Friday 5 November 2010

My Son & I by Chaosgerbil

I am Chaosgerbil on Twitter, here are the pieces about myself and my son and how we all cope with our disabilities.
Myself :
In the past I have worked in retail, manual labour on the railways replacing track etc, done a job where I was driving up to a thousand miles a week to get to various sites and taught karate.
All of those things are definitely in the past now as I find it increasingly difficult to even leave the house. My problems started when I was 18 and dislocated my knee, the surgeon explained that my kneecaps sit too high in their joints and are very loose. Over the years I have had multiple full dislocations of both knees and partial ‘slips’. This has led to at present 5 operations, 2 on the left knee and 3 on the right. My last operation was supposed to be for a partial knee replacement but my surgeon decided on opening me up that he could clean the areas sufficiently and put off the replacements I will eventually need a little longer. If this operation is successful then I will need the same or a replacement doing on my left knee as they are both in a similar condition.

I have osteo-arthritis in each knee which has been confirmed to be spreading to other joints in my body, no cartilage in my knees from years of wear and tear, diabetes, depression (which I had before my knees got really bad but has steadily got worse) and just over three years ago was diagnosed with a condition called Neuropathic pain in my right shoulder, this condition is caused by a nerve going into fault and constantly sending pain signals of various types down my arm and up into my neck and head.
Besides the knee operations pain management is the only treatment for the arthritis and neuropathic pain. I have regular supra-scapula nerve blocker injections and am on three different painkillers plus an antidepressant that has nerve block qualities and liquid morphine for the really bad days.
As the pain and mobility levels have got steadily worse my ability to walk, do household chores and even play with my son have steadily decreased. I feel like a prisoner in my own house and body some days. This also means that steadily my wife is forced to do more and more on top of a part-time job, even having to change her hours at work as I am unable to walk to the end of the street to collect our son from school.
I have recently been awarded Disability Living Allowance, higher rate mobility and low rate care allowance. We have opted to use the mobility component to get a car as we currently have to rely on public transport and taxis which limits my ability to get out greatly. Hopefully this will help to give the whole family the chance to get out and enjoy life a little more, even if it is only trips to the shops or our local ice hockey team.
Having read Nadine Dorries comments about disabled people on Twitter I would like her to spend a day in my position or that of other friends on Twitter who are of sound mind but for various reasons considered disabled or house-bound.
Our son :
Ben was born with a rare genetic condition called Phenylketonuria, his condition was diagnosed via the heel prick test that all babies in the UK undergo. At 10 days old we were told by the midwife to contact Pendlebury hospital as a matter of urgency.
When you have a new-born baby and a department you have never heard of asks if you can get down to see them the same day some degree of panic enters your heart. The panic was nothing compared to the reality of being told that your child has a condition that if not treated carefully with measured quantities of special formula and later a very strict diet then they will be brain-damaged is nothing short of the world falling apart. PKU (phenylketonuria) is a condition where the body does not break down one of the base proteins found in meat, dairy, nuts and most other foods properly. If untreated the protein builds up and causes the neuro transmitters in the brain to clog, eventually leading to brain damage.

