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Archives for December 2007

A-tishoo! A-tishoo! We all fall down!

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Giraffe-a-licious | 13:31 UK time, Wednesday, 19 December 2007

Isn’t it miserable to be ill when you’re ill?

I always get particularly narked when I catch one of those evil winter virus-y, bug-gy things. I think it’s pretty fair to say that I am in a constant state of ‘ill’ – true, some days are better than others, but why should I have to deal with the indignity of a snotty nose, sore throat and raised temperature on top of the constant companion that is M.E.? Don’t I have enough to deal with already?

I feel as though our house should have a sign outside at the moment reading: WARNING! UNCLEAN! Various members of the Giraffe-a-licious household are currently playing host to a variety of colds and viruses. There’s always that extra element of tension in the house when you know that you’re sharing it with a particularly nasty stomach bug. I’ve started to view my parents with suspicion, certain that they are about to get that little bit too close and that the invisible enemy will latch onto me. Every day that goes by without symptoms is a small triumph! I joke, but in reality it’s actually quite a genuine and understandable fear. Catching one of these ailments could really set me back in my overall health. It’s exhausting enough for your average, healthy person to experience and recover from these bugs, let alone little old me with my lack of energy at the best of times!

The line between taking sensible precautions and acting on pure paranoia is a fine one but I think I’m doing OK. I’m just about managing to hold off on buying one of those bubble things!

• Visit Ponderings and Ruminations

Home sweet home

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Giraffe-a-licious | 14:07 UK time, Friday, 14 December 2007

My sister and I have had the house to ourselves for the past week. The parental carbon units have been off around the country dropping off Christmas presents to various relatives, and having a bit of a holiday at the same time.

It’s always something of a bittersweet experience for me. On the positive side, it’s great to have more control over my life; to be able to eat when I want and play Singstar at 11 o’clock at night! I actually enjoy being responsible for the household chores. As I do the laundry, put the bins out and experience a short-lived dalliance with dusting, I feel independent. It gives me such a sense of achievement. I begin to think that maybe I can look after myself and that my recurring nightmare of getting chucked into a nursing home at the age of 40 need not come true.

The bitter part comes to the fore at the end of the week; the realisation that if I was required to take on all these responsibilities for more than a few days, I’d be a total wreck. Every little chore becomes more of a trial and my energy levels deplete worryingly quickly. I turn into a hungry, cold, gibbering shell of a Jenny because I haven’t taken the time to eat properly or put the heating on. Gah! The frustration! I never seem to learn from it at all. Every time the opportunity presents itself I throw myself headlong into being a super-house-daughter, with a superhero motto of ‘Do first, think later.’ Catchy.

The strange thing is that it’s very unlike me. I am the queen of logical thinking, even if I do say so myself. I love to plan, make lists and get everything in order. But give me a house to tend and it all goes out of the window! Maybe it just comes from a desperate need to be independent. At 23 most people have been out in the big wide world and lived away from home. Even if they’ve ended up back in the nest after university, at least they know that they can be independent. I guess it all comes down to the ultimate aim of being content; grateful that I have people to help me out and hopeful that one day I won’t need that help.

In the meantime, thank goodness for washing machines and dishwashers. Never mind being exhausted after a week, if it wasn’t for them I’d be a wreck by the time a mere weekend was up.

• Visit Ponderings and Ruminations

Prince Charles's blindie message

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Crippled Monkey | 14:37 UK time, Thursday, 13 December 2007

Seems that Prince Charles has recorded a Christmas message. No, he's not replacing his mother broadcasting to the nation on 25 December - instead, his festive speech is going to a select group of 150 blind people in Ammanford, west Wales, who subsscribe to the local talking newspaper.

This is a story that fills my usually cynical disablified heart with Yuletide warmth. I am planning to write to the Duke of Edinburgh and see if he could possibly do something similar for the nation's population of crippled monkeys. Gotta be worth a try, hasn't it?

'Irresponsible' Facebook mental health quiz

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Crippled Monkey | 13:52 UK time, Thursday, 13 December 2007

Facebook will probably be marked out as one of this year's biggest successes. Just about everyone's on it. Your friends. Your family. Even Ouch and our very own DIsability Bitch couldn't resist its lure.

