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.

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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

Rose's Story

I have fallen between the cracks of the social system. As a disabled parent with Fibromyalgia and arthritis, lone parenting my child with autism, none of the various council Social Service branches knows who is supposed to be dealing with me. Adult social services says my parenting role isn't their problem. Child and Families will only deal with my child and not helping me to fulfil my role as a parent, and neither of them recognise the full picture.

Once upon a time, I was a bodybuilder, working as a paralegal-in-training to a top lawfirm, under the best partners. Then one day the pain started, and it got worse. I worked out more, just dealing with it - as I've always done with tough times, and it just spiralled. Brushing my teeth became an ordeal. I had to choose clothes I could actually fasten as I could no longer do buttons. I would sit on the bed for ten minutes, fifteen, the tears streaming down my face as I muttered under my breath "get up, get up, you have to get to work, get up, get UP."

I lost the job. And then I realised all those years of working hard and being a good little cog in the great wheel meant, well, they'd just go and get another cog, and throw the broken one away.

Weight piled on and I didn't know what was wrong. Thankfully no cancer; thyroid looks dodgy but without a private test they don't know for sure. Of course, since I'm female the first diagnosis was "depression" and "stress". But then, the fibromyalgia was diagnosed, and my whole world changed. I thought having a disability with a name would help open some doors. Instead, it closed them.

It is a rare thing for me to ever say to anyone just what my life is like. I don't tend to look at it too closely - it's sort of necessary to put on that Superwoman cape and put on the Everything is Fine mask to do your job as a parent. But there are things which throw the whole of my current life into sharp relief, when I have to take a good long look at just what has happened to my world - filling in DLA paperwork for my son, for example. Reading just how much of my day is taken up just taking care of my son the best I am able with every joint on fire is depressing - even more so that I don't even bother claiming for myself as I've already had the condition dismissed on one occasion as being a psychological response to being a parent and I "just need more sleep".

I get that sort of thing a lot: if I "just take a sleeping pill/anti-depressant (and wasn't I depressed anyway?)", if I "just lose some weight and eat properly", if I "just take time to work out a bit daily", I'll improve. That's all very nice advice, but ignores the fact that I was a bodybuilder BEFORE all this. Discipline isn't my problem, eating right isn't my problem. My son has never had a McDonalds hamburger, we don't have soda in the house, or candy. I eat 1200 calories a day, more healthy than any doctor or trainer I see, and I lose no weight. If I work out one day, I feel it for four...and who will tend my son then? If I'm depressed it's because I am fighting an uphill battle completely on my own whilst various council offices try and decide whose problem I am, and what it will cost to give me a paltry two hours' coverage just to clean my house (and so far, the answer is neither of them).

The simple fact of the matter is I know more about fibromyalgia than my GP - and thus he has given me carte blanche to deal with my health, not that I didn't already have it. Traditional medicine is good at treating acute conditions, but the chronic or the "mystery", that's something one has to deal with oneself. There is no cure, no treatment for fibromyalgia which is even remotely recognised by NHS - there are certainly things which help, but who is going to pay for it? How do I prove to social services that I am actually disabled when they can see my limbs are whole? I've become a scholar of myself - I know what foods will set off a flare, and what foods help. I know how much I can do in a day, and how much I can't. More often than not, I just have to ignore that and just get on with it anyway, and that only makes things worse.

In the past year alone I have gone from walking under my own power to needing to go up and down the stairs one at a time. I can't get in and out of the bath anymore, and I wash up in the sink. Everything aches, and the exhaustion means I go through the day in a haze, forcing myself to focus so I can be a parent to my child. I tried silversmithing, and had to give up as my hands locked. I typed legal documents at home - same. I had a rather successful toiletries and soapmaking business but it was so exhausting I had to give it up. Now I'm trying to write again, and just hoping that maybe I'll be able to find at least some job I can stick with for a little while before my disability strips that away as well. My son and I never go out as I can no longer catch him if he runs off, no longer have the energy to chase after him, I don't have a scooter, no car, or anyone to help me watch him when I go out because neither Adult services nor Child services can understand why I need these things, or which department the money should come out of.

We're prisoners in our house, and though I have tried to make it as beautiful as I could (and I even started a blog called Gilded Cage to show progress), we're still trapped here. I spend a lot of time staring at the world from my small daybed by the window, wondering where my life went.

