Withdrawl continues...

1/26/2010 06:22:00 pm BenefitScroungingScum 2 Comments

I went to see my GP this afternoon. I've still not heard anything from Choose and Book so it's likely to be a few more weeks before I even know when the pain clinic appointment is. Its important for my GP to know what the situation is, particularly as they do the repeat prescriptions, something that's probably difficult to do if you don't know what dosage of a drug your patient is taking!

My GP was running late, there were a few people in the waiting room but only one person was moaning about why the doctors were running so far behind when there wasn't a crowded waiting room. When asked my opinion I suggested that was
typical for good doctors who spend the amount of time needed with their patients rather than sticking to whatever random number of minutes the latest government dictat has informed them patient care should last. I should've saved my breath as the woman immediately went back to saying it wasn't good enough, especially when not many people were waiting. What the two have to do with each other I don't know, but it took all I had not to start into a rant about people in the UK having no idea how lucky we are to have universal health care. In some countries people will walk for days and days just to see a doctor, whilst many in the UK can't manage a 10 minute wait in a warm waiting room without moaning.

When I saw my GP she was unimpressed to hear that I didn't yet have a date for the pain clinic. She told me to give it a couple more weeks and if it still hasn't come through then the practice will start chasing it up on my behalf. Last night I dropped the Oxycontin by a further 10mg meaning I'm now taking a 20mg dose three times a day. Even a drop of 10mg is noticeable so the plan is to continue for another two or three weeks at 20mg three times a day, then to drop the dose by another 10mg, initially just every other day to try and limit the more unpleasant withdrawl symptoms which seem to really kick in around that point.

I'm still eating wheat, a sign of just how miserable the withdrawl symptoms are. Usually eating even small amounts of wheat or gluten is akin to pouring concrete down my throat...which is why I decided to give it a try! It's not without it's problems or complicating factors but anything which limits the 5am poop or puke wake up call is a good thing. Especially if it involves pizza and biscuits!


Bog Off-Exhibit 20-Airports get it right!

1/25/2010 05:28:00 pm BenefitScroungingScum 1 Comments

This is one of the accessible toilets in Manchester Airport, Terminal 3 to be precise. I'm an infrequent traveler, but in my limited experience, airports are one of the scant few places consistently managing to achieve high standards for disabled toilet facilities.

The standard of cleanliness in this particular toilet is high, and it has a really pleasant smell to it, similar to Cool Water aftershave, but without the obnoxious chemical tang and choking quality of most artificial scents.

The dark blue tiling is very easy on the eye, with none of the painful glare so common to tiled, white, brightly lit toilets. It also means the white of the furniture and grab rails stands out very clearly, catering for those with limited vision in a way most accessible bathroom facilities do not.

The help cord was a little harder to see as the red does not stand out so clearly against the dark blue, but it did at least reach down to the floor.

One of the nice features of this disabled toilet is the privacy curtain it's possible to draw around the actual toilet, particularly important in disabled toilets as unlike standard public toilets, disabled toilets usually open straight onto a public area. Having a privacy curtain means that a personal assistant can step outside the door without exposing any of the toilet related activities to the outer world!

I can't tell from the photos if this is one of the toilets in Manchester Airport which also has a shower feature. Unlike Copenhagen Airport, I've yet to spot a disabled toilet in Manchester A
irport which provides changing table facilities for disabled adults.

There are some more unusual features to this disabled toilet, such as the facility to safely dispose of used needles, the yellow bin at my head height in the photo. It's great to see this kind of facility, but it's sited too high for a wheelchair user to be able to reach.

Last, but by no means least...it's wonderful not to have to worry about reapplying my lip gloss as there is a full length mirror in this disabled toilet. Well done to Manchester Airport!


HTLGN...with a difference-the verdict

1/20/2010 04:20:00 pm BenefitScroungingScum 6 Comments

8pm last night saw me eagerly awaiting the start of How to look good naked...with a difference. It's a show I've previously watched, but not for more than a few episodes, because frankly it gets boring very quickly. Women with low self esteem, tall, short, fat, thin, old, young...it all blurs into one not very memorable blur after you've seen enough of them weep on Gok's sympathetic shoulder then emerge triumphant and nude at the end. Even with my lack of short term memory it's too reminiscent of being a goldfish, so if the series hadn't been featuring a disabled woman it wouldn't have occurred to me to watch it.

