Trust me, I’m a Doctor…..

November 28th…

We do trust our doctors, literally with our lives. They are learned, experienced and we happily trot along to see them, safe in the knowledge that they will cure our ills with a wave of their pen..

Until they mess up. And mess up. And mess up again… Slowly but surely I have lost my whole-of-life, total, blind-faith in the medical profession and instead am now full of mistrust, criticism and oft-times, disdain.

Having been ill now for roughly 8 years (discounting the CFS I’ve had since I was about 12, following a bout of Glandular Fever), and still being officially undiagnosed, I think I have the right to feel this way. Dont get me wrong, I LOVE the NHS.. having lived in Spain for 5 years, I appreciate our fantastic system and hard-working professionals. I threw my rose-tinted glasses away and stamped on them though, about a year ago.

I have had “weirdness” now for the past 8 years.. shaking, numb patches, dizziness and vision disturbances being the worst of my problems. I’ve had various tests and have always been sent away with “we don’t know what it is, maybe stress?” Last year I added pain in my hands and feet to my symptoms and again, consulted a doctor. This one did blood tests and found my inflammation levels to be high and so referred me to a Rheumatologist. I was living in Kent at the time and duly attended to be told that I showed classic symptoms of Rheumatoid Arthritis but they needed some more tests to be sure. Due to family illness, I moved to Bedfordshire at this time but returned to Kent to have full body bone-scans last November.

Results came in.. but as I had moved, I was discharged from my Rheumatologist in Kent and the test results were posted.. and never arrived. I remember phoning the Kent hospital at least 4 times, each time I was given the promise that the results would be re-sent to my GP, each time they weren’t. In the meantime, I managed to convince my GP that my foot pain had worsened and that I should see a Rheumatologist at my local hospital. At that time he started me on medication for Rheumatoid Arthritis as he too believed that was the cause of my problems.

I arrived at the hospital, full of hope that either the results from Kent would have arrived and show something up, or that I would be diagnosed/treated at last. The doctor was an ass. I don’t say that lightly. To be fair, he didn’t have my results but barely examined me, kept asking if he knew me as I looked so familiar and sent me on my way with a referral to Psychology as I obviously had “a woman of your age’s aches and pains”.

I was beside myself. I made it out of his office and to the stairs, where I sat and cried my heart out with frustration, humiliation and despair. You KNOW when there is something wrong with your body, I believe that 100%. The Psychology appointment letter arrived so I wrote to reject it, making a point of stating that I knew the “specialist” was wrong in his diagnosis. #mybad (it seems that we are not “allowed” to self-diagnose nor disagree with our doctors).

I digress.. shortly after, I received a letter from my GP asking me to make an appointment at which I was told they had finally received my files from Kent. Halelluliah.. I had Hallux Rigidus (arthritis) of my big, right toe. At last I had a name for the pain, even though its kinda hard to pronounce : )

In March I saw an orthopedic surgeon who told me I needed a Chilectomy (bone shave to remove the excess bone growth on my toe) and added me to his waiting list. I waited. I waited some more. I developed pain in my left toe and worsening pain in the whole of my right foot. I waited on.. In April I hurt my neck while putting a trampoline together, I called the emergency doctor out one night as it was so painful, hot and swollen. He gave me painkillers and sleeping pills.. ahhhhh… sleep…

In June, after much nagging, I was re-referred to the orthopedics department as I was so concerned about the deterioration in my right foot and felt that the bone shave would be a waste of time and money as the bone was growing so fast. I am certain that unless the cause of the problem was treated, the bone growth would continue. The consultant disagreed, didn’t take any new X-Rays and sent me off with a flea in his ear for wasting his time.

Since then my GP has performed acupuncture, signed me off work, taken me off the arthritis meds (as they were damaging my liver) and upped my painkillers several times. In August I was seen by a different specialist surgeon for my left foot, who agreed with me that I need a different operation on my right one and then proceeded to discharge me accidentally.

So here I am, months later and now barely able to walk. My neck is on fire as are my feet and I am in constant, severe pain. Tomorrow I will finally see a Rheumatologist about my neck, on Wednesday I have an appointment with the specialist foot surgeon, having been re-referred after breaking down in the GP’s office a month ago. Hope is in sight again..