Applying for any help has resulted in being constantly turned down. Rare for me, I called during summer holidays in tears to the Adult Social Services as I was desperate to help, any help, I didn't know what - and was told brusquely that they didn't want to hear about my disability, and I needed to "see a doctor" if there were problems. I had a nervous breakdown in June, and still had to try and chase for assessments for aid...again, I was turned down. I've also been turned down for DLA for myself and having to go through an appeals process, which may take up to a year before I get any results...and, if the reports are true, I'll be persistently put through the stress every few years to see if I actually "need it", given by someone who can't see pain.

Now that's just for me...add to this my disabled child. My son is not like "typical" autistic children - it seems the type of autistic child people are used to dealing with are the quiet ones who stand in a corner and flap their hands. My son is INYOURFACE, running round at full tilt, no sense of danger, always the centre of attention. He's a ball of energy and takes two people to keep him under control at school. Cheap toys which another child might be able to make last for a while break after a few hours. There are a lot of charities willing to offer toys or short breaks, but toys would have to be very durable, and short breaks to be honest, are not "breaks" for me - they're extra work and I'm usually exhausted by the end of it. He can be polite and talks very nicely, but that is due to me keeping a careful eye on his diet, giving him various supplements (vitamins, Omega 3-6-9), and lots and lots of work. It's nice that people think he is therefore a very well behaved boy...but it doesn't help to think that I have found a "cure". A medicated person is not cured. I have had to make this painfully clear on one occassion by sending my son into school for a week without any of the typical measures (no supplements, allow him to eat gluten foods). He exploded at school, and they couldn't believe how he was behaving. I told them calmly that how my son was behaving was exactly like what he was - a child with autism. What they were seeing was what I saw every morning just before school, and every day after school when he was exhausted from trying to be a good little "mainstream" child. He isn't - rages, tantrums and so forth are NORMAL, not "bad behaviour". I deal with it daily.

I also know more about what my son responds to than anyone else - I know what he loves, I know what he hates. I know how to deal with his tantrums and when to give in, and when not to. In my son's case, because he is a child, and because he is mine, his issues are the more frustrating as the sheer lack of knowledge out there (or the "latest study" which tries to paint a broad swath over what is rightfully called a spectrum disorder) does my son more harm than good - I can see issues coming from a mile away and I can warn others of its impending arrival, but I'm rarely listened to until the explosion arrives. The lack of help for what has already been described as an epidemic is ludicrous; what good is a short break to me when there's absolutely no "break" involved? And why is it so bloody hard to CONVINCE anyone of this without extensive studies and bits of numbers on a graph when an hour in my son's presence speaks for itself?

How is it people who should know better think "if a child talks, he's not autistic"? It's even been hinted at that I have "embellished" on his DLA claim. But these people aren't the ones who clean the faeces off the walls at 2am, or get the phonecalls from the school when he throws a chair at a student. If my son appears "cured" it's because of all the work and time and effort I have put into raising him. I sacrificed my health, my career, my marriage, my life on the altar of parenthood. But that doesn't mean my energy is inexhaustible.

When I finally managed to secure DLA for my son, the person I spoke to who confirmed the backpayment was coming was told not to file to my old account, but to my new one. I was told he would "try to remember to post a note" to send me a form in the post to change the details (which never came) and that was that. End result £800 deposited to old account, and I was only about to get £350. The rest has been absorbed by the bank and there was "nothing the DLA can do".

I tried to close the door to the study so my son couldn't hear me sobbing, but he did anyway. It may seem a "administrative error" to the Council, but that cost me over £400. There are quite a few of these "administrative errors" of late - and for someone who has to fight to find the energy and concentration to fill in the dozens of labyrinthine forms we're given as disabled people, that is time I cannot afford to lose.

It's a job to you, I know; it's just a number on the budget printout. It's statistics.

But this is my LIFE you're cutting.

I only have the energy to be an advocate for one of us...and because I am a parent, I will be an advocate for my son. For myself: cod liver oil, calcium and paracetamol, warm baths and the heater cranked to full in my room till it feels like an oven so I can sleep. When my son is in school I try and clean up the wreckage of the house, ignore my own needs, and just try to hold it together for my child. No washing the hair, no new clothes, none of those things which most women consider vitally necessary to life. I haven't been in a beauty salon in years - and if I did, who would wash my dishes? Trips out are exhausting, even for good things, and there's no transportation programme where I live which will help disabled families.

I learned not to ask for help because as I am not a UK citizen (US citizen and I worked here when I could work) I know exactly how the UK views immigrants. I've been benefit scrounging scum before I even bothered to accept benefits, and so I refused to do so. No fancy cars, bling jewellery or five-bedroom house here; I have no telly, no car, no fancy phone. I live on less than £10,000 a year, and I have done so without taking any benefits at all.

