DizzyBlog

mmmm… twisted around one day last week and heard and felt a click. Then came the pain… I’m not surprised that back pain is a major source of incapacity, but what is worse, I’ve found that my back is connected to so many other bits of me - arms, shoulders, neck and feet - that it’s making it’s presence felt more than I would like it to. Back pain hurts a lot. Still, at least I’m able to feel pain in my spine, so not all is bad.

You may have gathered that I’m not put together like most humans… It just gives my friends even more evidence that I’m an alien!!! I have a severe curvature of the spine, giving me a rather interesting 18th century drunken pirate’s gait, even though I’m sober (honest guv - well most of the time anyway!). This means that most osteopathic or chiropractic routes seem to be out of my reach as they will do more damage than good and definitely not the one that allows someone to walk up and down your spine - is that called Shiatsu?

One thing though, as I can bend down even less than usual, I seem to be becoming very unlucky. I dropped a number of knives on the floor and shouldn’t pick them up because its bad luck, but if I don’t I’m going to cut myself, or the cat is going to cut her paws… etc. etc. Maybe the backbone’s connected to just anxiety after all

I heard yesterday that my favourite painting, Monet’s Water Lily Pond, was sold at auction for £41 million, which I think works out at around $80 million at the current exchange rate. Perhaps art really is recession-proof! There were certainly 11 people bidding who felt so…

Noteworthy from my perspective is the fact that Monet painted this work in 1919 when his sight was seriously impaired by cataracts. When he had them removed in 1921 and looked at the work again, he didn’t like it.

I am certainly grateful, as a fan of this soft-focussed piece of art, that he didn’t destroy it. Is it possible to say that Claude Monet’s Impressionism was a consequence of his visual disabilities? Am I, what I do, how I react, a consequence of my multiple disabilities too? That is a great philosophical conundrum, and I’d love to know what the answer is. It is more than likely that my life would have been different if I didn’t have a disability, but whether for good or ill, who can tell - maybe I’ll give it more thought and come back to it another time.

I’ve been having an interesting experience this week putting out the rubbish. Swansea Council has been encouraging its residents to recycle, and has made further improvements by allowing the recycling of cardboard recently. So there I am, filling recycling bags with a mountain of cat food boxes (it’s only now that I realise just how much my cat eats!) feeling good about being green. My small contribution to solving a very big problem.

Moving to another recycling theme, I know there has been some pressure in the medical community for the adoption of the concept of “implied consent” for the donation of organs after death. After all, there is a worldwide shortage of donors and no prospect of improvement in the situation. A recent UK poll showed a large majority of people in favour of organ donation. However, there is a relatively small proportion of the population that carry the card showing active consent to the donation of organs after death. It is hoped that implied consent will make more organs available for transplantation.

I certainly agree with the concept, though over 30 years of Type 1 Diabetes has made most of my organs useless for donation. As one in three diabetics will develop kidney disease, as a group we are very grateful recipients of the process, but are unable to reciprocate because of the internal damage this disease causes to our own bodies. There was an item on ABC news in the USA recently adding to the gloom. It is common knowledge that our condition can damage our sight, but now there is evidence that diabetics could experience twice the level of hearing loss of the general population. Hey, ho, …. fight the good fight!

On a much more positive note, the work on stem cells promises much for chronic conditions like diabetes. These cells will eventually, I hope, allow the body to regenerate. This, along with other promising therapies, such as a Patient’s Recovery from Terminal Skin Cancer reported today (thanks to the Daily Telegraph), offer something for most of us.

Unfortunately, on a personal note, I wish to mark the imminent passing of a wonderful human being from this world to the next. Such regenerative therapies are coming too late to save her from secondary cancer, but she definitely fought the good fight.