I was still unsure what I thought throughout last night's show. The whole concept of disability as 'a difference' requiring it's own series unsettled me. That may have been why I found myself predisposed to dislike the show, but it didn't stop me enjoying it.

There were a few cringe worthy moments, particularly in the scenes filmed at the university, but overall Gok and his team have alot to be proud of. Although Occupational Therapists get very upset about such things, the scenes with Gok sitting on Tracy's knee whilst she self propelled the wheelchair were the closest to the reality of the way disabled people and their friends treat wheelchairs I've ever seen. The fashion advice tailored specifically to the needs of a full time wheelchair user with minor, inexpensive alterations to make jeans easy to put on, or sit comfortably in were excellent, as was the pimped wheelchair they gave Tracy before the final catwalk show. In fact the wheelchair was so cool I might have to apply to the series myself!

It was fantastic to see so many women with disabilities on a mainstream fashion show on prime time TV. That they still all fitted the ideal of slim and sexy could be viewed as disappointing but in a show particularly aiming to promote the idea of disabled people in fashion seems to me a stroke of genuis. After watching the show I was still left feeling that disability should not be considered to require it's own, different series when the concept is to bring women to a point of acceptance of their bodies, no matter how they look. In the future I want to see disabled women as part of the overall How to Look Good Naked series, but for a first step this show is a great stride forwards.


How to look good naked...with a difference

1/19/2010 03:29:00 pm BenefitScroungingScum 11 Comments

Series 6 of Gok Wan's 'How to look good naked...with a difference' starts at 8pm tonight on Channel 4. The difference being, you guessed it, it's all about disabled women.

I was actually contacted by several people to suggest I apply when the series first advertised for disabled women. As naked is one of the few states I'm completely confident in I felt that I probably wouldn't be the best person to apply, but rest assured when 'How to look confident in clothes as an impossibly big breasted shortarse' advertises for applicants I'll be there. Until such time I'll continue to worship Dolly Parton and Babs Windsor from a distance whilst ignoring their fashion 'sense'.

I'm not sure what I think about 'How to look good naked....with a difference'. Part of me thinks it's absolutely fantastic, building on the success of shows such as Britain's Missing Top Model it is great to see disabled women being featured more on television. Another part wonders, if this is already a series about teaching women to love their bodies the way they are, then why the need for an entire 'special' series featuring disabled women, shouldn't they simply be included as women who've had mastectomies have previously been.

I'm unusual in that I have gained most of my body confidence through becoming disabled. Like so many teenage girls I was eaten up with hatred and disgust for my body, which being bullied for my size and shape undoubtedly amplified. For many years I swung between hiding my shape under big baggy clothes and displaying it with tightly fitted clothes. It seemed not to matter which I did, I'd get equal amounts of abuse, as frequently from the people around me as strangers. I'm not sure what would have happened had I not started to become disabled in my early 20's.

Something changed in me the first time I needed assistance with personal care. I was working as a camp counselor at the time, living in the woods where fashion or appearance were so far down the list of priorities I wore pyjama bottoms and hiking boots until both fell apart. Whilst happy to be scuzzily dirty in an environment where we cooked over open fires and spent most of our days in and out of a lake, going to the doctor demanded a higher standard. Especially as my doctor was seriously, seriously sexy. And had mistaken me for a small child the first time he met me.

If he was to remain my surgeon I needed to get clean, which is not easy to do when you've just dislocated your shoulder and are forbidden from moving it around much. It's also a very embarrassing situation to be in. Not just for the cleanee, but often for the cleaner too. There was a distinct lack of volunteers to assist. Eventually the 16 year old girl employed to do the laundry offered to help, she had previously worked in an elderly care home and was used to assisting people with personal care. I've never forgotten her kindness helping me, she was so at ease with my nudity in a non threatening, non sexual way that I couldn't help be at ease myself. Over the following years I spent so much time having to strip to my bra for various medical professionals that I became used to being semi clad in a room full of strangers, which was later cemented by working as a glamour model.

That's also the secret to the success of 'How to look good naked'. Someone who is completely comfortable with nudity offering a sympathetic and supportive ear to enable and support women to address their body issues. For disabled women there may be other, more specific concerns such as suitable clothing for a wheelchair user, or how to be comfortable naked with drains or bags, but ultimately it's all about helping women become happy in their own skin. My hope is that next time there won't need to be a special, different series, just one which features all women disabled or not.