But now mental health charity Rethink has released a strongly-worded statement criticising an online mental health quiz featured on the social networking site. It's called "What mental disorder do you have?", and it invites users to answer questions to find out if they or their friends have a mental health problem. It even says "C'mon, we know you must have something!"

Oh, but it gets worse. At the end of the quiz, the person is given a 'diagnosis'. People with manic depression are advised to "start living" and "eat lots of fast food and candy", whilst those diagnosed with OCD get the message "Relax! You have OCD and it's annoying everyone you come in contact with!" Nice, eh?

Rethink are calling for the Facebook bosses to remove this particular application immediately.

Adjusting my focus

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Donimo | 11:08 UK time, Tuesday, 11 December 2007

Image by Donimo

A Victorian-era doctor and nurse scrutinize a small child sitting on a bed. The child has a look of consternation on its face. In fancy script in a word balloon, the doctor is saying, “Have you tried not focusing on it so much?”

I’ve had chronic pain for 25 years and have gone to my fair share of pain management clinics. I’ve seen a whole whack of doctors who have strong opinions on how I can best manage my pain. The consensus among the professionals seems to be that I shouldn’t think about it, really. And I should definitely not allow pain to become “the centre of my life.” Now, I can understand that if I go around all day thinking, “Oh, my back, my aching back, my aching back…” then I will notice my back pain more and it will feel worse. But I have to challenge this push to get people to disassociate from their pain and the reality of it in their lives. When you have unrelenting pain, it does become central in your life and facing that truth head-on seems healthier than trying to pretend that your pain is secondary and you are just like everyone else.

I mean, even on a basic level, good luck trying not to think about it when you have 25 different exercises to do throughout the day, certain foods to eat or avoid, a bunch of pills and supplements to take at specific times and twice daily, mandatory pain management meditation. Try not to think about it when you have to coordinate every activity in your day based on your pain or how an activity might impact your pain. Things generally don’t just happen when you have significant pain—there’s a lot of planning and pondering involved. It’s right there in the middle of your day and your night.

I have to ask: why shouldn’t this a central part of who I am? If pain is at the centre, do the doctors think that it will swamp everything else? Are we allowed to have only one thing at the centre? Can’t I be an artist and someone with chronic pain? There are lots of things at the core of who I am. In fact, I find that by allowing my pain—and all that it means in my life—to be acknowledged, I have found more peace and strength and connection than I ever did when I was trying hard to push it to the side.

Oh yes, I tried it their way and it didn’t work. I ended up feeling ashamed when I couldn’t keep thoughts about the pain out of my head or when I couldn’t keep up with others. I couldn’t acknowledge that I had a disability. I was so hell-bent on being “normal” that I wasn’t as fully myself as I could have been. It was exhausting.

I believe it’s healthy to think about a life lived in pain. Focusing on it gives me the strength to open up to people in a deep and authentic way; it helps me connect with others who share my experiences; it helps me honestly acknowledge grief and it allows me to gather resources to help me survive this difficult journey. It makes me stronger. It makes me more in control and aware and complex.

Welcome to pain “central.”

• Visit Chronic Holiday and Body of Work

Just like a pill...

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Giraffe-a-licious | 14:10 UK time, Monday, 10 December 2007

I’m having one of those days where I feel like a walking, talking pharmacy. I’d rattle if you shook me. Tablets, capsules, caplets, big ones, little ones, brightly coloured ones… I’m full of them. My main problem with this drug taking malarkey is that I get so terribly bored with the whole thing and so stop taking them! In a similar way to when I have the same thing for lunch for two weeks and get fed up with toast and marmite, I swallow all these tablets for weeks on end and just get tired of taking them. Unfortunately it has a rather more serious effect on me than just forgoing the old yeast extract. My mum threatened me with a days-of- the-week pill box a while back. That was enough to get me taking them regularly again. For a couple of weeks anyway!

Why can’t something be done to combine all my necessary drugs and supplements into one perfect little pill? Made-to-measure tablets. I’m sure there’s a market for it. Scientists – get up off your posteriors and start work!