Respect their soul… by Tony Martin

My cat has a flea allergy. It only takes one bite and it sets him off. He scratches and looks tatty, and he also gets depressed. He will take himself off to a dark corner and sit. He hasn’t the sort of brain that can decide to do that. His brain is focused on food, hunting, sleeping and females.

A human being also doesn’t choose to get depressed. Our brains can make decisions, we can choose what music we like, what food we like and lots of different things, but we don’t choose depression.

Now my therapist would, I think, say we can choose to be happy. I’m undecided about that at the moment. What I do know is that depression is a reaction of the soul to outside circumstances. Some people have a chemical imbalance it seems, and medication works, however there has been no evidence ever to prove this is true. That doesn’t mean it isn’t. This is my article though and I’m writing about how I see things. So you might not agree and frankly I don’t care. I do care very much about people though and I think most people who get depressed tend to have that trait to their personality.

Having depression is frightening. Fear is a regular visitor. I can be afraid to be happy and I can be afraid to be unhappy. The in-between is safer and that is depression. Depression for me started very early. My Mother suffers with depression but in her day it was called “nerves”. Because of my Mother’s nerves I was sent away at about 2 years of age because I was “always crying”. Actually the fact was she couldn’t cope with a baby. I understand now how hard it must have been for her.

When someone is depressed things are hard. Demands on a person become huge. Expectations like lead weights. Cooking can seem impossible. A bath too much to contemplate. And that doesn’t mean all people who are depressed smell and don’t eat. I’m very particular about things like that. In fact depression can also make it hard to relax, break routine. Being very clean can be a reaction to depression as much as not being able to face a bath.

I am finding it hard to write about depression because it isn’t something separate from me. It’s a reaction of my soul. So it is entwined with who I am.
I am not always, in fact I’m never, sat in a corner unable to move. This is the great fallacy. People with depression are not weak. We are very strong. I am strong. I’m funny. I get pleasure from the smallest things. A ladybird can be fascinating and beautiful to me. I enjoy laughing.

I believe depression is a result of a lack of love, recognition, stimulus, fun. It’s when the little person looks at the grown up as their God and God is screwed up. If God, who is always right, all-wise, all-powerful, if he does something, like withhold love, then the little person believes they are bad. Because God (the parent) is good. This was my depressions birth.

We are all unique, depression is unique to each person. A doctor giving antidepressants out is akin to a mechanic handing you a spanner when you take your car in complaining somethings not right.
This is why I would advise anyone, who knows someone who is depressed, to listen. Forget every book you ever read. Every time you felt low. Treat a person who is depressed as you would anyone. Listen to them, give them your time. Treat them as an equal. They have depression, and they also have a soul.

Respect their soul.

Tony Martin ( @redfoxcountry )
Confucius: Have no friends not equal to yourself

Vitiligo.. anon

When I was a kid, I was – for one reason or another, usually childish malingering – in the GP’s surgery more often than a kid should care to be. The GP would always say that I looked “very pale.” He encouraged my mum to get me out into the sunlight as frequently as possible. Mum concurred, and I was thrust into the world at every available opportunity to become more “healthy looking.”

I went brown, and then I went browner still. I felt that being light-skinned was something to be ashamed of. By the time I was 37 I was the brownest white person this side of Greece (if you can forget for a moment that Jodie Marsh ever existed). I was the Tanning Champion of the World. So dark-skinned was I that people would ask me if I was “from the Med.” I was quite proud of this. Nobody, but nobody, could ever accuse me of looking “pale and unhealthy.”

And then – irony of ironies – I got vitiligo.