I, and my shopping, were walking home after getting off the bus today and one of the neighbourhood dogs started barking at me. The dog wasn’t a problem as he was on a lead, and wasn’t a massively mean brute either! His owner said “he is only barking at you because you are different, but you do OK…”

At that current moment in time, I definitely WAS different, forging purposefully up hill with a huge bag of shopping on my left shoulder and my walking stick, aiding my ascent, in my right hand. Much though I love Swansea, it does have an awful lot of hills  Hey, ho, climb every mountain and all that jazz….

I agree with the comments made last year in the Ouch Podcast that disabled people are treated very well on  the street in Wales. Certainly, just because I walk funnily, I don’t get the abuse I used to when in England. This has definitely improved my confidence and it means I feel able to go out and about more than I ever did before. I wonder if its a cultural thing - the Welsh siding with the underdog - perhaps because they too have not been treated well throughout history! Strange fact that it is still perfectly legal to kill a Welshman in Shrewsbury with an arrow on the first Wednesday of every month. Not sure that I’ve got that completely right with timescales and things, but the principle still exists!

When I finally passed my car on the way to my gate I thought that these trips to the supermarket on the bus won’t be for long. My driving test, though delayed through my compromised immune system (by the way, it wasn’t a cold but a roaring chest infection) will happen soon. I hope to be driving before the end of the year, so won’t be having so many of these interesting shopping excursions… HURRAH and sadness… I wonder why that is…. and perhaps I should help the dog out with some disability awareness training to relieve his anxiety!

Government has published today evidence of an increase in the number of pensioners and children living in poverty in the UK. The measure used is based on a level of less than 60% of average income. Rising utility, fuel and food prices affect us all, as everybody has to eat and keep warm. 

However, there is a major omission here. The media and Government again haven’t mentioned the Disabled in the poverty category, even though many of us, especially those on welfare benefits, also meet the criteria for inclusion in the poverty measure. The Leonard Cheshire Charity produced a report in January this year on the subject, which doesn’t seem to have warranted any comment. I was wondering why this is. Yes, there are often stories of misuse of Blue Badges and benefit fraud amongst those with a disability, but no publicity about the choices between essentials such as heating and food that we disabled also have to make along with pensioners and families on very low incomes.

The Government seems to have adopted a “let’s sweep this under the carpet” attitude because it seems enough to pay lip service to disability equality without committing resources to solving the problem. I know, with the credit crunch, money is tight, but at least acknowledge our poverty and vulnerability too and not pretend we don’t exist - we have enough of that in our daily lives despite the Disability Discrimination Act and the Equalities Commission…

Here I am suffering from the most irritating of sicknesses - the common cold - AAAACCHHOOOO!!!! Nose that looks radioactive red, 3 boxes of tissues down and still going, wondering if this is going to be a record…  Because I’m diabetic and immunocompromised, I’m not even allowed to get symptom relief products - O woe is me!!! My immune system gives up straight away and my body gives the virus free production space. My work mates used to dread giving me a virus because I would give it back to them as a much improved and destructive version with more punch. Maybe I should lend myself out as a biological warfare laboratory!

Still, let’s be positive here, I’ve had the pneumonia jab, so this virus can only do a limited amount of mischief.

Strange isn’t it, that medical science is making great strides in many illnesses, but still can’t crack this one. Research has been going on for years, but this little virus has managed to evade them all. Its true it isn’t life threatening, but it is very, very irritating!!!

Luckily, I heard yesterday on the news that not all viruses are faring that well. 3 million people with AIDS and middle to low incomes were proved to have improved life chances with antiretroviral drugs. AIDS is a life threatening virus and I am relieved that this one isn’t prospering… 

This soliloquy from Shakespeare’s As You Like It has special resonance for me today. I came across author Terry Pratchett, much admired for his Discworld novels on the radio. He has spoken recently of his diagnosis with Alzheimer’s disease, a degenerative brain condition usually affecting older people. I have a long standing interest in this area which started in 1990 when I was studying to be a Social Worker and worked in a placement at a very progressive Elderly Person’s Home in Bransholme, Hull. Moreover, on a personal note, as a Type 1 Diabetic of 32 years now, I have a higher than average risk of developing the condition myself.

