I still haven't come up with a better way to explain the symptoms I suspect spinal instability to be the root cause of than saying it's like someone shoved an enormous butt plug up my arse whilst I was asleep then woke my up by turning the vibrations on to full power-trust me, you don't want to know how that feels! Good job I've got 10 days to figure out a non butt plug involving explanation....

Wednesday, September 03, 2008

Don't blame the banks, they're hungry too

It seems as though the banks as feeling the effects of the credit crunch. Ah, bless their little cotton socks. After my being daft enough and ill enough to believe the advice given to me by my bank after I lost my job I took on an enormous debt. Which of course is the most sensible course of action when one has neither salary nor welfare benefits.

I'll gloss over the time I spent making repayments. Eating was an unaffordable luxury at that time and funnily enough my memories are not happy ones. Eventually I was given help and advice by a debt management charity and ended up with a £1 a month token repayment. Food was a sudden, but welcome shock to my system.

So this morning the bank phoned me. To advise me of their very special offer. They want to reduce my debt and then write it off. How kind of them. Except they want a one of payment to write the debt off. Of £3600. Isn't that nice? They made sure to ask if I would remortgage to get them the money, or if not I, would friends or family remortgage to provide the £3600. Generous or what? They must be feeling the pinch. Perhaps the bank is hungry now? I'm not too sympathetic, but if they really are starving they can come here and I will feed them cat food. Once a day. After all, that's what people consider as a viable option when they don't have any money to eat.

If I'd had the money I would happily have made the repayments, but then I rather suspect that someone somewhere in the bank knew that pushing offering massive loans to people with no source of income whatsoever might just have the predictable result of those people defaulting on their loans. But, like I said to the nice young man who phoned this morning-if I had any money I'd happily pay £3600 to have the debt written off. Ah well, perhaps the bank will eventually be hungry enough to accept whatever is offered. At that point I will auction off my knickers and give them the profits. About £43.62 I reckon.

Monday, September 01, 2008

Blog Day


I'd never heard of Blog Day, but thanks to Wordsmith for Hire, who's also said embarrassingly lovely things about my blog I have now! It may be a day late, but after some considerable difficulty narrowing it down, in no particular order, here are my 5 blogs;

Uncle Norman
is an ex paratrooper who now works as a security consultant (no, this isn't the Captain) and gives a fascinating insight into his world.

Brainblogger who some might say had a bit of a thing for Jeremy Kyle writes about his experiences of the welfare state and more from the perspective of someone with a traumatic brain injury.

MsOrdinaree
is my fabulous real life friend and fellow bendy girl who writes about life with EDS from the perspective of a full time wheelchair user, wife, mother and (currently ex) nurse

Nelson's Column
is a very funny, if sporadic insight from the owner of Wordsmith For Hire, felix domesticus.

Carnalis because frankly we all need a bit of smut in our lives, and this comes with food too. What more could you want?

Enjoy!









Spack cat!

OMG! It's a lil spack cat! I really, really want one.



And yes, he does walk like me. He's cuter though. Even if it is a close run thing!



via Ouch

Excellent News!

I may not be able to remember what I'm doing now, or er, in fact ever...but I can be reassured I won't get Alzheimer's.
Which is frankly better than the previous option of following family history and dropping dead to prevent it.