What the hell is vitiligo? Nope, I wouldn’t have known either if I didn’t have the bloody thing. Vitiligo (pronounced vit-ill-eye-go) is a skin disease that causes patches of your skin to go white. And by white I don’t mean creamy or pinky or celtic white, I mean white white. Paper white. Cue ball white. Corpse white. What happens is that the cells responsible for your skin’s pigmentation (melanocytes) cease to function: they have, in all likelihood, been killed off by a wayward immune system. There is no known cure. Its only physical effect is the depigmentation of your skin. (For a more in-depth description of vitiligo, its symptoms, and its effects, you can read more at The Vitiligo Society website

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My vitiligo began on my face, of all places, in Spring 2008. As I hadn’t seen the sun in a good while, I thought at first that last summer’s tan was fading unevenly. I thought it was odd but no more. Over the course of the next few weeks the patchiness on my face became increasingly pronounced, and I began to seriously worry about it. There were brown patches on my face that seemed to be getting darker, and there were lighter patches on my face that were definitely getting lighter. (My dark skin wasn’t, in fact, getting darker – this was an illusion created by the lighter patches). And then, in the blink of an eye, I was – and I hate this word but it’s probably the most apt one – piebald. People began staring at me in the street (some of the fuckers literally craning their necks to get a better look). I began to find it difficult to leave the house. I wondered what the hell was wrong with me.

Shortly after my face began to depigment, other areas of my body began to follow suit. I suddenly had some white fingers and I had some brown fingers. My neck, my chest, my legs, everywhere, went patchy. I was pretty much devastated.

Within a couple of months I went from being a normal, not unconfident, person to a shell of a man. I stopped going to work. I stopped seeing my friends. I just stopped, full stop. I felt that I looked like someone who’d had a bucket of acid thrown over them.

After about three months isolation, with some total areas of depigmentation on my now map-like face and body, I motivated myself to go to the GP. The stares on the way to the surgery and in the waiting room were horrible. I felt like a freak. I was a shaking, anxiety-ridden wreck. From the GP to the hospital and blood tests for Addison’s Disease and thyroid disorders… My bloods were ok, thankfully. Then I saw a dermatologist, who confirmed that I did indeed have vitiligo and prescribed… a floppy hat. I must never, ever, go in the sun again, I must wear sunblock even in the winter (I can burn in literally two minutes on a sunny day), and the best I could hope for was that the depigmentation would be total, and fast.

The dermatologist did, however, book me an appointment with the Red Cross. The Red Cross is the only organisation in the UK that provides a skin-colouring test for the provision of what they call “camouflage” for vitiligo sufferers. What happens is that you sit in a chair while a very nice elderly lady takes out several pots of a hard, muddy substance, and “fills in” your white patches using a finger dabbed in that substance. The colour that matched my dark patches was “Light Indian.” I asked the nice lady if this was a very common disorder and she told me it was, and that she’d just had a nineteen year old girl in with a level of depigmentation not dissimilar to my own. I felt so, so sorry for that poor girl. If this condition had so shafted me – a middle-aged working class bloke from Brum – then what the hell must it be doing to a young girl like that? I made a donation to the Red Cross and went off with my little pot of mud, feeling miserable for a girl I’d never met, but hopeful that this tiny pot might help get my life back on track.

I used the pot of mud for the next few months. It would take about two hours to accurately fill in the depigmented gaps on my face. It was an extremely tedious process. I had some sort of powder to put on top of it to make it waterproof, but I couldn’t get on with it and usually left it, hoping to god it wouldn’t rain. Sometimes I’d put too much mud on and have to wash it all off and start again. But I thought I looked ok-ish when it was all done properly. I started getting out and about again. I regained a semblance of confidence, and my totally ballsed-up self-esteem scraped itself off rock bottom to somewhere near the bottom. I began working for my dad’s business. It wasn’t my line of work but it was something. I grew my hair long to cover my horribly patchy neck. My friends and family were by now aware of the problem and kept schtum about it, like you do. Then, in a jewellers shop in Brum, a shop assistant asked me if I was “in the theatre.” I asked her what she meant and she said that she wondered, seeing as I was wearing makeup, if I was an actor. I could have died.

I carried on using the mud but with a lot less confidence. I was afraid to get too close to people I didn’t know in case they noticed my “camouflage” too.

Last year, my face thankfully became totally white. I think I’m lucky in a way as the process of depigmentation seems to have stopped now. I have completely white face and hands. Everywhere else is, and will probably remain, patchy brown and white. I would have been really pissed off if the depigmentation had stopped when I had two brown cheeks. That would have been just rubbish.