The programme gave coverage to Pratchett’s discussion with a number of others with the disease, and a carer, who were discussing the personal impact of the condition. I feel I must congratulate BBC Radio Five Live for the piece, as the nature of the dementia means that the limited media exposure granted before could only be usually given to the carers rather than the victims themselves. The contributors discussed the challenges, problems and positives they face and the programme was very moving. I would encourage everyone to listen to the discussion. Terry Pratchett and Alzheimer’s

It seems that much of the improvement, or perhaps more accurately, the slowing of the progress of the condition, belongs to drugs such as Aricept (donepezil). There has been much controversy in the UK that this medicine has been denied to many patients with early onset Alzheimer’s on grounds of cost. I think, as a disabled person, very optimistically of the change from the Medical Model of Disability to the Social Model. Society can, in many ways, now treat us with more equality. However, in this 21st century, I believe there is a rise in something that I call the Economic Model of Disability. Here many disabled individuals are denied improvement in their conditions through costs of treatment and/or poverty because holders of resources see situations entirely through Cost/Benefit Analysis spectacles!

Oscar Pistorius, athlete with a disability rather than disabled athlete, will compete against athletes without a disability in the Beijing Olympics. Lets hope this will help the world as a whole focus on his abilities and his training rather than the blades, which just seem to give him a level playing field instead of an advantage.

I had some dealings a few years ago with a double amputee who chose the operation when he was a child to help his mobility after his legs were gravely injured in a fire. He felt that walking on prosthetics gave him the ability to walk which would have been denied to him if he had kept his very damaged and painful legs. A level playing field…

This morning I can’t sleep by reason of pain and as my codeine isn’t working at 4:15am BST - I’m awake and listening to the radio. There has just been a piece from one of the BBC’s Afghanistan correspondents, and it has me musing again…

I’m complaining to myself about the pain caused by my disability and the lack of the  effect that a relatively small amount of opiates isn’t having. However, Afghanistan produces the most amount of opium in the world; Governments try to stop production, exportation, processing and supply as heroin. However, I still need a little of it for a restful night.

The interview was about the hidden face of opium consumption, the use of it by Afghanis themselves, something that doesn’t seem to make the headlines. There were a number of heartrending instances mentioned. These included the fact that mothers feed opium to children to keep them quiet while they work and people that are forced into urban shantytowns to find nonexistent work use it to escape the worst of hunger and despair. The correspondent said that corruption is rife and journeys are punctuated with numerous official and unofficial checkpoints demanding bribes for safe passage. 

Millions have been donated in aid and yet people are starving. Perhaps then a plentiful supply of opium is a valid escape from despair in this case. Puts my complaints in perspective, today at least.

After speaking about Pierre in my last Blog, let’s broaden the subject a little I was musing about wetsuits, not being the most boyant of beings myself (in my first school, I was awarded a Great Endeavour Badge for trying and failing to swim but not giving up - otherwise known as sinking a lot!)

Pierre’s wetsuit helps him cope with life and as a modern disabled person with Cerebral Palsy, I also need things to help me to deal with a world which doesn’t quite fit me. I have a stick which helps me walk without falling over, but like Pierre, this medical help doesn’t complete the job. Pills and potions didn’t seem to help him, and my limited mobility is only safeguarded not improved in the modern world.

The world is more and more motorised, towns seem to be planned for motorists. Getting from place to place is difficult on public transport and parts of my town are inaccessible to most pedestrians, let alone those with a disability. So, I needed a figurative wetsuit. As Star Trek type transporters weren’t available, my wetsuit is a wonderful Emotion Red Nissan Micra Mobility Car, and I will take my Driving Test in a couple of weeks.

You could say that I’m beginning to float at last…