Worryingly, I’m not the greatest when it comes to reading labels either. Earlier this year the doc gave me some lovely new painkillers (which incidentally turned me into something of a wreck for the first few days, much to the amusement of my beloved family!). I took them as you would most tablets; stuck them on the back of my tongue, took a good glug of water and off they went down my pharynx (ooh check me and my medical terminology out!) to do their analgesic work. I did notice that the taste was remarkably strong, but a lot of tablets do have that nasty tang. It was only four days later that my mum noticed the label indicating that these particular ones were to be dissolved in water before consumption. No wonder they’d tasted bad, they’d been dissolving on my tongue! Oops. Well if they will go and use a word like ‘dispersible’! What’s wrong with soluble or even dissolvable? Dispersing is what you do to a rowdy crowd! I told my mum that I’d read the label properly next time. She didn’t seem to believe me. Can’t think why.

• Visit Ponderings and Ruminations

Smile Now

Wheelchair Dancer Wheelchair Dancer | 22:15 UK time, Saturday, 8 December 2007

Hey ... back again from touring. Sorry, it's been so long.

We had a really successful run. 6 cities down ... 6 more to go. It's been awesome -- though I have to ask Iowa in February and Miami in August? Who did we offend? Honestly, we're sorry... really..

The highlights included a trip to a paralympic training facility (bringing to 3, the number of Murderball stars I've met... name drop, schmooze). Nothing like being in a fully accessible space, a place where disability is so normal that it's the apparently AB types that cause you to look more than once! giggle. The lowlights included travel snafus and oh-so-bad food. I mean, who on earth orders pizza, pasta, and meatballs as pre-performance food for a vegetarian, vegan dance company? And in one instance, the whole thing was so screwed up that we had a whole plane basically to ourselves!!

Anyway. The thing that sticks most in my mind for today are the reviews and the comments people made about us (including to our faces). Why are we (and other disabled people) always seen happy-smiling-bringing-light-to-the-world -types? I know my colleagues at West Coast. And I'd say we were a bunch of miserable whiners. It's too cold in here, too hot in here. The hotel this... the food that ... the weather ... the car.... the stage floor, the theater, the lights, the mirrors,the food, omg the food ... We are definitely grouchy whingebags -- and if you spent any time with us, you'd know that. But all the outer world can see is our happy little cripple faces (and oh-so-inspiring-non-disabled faces). It's so nice that you can be here and do this. It's so wonderful. *You* are so wonderful. Gah. Snort.

It's not just us, though. The New York Times recently ran a piece on the guy in the tv show, Las Vegas. Sho' nuff... he's a light-bringing chap, too. I know it's the whole infantilism, self-reducing thing. But honestly, Ouch's Disability Bitch aside, why don't/can't the grouchy, bitchy, whiny, moany, scary, swearing, cussin' crips ever reach the light of day?

• Visit the decidedly sour-faced, potty-mouthed Wheelchair Dancer

Chronically yours

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Donimo | 04:58 UK time, Saturday, 8 December 2007

This is my first post as a guest blogger and I would like to introduce myself:

I’m a visual artist with severe, full-body chronic pain. I put these two things right in the first sentence because each is a very central part of me and each greatly influences how I respond to the world around me. In my daily life, I always look for what is artful in small things and in grand. Seeking striking images and beauty has always given me joy and strength. Career opportunities and physical abilities have dropped away over the years, but my artist’s eye remains. When my pain interferes in the creation of my own work, I still have my deep appreciation for the richness that others bring to the world with their art. I find the Disability Arts movement particularly thrilling with all of its invention and daring.

27 years of chronic pain has changed my body and influenced who I am. With pain as my guide, I have to respond to the world in terms of how well I can negotiate it. I chose my paths and my activities based on how much energy I have, how steep the climb, how long the walk and how I will be impacted later. Pain muddles my head and often makes thinking so difficult that at times I am silent though I would love to speak. On the bright side, being in pain this long has sensitized me to other’s struggles and I’m more compassionate and patient because of it. It shadows my every move. The pain is part of me as surely as the art.