As it stands, I now tend to just use tinted moisturiser or (dare I say it, being a bloke) foundation. There, said it. I’m not ashamed of that, just a bit embarrassed. I don’t attempt to look brown; my only desire is to take the corpse-like glare off my face. I hate going out in the daylight, and I rarely go to “new” places, just in case the lighting is too severe. I still don’t like being too close to people, and I perpetually worry if I’ve got my colour “right.” I don’t think I’ll ever be the person I was in my former life, but I’m slowly getting to grips with it.

My children, bless their souls, remind me from time to time how bad I look. My partner paid me a compliment the other week to which my eldest said “How can you say that, mummy – look at his hideous skin!”

There are several different “classes” of vitiligo. The class or type you have depends on the areas where depigmentation has occurred. Some sufferers’ depigmentation is restricted to one area, for example to a hand or an arm. You have probably seen someone with this type of vitiligo. I think it’s the most common. It is known as “focal” vitiligo. The rapper Krizz Kaliko has this. Krizz’s depigmentation occurs around his eyes. His first album was actually called “Vitiligo.”

 

“Universal” vitiligo is the class applicable to me. This is when depigmentation occurs over the whole body. I suspect that the most famous vitiligo sufferer, Michael Jackson, might have had this type of vitiligo too. I was never a Jacko fan, but it annoys me when people insinuate that he was attempting to become a “white man.” If he did have his skin bleached then that would most likely have been to “even out” his colour. Bleaching treatment is available in the US for vitiligo sufferers.

Editor note:

N.B: it has been widely reported that Prince Michael Jackson (Michael’s eldest son) is also a vitiligo sufferer,  at least putting to bed the rumours of his parenthood I suppose..

My Son and I….

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.

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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.

The true face of Autism.. via @dontplaymepayme

We’re In It Together.. by @DisabilityXpert

We’re In It Together, Its Just Some Upto Our Toes while Others Are Up To Our Necks – Response To Cabinet Spending Review 2010

On 20th October, the Chancellor of the Exchequer George Osborne delivered his spending review designed to reduce our national deficit. In the early throes of speech Mr Osborne stated the better off will pay and lose more proportionately. Now in the speech itself there was very little detail as to what the real life effects of the cuts made would be on the public on the receiving end (however there appears to be a former rainforest of supportive documentation, but one that stuck out horrendously to me was people on state paid sick pay will only be able to claim it for 12 months apart from extreme cases.

Without going through the supportive documentation, it would be fair to assume this means Employment Support Allowance, about which my concerns are well known among my followers and this appears to be another slap aimed at the work-shy but hitting those in genuine need in the process.

I will be looking through the documentation when I can to find the definition of an ‘extreme case’ based on the fact that I consider many of the stories I have received, it seems many extreme cases are being refused Employment Support Allowance in the first instance as 70% of failed applications are overturned at appeal. So on the face of it, it seems that months of battling to receive, what for many is a genuine entitlement, you are then time limited on your right to receive it.

Don’t get me wrong, the deficit needs to be reduced, I’m not an economist so am not best placed to advise how this should be done and benefit fraud is wrong and should be addressed, but on the face of it this hardly seems fair and proportionate to me.

Disability awareness by @HCAuctionsUK

I am a thirty four year old woman who has MS. I was diagnosed in January after being hospitalised because my symptoms were so bad I couldn’t cope any longer. I had to suspend my studies at university – in the hope that I would be able to return in September – and claim for Employment and Support Allowance. I also had to claim for Disability Living Allowance. 

Anyone who has ever claimed these benefits will know how hard it is.

For ESA I had to go through a 45 minute phone call to a call centre, at the end of which I was stressed, humiliated and exhausted. And that was only the beginning.

I was then told that I wasn’t entitled to it because I was still a student. I had a letter from the university which stated that I was no longer considered a student, that I wasn’t entitled to use their facilities and I was no longer exempt from Council tax. 

This wasn’t good enough. So in effect, for one government branch I was a student, for another I was not. How do they figure that one? And why are they allowed to get away with it?

I appealed against the decision. They upheld their original one. I appealed again. By this time it was April. 