2010 not 1910

1/12/2010 03:35:00 pm BenefitScroungingScum 4 Comments

As the snow slowly melts away, my sanity slips back into place. It's at best tenuous but it is at least a start. Yesterday I made it outside, only for a few minutes, and not without a few scary near misses but the beauty of the frozen beach soothed my soul. Today an hour with girlfriends was calming despite the caffeine and emotional angst of the topics of conversation.

When I saw LC just before Xmas I was not doing well physically. I'd managed to get the Oxycontin down to 10mg td* but it was at great cost to both me and my blood pressure, so I was instructed to increase the Oxycontin back up whilst waiting for an urgent referral to the pain management consultant. LC, being an experienced consultant, wise to the bureaucratically bound ways of the NHS, actually phoned the pain management consultant during the appointment and dictated the letter there and then as well as ensuring the dictation tape went to the right place. As he said, otherwise it could be weeks before the letter was even typed up.

Although politicians seem determined to ignore doctors and nurses, they do tend to know a thing or two about where the real problems lie within the NHS.

So, I duly increased the Oxycontin and hoped it would absorb. I also unearthed some very out of date Zofran in my medication box and took them for a few days. Fortunately they seemed to do the trick and gave me enough of a break from the vomiting to eat some Christmas dinner. Over the holiday period I increased the Oxycontin up to 20mg td, and although the withdrawal symptoms didn't go they slowed down to a point allowing me to gradually get more rest. The cold weather caused such a massive increase in pain that I increased the nighttime dosage by another 10mg to where it is now at 20mg, 20mg, 30mg. With all the disruption caused by the weather I knew the referral would be delayed so waited until this week to start chasing it up.

The pain clinic told me they had no trace of any referral. The very helpful secretary I managed to speak to in rheumatology, which is based at a different hospital site to the pain clinic, initially advised me that the referral was yet to be typed and would be at least another week until it was. A further phone call unearthed the referral, which had been typed and posted before the christmas break. Yet another phone call, equipped with this knowledge, finally managed to unearth the referral sitting on the consultant's desk, and that it'll be at least a week before it is looked at and the consultant decides whether or not he'll see me.**

Politicians are constantly harping on about the value of the NHS and how determined they are to dismantle it and sell the parts to their money grubbing matessave it. Literally billions of pounds have been thrown at the doomed NHS IT project. It's 2010. 2010, not 1910. This one referral has taken 3 weeks to be typed, posted, received, opened and delivered to the right desk in a different hospital which is part of the same overall trust. Billions of pounds on IT, yet no decent system of email. That's before the consultant makes a decision to see the patient, at which point the referral goes back into the system, gets (I assume) posted to the Choose and Book team, who will then contact the patient to make an appointment. All this is for a referral classed as urgent.

Aside from the billions wasted on not fit for purpose IT, there are huge knock on costs to the welfare state while patients waiting for the bureaucracy to follow them around the system are forced to take time off work and claim benefits.

*td-3 times a day
**This bit strikes fear into my heart due to all the problems I had prior to being diagnosed.


1/10/2010 04:36:00 pm BenefitScroungingScum 6 Comments

Again my words are hiding, until I close my eyes, lose myself in the music and suddenly they arrive, tumbling over each other in their frantic race to the page, hindered by bendily uncooperative cold fingers.

Achelois sees this as a bold thing to do, a brave unveiling of self. She might be right, she's a wise woman, but for me it comes from a weaker place. I write what I can't say. No matter how close the friend, how sympathetic the ear, something within me chokes every time. Yet here, protected by a screen difficult feelings are easy to articulate.

The weeping continues. It's becoming very annoying. And boring. All these weeks of early morning puking and pooping have exhausted me. Whilst my Oxycontin intake increased slightly after seeing the LC it's just slowed the withdrawal symptoms, not removed them. On top of bone deep pain and fatigue lies a weighty blanket of sadness. Fortunately there is still a part of me which knows, were it not for this withdrawal process, I would be upset but not so completely devastated by events the way I currently am.