Obviously, there are other things in my life besides art and my aching body. I live in Vancouver, a beautiful city on the west coast of Canada, with my partner of 9 years, our orange cat and wee Papillon dog. We all get along quite marvelously (with the help of a bit of counseling, the occasional taking of space and excellent cat nip). I’m rather urban and enjoy city life with its variety and buzz, but also seek out forests and fresh air.

I’ve been doing my two blogs since July ’07. One is a humorous look at the weird things people say to those who have a chronic illness and the other focuses on my art and my experience with chronic pain. Blogging has really given me a good creative shove and has connected me with people all over the planet whose experiences are really similar to mine. It has given me some distance from being overwhelmed by all the things I “should do” for my pain and enabled me to look at just how absurd it all is sometimes. I’ve found it extremely rewarding to give people a laugh or two. Blogging expands my world.

With my Ouch! blogging, I’ll write about things like my hilarious adventures with chronic illness and its fans; doctors with Arrogant Specialist Syndrome (ASS for short); a gimp’s life in the slow lane in a fast-paced city; weird medical tests and Disability Culture. I’m going to include images with my writing as well. I’m really pleased to add my voice to the amazing choir of crips here on Ouch!

• Visit Chronic Holiday and
Body of Work

NHS on fire!

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Giraffe-a-licious | 13:30 UK time, Thursday, 6 December 2007

I do love the NHS. Honest, I do. I’m well aware that we Brits are fortunate to have a healthcare system that provides for us without the necessity of medical insurance. Of course, strictly speaking it isn’t free (National Insurance contributions and all that) but it is something of a lifeline to those of us who are unable to work and so cannot pay for insurance or treatment. I’ve seen enough episodes of ER to know that I’d far rather live with the dodgy NHS than with the American system.

However sometimes the inefficiency of it all just drives you mad. I’ve had thyroid problems on and off over the years and have an annual appointment (allegedly with the consultant, although it’s almost always one of his lackeys… er sorry… registrars) for a brief check-up. The last time I saw someone was October 2006, at which I was given my next appointment date – December 2007. Last week I received a letter reminding me about the appointment. All fine and dandy so far. Yesterday I received another letter. This time I was told that the clinic had been cancelled and I was given a new appointment date – for August 2008! My appointment had been postponed by a whole 8 months! I was not a happy bunny, given that I’ve been concerned with some of my recent blood test results and had in any case decided that should the registrar not take me seriously, I would stage a sit-in until I saw the head honcho.

So I got on the old dog-and-bone and got passed around various receptionists and secretaries until I was finally able to get a cancellation appointment next month. It all turned out OK in the end but surely an 8 month delay cannot be completely necessary. And to only let me know the week before hand? I got the impression that the consultant is either on holiday or away at a conference. If that’s the case then surely the clinic must have known about it before now!

I was provided with further evidence of the - almost comic if it wasn’t so worrying - ineptitude of the NHS earlier in the week. My sister and I were at the hospital doing our weekly radio show. We were just coming to the end of it and we hear the oh-so-welcome sound of the fire alarm. We were very responsible and left everything as it was and headed outside. No-one seemed to have a clue what was going on and if they did then they weren’t going to let us in on it! Three fire engines turned up. From what we could overhear it appeared that there was no fire but that no-one could switch the alarm off. It was freezing cold and my legs were not happy about being required for such a period of time. Eventually we took matters into our own hands and asked a passing security guard if we could go inside. “Yes,” he said. Well thanks very much for letting us know. Goodness knows how long we’d have been out there if we hadn’t piped up. Heading back inside it became apparent that the role of the three fire-engines full of firemen (none of them young and cute by the way – very disappointing!) was to break down a door to get into the office where the fire alarm could be shut off. Why the blinking heck did no-one have a key to that office? What’s more I bet they don’t learn anything from the whole debacle. A year or so down the line chances are that those firemen will be back to hack the replacement door down.

I do love the NHS. Honest, I do.

•Visit Ponderings and Ruminations

Drum roll please...