Then I had another relapse. A bad one. So bad that I could barely get out of bed. I didn’t want to eat, I couldn’t bear noise or light, I couldn’t even talk on the phone. When I did get up I had to go back to bed a few hours later. If I made it past 7 pm that was a victory. My head felt like it was being constantly assaulted and I was in so much pain I spent all day in tears. I wondered every day how much more of it I could take.

And I couldn’t even cope with opening the post.

So I missed the medical assessment I was supposed to attend.

Two months later when I had recovered enough to open the post, I rang the Jobcentre and told them what had happened, and asked what I could do. The woman I spoke to was very unhelpful and said I should write a letter and tell them what was wrong with me so it could go on the file for the next time I claimed. And she had the audacity to assume I was suffering from stress or anxiety. 

By this time I had had to drop out of uni completely as I couldn’t tell them if I would be well enough to return in September. (As it turned out I wasn’t)

And I faced the whole battle of applying for benefit all over again.  

This time they were satisfied that I was no longer a student and processed my claim, dependent on passing the medical assessment. I don’t know if you’ve ever been to one of these but they are awful experiences. 

Even if you can barely walk and never leave the house you still have to go. I had to take my son with me to lean on as support.

The doctors don’t know much about MS and I couldn’t show them because it’s an invisible disease. There are no scars, plaster casts or broken bones to show them. 

So I was shaking with fear from the moment I got the appointment till the day the result came through. Why? Because someone who knows nothing about me or the disease was about to decide whether I was fit enough to return to work. I knew I wasn’t, my neurologist knew I wasn’t and so did my nurse, my GP, my physiotherapist and my occupational therapist. But their opinions mean nothing to the Jobcentre. After all, what do they know? They are only specially trained medical professionals.

I was lucky, I passed and was finally awarded ESA in May. It had only taken 5 months. I was placed in the ‘potential to work’ category which had me shaking with fear again. Was I going to be forced into jobhunting before I had recovered?

Again I was lucky, my advisor at the Jobcentre knows what the situation and assured me I wouldn’t be forced into anything before I was ready. 

I still can’t help worrying though.

As for DLA, what a minefield. The form is 48 pages long. It took months to fill in. Or rather, it took my friedn months to fill in since I couldn’t hold a pen. It’s invasive, humiliating, exhausting and emotionally draining. How would you like to specify every single thing that’s wrong with you, from your walking ability to your bodily functions? The only thing they don’t ask is what your shoe size is. 

I half expect that next time I have to claim. Because yes, despite the fact that my condition is progressive, the DLA, once finally awarded, lasts only for 2 years. Then I will have to do it all over again.

But at least it was all over.

Except it’s not over. I now live in fear of it all being taken away. Because our ‘coalition’ government – and I say that in quote marks because it’s less a coalition than a takeover of the Lib Dems by the Tories – have decided to cut the welfare bill by focusing on ESA.

There are too many cheats out there they say. 

Despite the figures which go against this, and despite all the evidence that these benefits are so hard to claim that there can be very few people who slip through the net, the Government are determined to punish me and others like me.

They announced a new medical test would be necessary to claim DLA. As if it weren’t already hard enough. The sheer stress of it is enough to put many genuine claimants off. I would have been one of them if I hadn’t had a friend who’d been through the process with her ex husband and was able to help me with it.

People with MS, along with those suffering mental illnesses, will be among those groups who suffer most. Simply because you can’t see what is wrong with us. And if you can’t see it, it isn’t there right?

I now live with the fear that I will end up with my benefits cut and nothing to live on because the Government is insistent on punishing those who are most vulnerable. And then what will I do? If I push myself too hard I make my condition worse. Can you say rock and hard place.

I want everyone to be aware of this, because disabled people are forever overlooked. Their issues are somehow never as important. And the Government continues to punish us. It isn’t fair, it isn’t right and it shouldn’t be allowed to happen. They have to make cuts yes, but not by penalising some of society’s most vulnerable people. 