Stock Image
Ben is a bright, energetic and absolutely normal 9 year old boy. He is no different to any of his class mates at school to look at, but looks can be deceptive. PKU requires a strict diet and foul tasting supplement drinks for life. The amount of supplement is carefully worked out by the dietitians at hospital to match Bens size/weight and food intake. A lot of foods are off the menu completely, no fish, meat, dairy, soya, nuts and anything else considered high protein. No drinks that say ‘contains a source of phenylalanine’. Some other foods can be given as ‘exchanges’ as Ben needs some of the protein to ensure he grows and develops properly, the exchanges have to be in weighed and measured amounts. The amount of exchanges is dictated by regular blood spot tests sent to hospital to check on the amount of phenylalanine in his blood. Fruit, salad and some other foods are considered ‘frees’ and Ben can eat as much of these as he likes.
Special mixes are available on prescription so we can make Ben bread, cakes and other low protein foods to help make his diet more varied. Snack pots, some biscuits etc are also available on prescription but the low protein alternatives are not the most palatable foodstuffs in the world.
We applied for DLA for Ben as his condition requires constant monitoring and he needs cajoling into drinking his supplements all the time, up to an hour a time, 3 times a day at present. We were refused DlA initially and after a failed appeal and finally being successful at tribunal got his award.
DLA is not a financial reward for being ill, it is much-needed help for families such as ourselves to give Ben the best start in life we can. We do not live in the best part of Manchester and our health visitor actually said to us ‘don’t take this the wrong way but I am glad it was your son who has PKU’, this may sound a cruel statement but what she meant was that she knew we would try our hardest to make sure everything was done right for our little boy, unlike some families who would not take the initiative or even try to keep to the diet or use the formulas necessary to ensure their child grew up as normal as possible.
Life isn’t easy for us or for many families with disabled people or relatives. But we are real people, normal people who want to be treated fairly and decently. Please don’t just look at the walking stick, wheelchair or take a step back when strange disorders or mental health issues are mentioned. We have hobbies, interests and most of us a life that is so much more than being ‘disabled’.
As a family we attend our local ice hockey games as often as possible, Ben has the same interests as any other 9 yr old and I enjoy reading, chatting on Twitter and taking and editing photographs. Yes some days our disabilities stop us from doing what we want to and limit us from the things we used to do, but that doesn’t make us any less of a person.

Thursday 4 November 2010

Call for Submissions / Help Needed!

An open call to your creative, impassioned, outraged and righteous campaigning selves!

To submit Photos, Graphic, Audio and/or Video for incorporation into a new campaign video here are the ways to do it:-

If your material is under 25MB in size you can simply email it to (if your email service does not allow for such large attachments you can get a free gmail account here.

If you have your own web space or the material is already up at YouTube or Flickr etc. just email us the link.

If you material is larger than 25MB or you just don't want to send an email with such a large attachment you could make use of one of the many free file hosting sites such as or or get a free dropbox account they all have easy to follow instructions. Once you have uploaded your material email the link to so we can download it.

If those methods are not your cup of tea simply email and let us know what it is you want to submit and we will get back to you with a solution (please be patient, we might not get back to you for a few days as we get everything up and running).

Michelle's Story

Fourteen years ago I was a 21 year old in the prime of my life. I was cycling
2-4 miles a day sometimes and learning accounting skills. I worked hard all my
life. At 13 I did morning and evening newspaper deliveries. I had started
working as a cashier at 15 years old and would stay behind at secondary school
studying after hours. I got four A's 3 B's and 1 C. I then did A levels. Then
at 21 years old I took on a 14 hour shift for 2 days a week. Over a period of 8
weeks lots of strange things started to happen in my body. Intense fluish
symptoms would appear weekly 3 days after the work and each week the symptoms
were more severe than the previous. After 8 weeks I realised something was
seriously wrong. As I tried to do activity my face would go pale with a chest
pain and red itchy eyes forming. Then 3 days after I would be ravanged with
sinusitis. I also got intense chills and feverish symptoms. 8 weeks previously I
had been completely normal so I thought stopping the 14 hour shift would work.
But my body carried on doing this and the amount of activity I could do became
smaller and smaller. I soon became unable to get out of bed without the
malfunction symptoms manifesting. I became hysterical. Every single day I curse
those 8 weeks where I broke my body and made it unable to function correctly.
The doctors told me they cannot diagnose ME until you have had the symptoms for
6 months. So for 6 months I got no medical advice and no diagnosis. Going to
apply for benefits with no diagnosis is a joke. My diagnosis was 'debility' and
my GP told me that ME doesnt exist. Finally after 3 months I was so ill from not
getting correct advice on pacing and damaging myself that I was confined to bed.
I had no choice but to move back to my parents house. Upon arrival I met a GP
who knew of my condition and gave me correct advice and diagnosis.