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Giraffe-a-licious | 14:25 UK time, Tuesday, 4 December 2007

I apologise for the somewhat egotistical title to this, my first Ouch blog, but I was trying to think of a new and exciting way of introducing myself. Quite obviously I failed. Thus the drum roll.

How to start? Well my profile should give you some idea of who you're dealing with. I do my best to be a fairly happy go lucky kind of gal most of the time but have a dark side that likes to reveal itself at inopportune moments; usually in the form of cynical rants against the state of the world today.

I started blogging back in August. I'm not sure if anyone actually reads it , butI'm quite used to that. I've been doing a hospital radio show for years and I'm positive that 90% of the time there isn't anyone listening. On the plus side it means that if I make any bungles then there's no-one around to hear them!

As my profile says, I've had M.E. for almost 10 years. Last year was a good health year and I even began entertaining the possibility of a part-time job in the not too distant future. Annoyingly (well, not annoyingly... annoyingly doesn't even begin to describe the frustration) I had a severe relapse in March of this year which put paid to any such ideas. So I'm currently forcing myself to be content with little bits and pieces of volunteering and writing. It actually works sometimes!

No doubt Ouch will soon be privy to my, in-some-quarters legendary, rants on all things benefit forms related. I can feel the atmosphere of anticipation building already!

•Visit Ponderings and Ruminations

Rain is so inaccessible!

Jemma Brown | 14:47 UK time, Saturday, 1 December 2007

It’s true it really is! See today has highlighted all the issues I have with the wet stuff, its been raining pretty much all day; ranging from thin drizzle that’s slightly pathetic but still manages to soak you right through, to really heavy fat rain that’s just pelts down on you.

Lets start with the blatantly obvious, everything is wet therefore slippery for someone with a condition that affects there balance the chances of falling over are very high. What’s worse still is that if you fall over in the rain not only do you get the standard ‘ouch that hurt’ (or expletive) but you also get the ‘great now I’m soaking wet’ effect. There are also more outside risks; manhole covers are very slippery when wet.
The thing is the slippery-ness does not just apply to being outside on pavements for example, when you go inside everything’s slippy too, or your footwear is wet and slippy, thus again increasing the risk of falling over in the dry!

Then there is the whole rain on glasses issue, not a good mix especially if you are already partially sighted. furthermore when you get out of the wet the glasses are not only covered in rain but then steam up.

In desperate attempts not to get soaked through one chooses to wear a sufficiently waterproof hooded coat. In the attempts to stay relatively dry this causes another issue, when wearing a hood it is very difficult to hear traffic and it significantly reduces the already somewhat sketchy field of vision.

Then there’s the waterproof footwear issue, the problems with this particular coping strategy start early on while trying to purchase suitable walking boots. I will be the first to say I have VERY odd feet; this is due to my disability. My feet are very flat and very wide and for a woman very big (at least a UK size 9) add to that the fact that I have to wear supportive orthosoles inside my footwear of choice. It all makes finding walking boots very tricky!

As a long cane user there is also the ‘ewww my cane is soaking wet I don’t want to put that inside my bag now’ reaction when you reach your chosen destination. Using a long cane in the rain also has other issues, a wet hand usually equals a cold hand, other people would perhaps wear gloves in such circumstances but I myself find that wearing gloves reduces the tactile feedback of my cane to much, so I have to put up with a numb blue hand.

As a future guide dog owner there is also the smelly wet dog issue and the necessary towels required to dry said disgusting but still loved small pooch. It is also a fact of life that a dog will run in to the muddiest possible puddle when off the lead but cannot stand getting wet on the lead so rain usually equals a sulking miserable dog!

Then there are even more issues when it finally stops raining, for example the sun comes out. I absolutely hate it when it has been raining and the sun comes out, I can’t see a thing! People that know me are usually completely shocked by my sudden blindness and I am frustrated when it takes me an eternity to travel what should be a 2 minute walk from the bus stop into college and popping up every lamppost on the way.

See rain, its disabling and it does not make reasonable adjustments to include disabled people who can’t drive, it makes our life harder.

It’s completely inaccessible and I am seriously considering taking up a case under the DDA!

• Visit Diary of a Monkey

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