It's an existence. It isn't a life - and all those years I worked, I thought the money would be there when I needed it. When I paid my taxes I wasn't "immigrant scum" then; the government took my money quiet gladly.

When I need the help...where is it?

I know the convenient thing right now is to Blame All That's Wrong With Britain on people like me - the simple solution seems to be "find a single mother and point". But no crystal ball told me in 10 years I'd go from less bodyfat than my trainers to someone who can't walk 100 yards without falling over. When I said "I do" I didn't think it meant "until something better that isn't disabled comes along". I didn't know my son would stop talking at two, and I wouldn't hear him say "I love you" till he was five. I didn't forsee the years of tantrums and his tearing my hair out in fistfuls, the agony of trying to keep walking with my son on my back, going silent due to pain, the day my ex walked out because he couldn't take it anymore.

No amount of money is going to change that fate. But if I can somehow manage to LIVE rather than just eke out an existence, then I deserve to do so.

And when the time comes for you - and it will, hopefully later, rather than sooner - I'd hope the money is there for you too.

Emma's Story

I’m a single woman in my late twenties who lives alone and dreams of being a writer. I have ten GCSEs most of which I got B grades for. I have three A’Levels and a degree. And I’ve never worked.

I have Cerebral Palsy (CP). That means I’m life long disabled and in my case I use a wheelchair most of the time. In 2003, I was also diagnosed with depression and I’ve spent most of the seven years since then on anti-depressants.

My income is Disability Living Allowance (DLA) and Incapacity Benefit (IB). It’s not always easy.

When I was 16 my DLA was transferred from being paid to my Mum to being paid to me. I was asked where I wanted it paid and I named a specific post office. They arranged for it to be paid into a different post office to the one I asked for. Because the one they chose was my closest one (and presumably because it was where my Mum had it paid for years). Never mind that it was a tiny village post office with no wheelchair access!

When I went to Uni I wasn’t eligible for some means tested benefits I could otherwise have applied for – because I had the right to apply for a student loan. Even if I didn’t take it I couldn’t have the benefits. I took out the loan and now have a lot of student debt. I’ve been told that if I ever work it will only be part time. And based on my fatigue levels doing a few hours a week of voluntary works I agree with those who said that. Realistically (and I do hate to say this) I will never pay it back or even reach the earnings threshold where you must start repayments. Yet, every year the Student Loans Company sends me a statement. It’s a continuing waste of money. I try not to think about my student loans if I can help it. There’s no point. I’m not in a position to do anything.

Once, I was asked to provide a sick note long before the previous one was due to expire. I phoned and queried why and was told it was standard procedure to check if I’d got better. I replied that I have an incurable condition. The person from the benefits office told me “Well, you still might have got better.” Very upsetting! But at the time I had a wonderful GP who was also disabled. It really helped me to deal with someone who “got” being disabled. His response was very verbal and I can’t print it but basically he had a suggestion for where they should be told to go.

Benefits being stopped because of DWP mistakes has happened to me a few times. Once they couldn’t even tell me why it had been stopped, just that it shouldn’t have been.

My condition means I will always qualify for middle rate care and higher rate mobility on DLA. It won’t ever improve so I’ll never be able enough for lower rate care. And I don’t anticipate my condition deteriorating to an extent I need higher rate care. To get IB or ESA you need 15 points on the WCA. I once worked out my score on the scale they use. I got 15 points on the very first question alone. And overall I got enough points for more than three people to claim IB. Yet sometime in the next few years I face being reassessed and moved to ESA. This worries me a lot. I think it’s probably an expensive, stressful and pointless waste of time for someone in my position. And then a few years after that a move onto Universal Credit. Another worrying and expensive waste of time most likely. The government think differently. So in an attempt to save money they cause stress, worry and fear, making people’s conditions worse and possibly even ruining lives

I belong to a Sailability group. One of our boats is called Spirit of Ivan. We were given it shortly after Ivan Cameron died and it was so named in his memory (with the permission of the Cameron Family). The committee wanted to call it that to honour him as “a little boy who will never sail her.” It’s not quite as weird as it sounds, although the Camerons have never been part of our group, we are the closest Sailability to Witney where David Cameron’s constituency is. By naming our boat for him we were also showing our support for his family. For the loss of one of us.

Now David Cameron is Prime Minister. I thought he understood what disability and being disabled meant. But he and his party won’t stand up for us. I am proud to share my story and be a part of The Broken of Britain. If no one will stand up for us, we’ll stand up for ourselves (even if several of us can’t actually stand!).