During the previous 3 months out of frustration with my GP I looked in the
yellow pages to try to see another doctor. I saw an advert which said GP gives
2nd opinion. I went to see this GP and he charged £20 per session. He held the
appointments at a hired room in an alternative clinic. He asked me how can I
help. I told him my condition and he procceeded to ask me lots of psychological
questions. I told him that it is a physical malfunction I came to see him about.
He said it was for the sake of thoroughness. At the end I said what do you think
and he told me his diagnosis was agoraphobic. He was GP not qualified in
psychology. I was outraged and told him so and unhappy to pay £20. On my way out
I saw a man in the waiting room and told him that the doctor was a unqualified
charletan. Afterall I had just strained myself and travelled OUTSIDE through
busy city streets bustling with people for an hour OUTSIDE then an hour back!
Then he tells me Im afraid of the outdoors!

So back to the story...I had got my diagnosis and advice. And the advice was to
apply for disabilty living allowance. Since at this point I was bedbound and
using a commode it seemed like I wasnt going anywhere fast. So I applied and
they sent a doctor round. And youll never guess who the doctor was! It was Mr
everybodies an agoraphobic! The unqualified psychotherapist who likes to toy
with the idea that illness is all in the head. Perhaps he reads Deepak Chopra so
he can sleep at night with a clear conscience. Anyway he didnt remember me but
from the very moment he entered the room he started repeatedly slipping in the
comment. "When Ive gone your going to be telling everyone 'horrible DR (name)
has been round" I thought that was a strange thing to say. Anyway then we
recognised each other half way through and it all clicked and I knew it was his
job to diagnose everyone as fit to work. I carried on being polite but was
feeling outraged. Then he went downstairs and I tried to summon my father to
tell him but the doctor cornered my father. And of course I couldnt get down the
stairs. SO after speaking to my father 10 minutes he left. My father who has a
crooked walk but has worked full time all his life came upstairs and I said why
didnt you come Ive been banging 10 minutes it was very important. He said the
doctor had spent 10 minutes suggesting and counselling him on the idea that the
fact he is disabled might have psychologically affected me to also claim I am
disabled. I was seething. I couldnt believe it but I knew at the same time that
they employ someone who is cold and brutal to refuse everyone their 1st
application. And this 'doctor' knew he was horrible person and was reading these
psychology books to ease his rotting heart.

Of course I appealed and I was recognised as genuinely ill. For 6 years I got
worse until I couldnt chew my food, hold a cup to my mouth, or speak. Then I
turned it around with an incredibly strict form of eating, no sugar no dairy no
meat no fruit no oil no fat no alcohol, eating rice beans and vegetables for 8
years until I wanted to vomit. I already had to give up all my friends, no TV no
music, no conversation, just staring at a wall all day. Food was all I had left.
But to get better I had to give up my enjoyment of food and eat food I found
disgusting. But it worked and now I can go out daily in my electric wheelchair.
I got strong enjoy to lift my commode and throw it out of the window (ground
floor). I bathe myself and can walk 50 metres per day and painfully slowly
rising yearly.

I know they are going to send another Dr (blank) to tell me its all in my head
even after 14 years of recognition. But I cannot switch my illness on and off
just because they have no money. My body malfunctions ...period. I dont choose
to be like this. I didnt suddenly decide it would be relaxing and fun to have my
mother clean up my sewage because Im too lazy to go to the toilet. I didint
decide to spend thousands of pounds on powerchairs and be celibate with no
prospect of love, just so I can watch TV all day. Ive lost my chance to have
children over this illness. I cry when I see 80 year olds who can walk further
than I can, wheres the justice in the world. Ive been cheated out of the chance
at life. Every week of the last 14 years I have wished I was dead. If we had
voluntary euthenasia in this country I would seriously consider it. But rest
assured I will not die. I will continue with this tortured lifestyle where you
are deprived of so many things. I have a question for all the skeptics.

If this couch potato lifestyle is so cushy how come so many disabled people are
commiting suicide?

The TV becomes painfully boring after a few years as do the other few activities
you can do. Then you have no source of happiness and just wish for death. Being
able to walk a few metres more each year is my only inspiration