There is no shortage of food in my flat, just a shortage of interest in eating it coupled with a lack of spoons to make it. That concern has been removed again today by my neighbour delivering a plate of roast dinner to my door. My prescription medication has been collected by Ben, who will also do any shopping I need, as will the neighbours. I'm just particularly bad at either asking for or accepting help. Unfortunately my very dedicated and hard working carer worked herself into exhaustion in the run up to Christmas and is still really poorly. Which is why I've insisted that I'm absolutely fine every time she's asked, as she is far too unwell to be looking after anyone but herself.

My words have gone again. So perhaps this is all I'm supposed to say for today. Apart from to thank you for all your comments and support, they always help.


January Joltings

1/09/2010 06:32:00 pm BenefitScroungingScum 6 Comments

So, um, it's cold. But you knew that anyway. Pointless mentioning it it really. Except, it was words on a screen and I seem to be struggling to find them at the moment. Possibly all the words are hiding somewhere with my marbles, waiting until the first green shoots of spring before revealing themselves to me.

That, or a combination of things have finally driven me over the edge. Jury's out on that one, but I'll get back to you if I fall over any conclusive proof either way.

Mary has written an eminently sensible and informative post about the effect of the cold weather on impoverished cripples. You should really read it, it's full of interesting and useful facts about the benefits situation. A not so healthy winter of hypothermia some years back forever altered my perspective on heating costs. They aren't worth dying for. Not ever. After all, what can the utility companies do, sue me for the money? Good luck to them if they try, being assetless has its advantages. Unlike being cold, which is an all round shit state of affairs. Living so close to the beach is wonderful in summer, but in winter not so much. Fortunately my lovely landlord installed a new boiler in the run up to Christmas so I've thought it best to show my appreciation by not turning it off. At all.

My very nice neighbour delivered a hot meal to me this evening. This is a good job because for some self destructive reason I can't quite remember I decided to get into the left over bread from the Best Man's visit. I have eaten lots of crappy sliced white bread and very little else since then. Gluten is not my friend, no matter how many times I convince myself it does my body no harm at all and decide to reintroduce it
binge on doughnuts. Fortunately this time there have been no doughnuts but that is only because the ice prevents me from leaving the flat at all. The schools may be closed but it'll renew your faith in capitalism to hear the pot dealers are open for business as usual. Mine came round to take me food shopping too. That was a few days ago and my joints are still seriously pissed off at me about it.

I moved into the flat a year ago this weekend. I'm not sure where the year has gone. Actually I'm not sure what happened to the last 1015 years now I think about it. I had some ludicrous notion that the next 10 years had to be better, because really, it's definitely my turn. It was probably that which tempted fate enough to make me start sobbing by lunchtime on New Year's Day, and carry on fairly steadily ever since. Well, that, the gluten, the oxycontin withdrawl, and cabin fever. Roll on spring!


Bendy Body Bits!

1/08/2010 02:27:00 pm BenefitScroungingScum 7 Comments

This impressive example of a hypermobile shoulder actually belongs to The Best Man, though the poor quality photography skills are all down to yours truly.

Proving yet again that either Ehlers Danlos Syndromes and Hypermobility Syndromes are either not the medical zebras they are alleged to be, or that I just have some weird bendy seeker gene.


Bog Off-The Meeja Luvvy exhibit

1/07/2010 05:06:00 pm BenefitScroungingScum 3 Comments

Thanks to a secret source at The Guardian, Benefit Scrounging Scum is delighted to bring you Bog Off!-The Meeja Luvvy Exhibit.

'It was a bit of a shock when I first opened the door-there were paper towels, toilet paper and other debris all over the floor. It was obvious no-one had been in to clean for a while and it was very off putting, not to mention potentially dangerous for anyone wobbly on their feet, or with a visual impairment.

The alarm cord was looped well above the handrail, so anyone who fell on the floor would have been unable to reach to call for assistance.

The positive points were that despite all the mess, both the toilet and handbasin were clean and it didn't smell in there. There was also a massive mirror, suitable for people of any heights, whether chair users or not.

Although the space was just about adequate for a wheelchair user, the soap dispenser and hot air dryers were probably slightly too high for anyone using a chair.

Overall I'd g
ive it a 7/10, but had it not been so messy and the alarm cord not looped up it would have merited an 8.5/10. The building is huge so it's almost certain there are other disabled toilets. Let's hope the one I used, which was on the main newsroom floor was an aberration.'

Perhaps someone at The Guardian will be able to let BSS know if that's the case?