I am on my way to recovery now, but it’s been a long road – all year – and it’s not over yet. But I constantly have to justify myself because to the man on the street I look perfectly well. I have no idea how to change that but I can try to make people aware online. One of my problems is numb hands. I cannot control my fingers as well as everyone else. As a consequence I make a lot of mistakes while typing. I was always good at English and I hate bad spelling and grammar, yet I now have to deal with it everyday. I spend a lot of time correcting the mistakes I’ve made because I hate making them. It’s dull and extremely frustrating.

So I decided that one way to make you all aware of just a fraction of what I deal with everyday, is to stop correcting them. Only for a day, I don’t think I could bear it any longer than that.

On Friday, October 15th, I will not be correcting myself on here and on Twitter. I hope that it will give you some idea of what it’s like to be me.

 And these sites are just a few that everyone should read. They are sad, angry, frustrating and eye opening. Which is why they need to be read.

I’m sorry, can you repeat that? by @splottdad

My name is Paul, I am 56 and I am deaf. I haven’t always been; I was born without any hearing in my left ear – which is, to all intents and purposes, a cosmetic attachment. It served no function other than allowing the opposition prop to get a grip when I played. The right one was working fine though, until one fateful day in January 2008.

I went to bed after a stressful and busy week, supervising an office move. I had a headache and a bit of a “buzz” in my head, but took some paracetamol and retired. I awoke next morning without the headache, and thinking how blissfully quiet Splott was on a weekday morning.

For the uninitiated, Splott (or the People’s Republic, as it is known in Labour Movement circles in South Wales) is inner city Cardiff. Shirley Bassey was born here. Forget that bollocks about Tiger Bay – she was born in Splott. It just sounded better probably!
Anyway, I awoke and quickly realised that I couldn’t hear at all. I resisted the temptation to crap myself, though it was awfully tempting, got dressed and came downstairs. What to do? I live alone. My daughters’ are grown up and their mother and I, whilst still very good friends, are separated. She lives the other side of Cardiff.

I know, I thought, I’ll ‘phone . . .  no wait, can’t do that! I ended up walking to the GP with a pencil and pad, and spent a fun few minutes “communicating” that way. To cut a long story short, I eventually was diagnosed as having a viral infection, which was by now untreatable and the damage done irreversible.

There you have it. After numerous tests, visits to audiology, a session of having a mould taken of my right ear for an earpiece, and assorted consultants, I now have a hearing aid. Problem solved . . .

Only it isn’t, because I still can’t hear. I hear noise, not detail. I can hear you speak; I just don’t usually understand what you are saying. I have to work at it. I really REALLY have to concentrate, and I find that physically tiring. Worse, I have to explain and pretend to be amused at the jokes; tolerate the bored looks when I ask for repetition; and all this whilst suffering from severe tinnitus as well. I didn’t mention that, did I? Sorry – I do that a lot too; apologise. I have to apologise for being disabled.

Society seems to like “absolutes”. They would like me to be completely deaf apparently. Unable to hear anything at all. Anything less and I am not trying hard enough. But few disabled people satisfy that criteria. Most visually impaired can see something, albeit relatively useless for the main purpose of sight. Many of the mobility impaired can move, but not well enough to walk.

Similarly, I get people tell me of their “League Status” of disability, if they had a choice!! “Oh, you’re deaf? Still, not as bad as being [delete applicable] blind/ crippled/ mentally ill/ a Tory, etc.” – no, I made that last one up. Thank God I am not a Tory. I really would have to end it all then. My response; come here – I have two knitting needles and I’ll accommodate you “pal”.

I am luckier than most, I know that. I endure no pain as a result of my disability (well, not physical!) and I know of many people who do, including someone who is becoming increasingly special to me. Whilst the comments and the attitudes can be hurtful, I am better able to deal with them than many.

I am 6 ft tall and 17 stone, confident, loud and after 40 years in the world of work – much of which has been involved with Trades Unions – I can handle an argument! Rumour has it, I even start a few!

My employers, in the main, have been good. My family have been brilliant, as have many work colleagues and friends. However, I have also had a large degree of insensitivity, some abuse and a complete lack of support from a major Trade Union that I was formerly very active in for many years. I hasten to add, not my current one.

My life has changed. I grew up in 1970’s/80’s and loved the music of the time. I was at live gigs most weeks, often 2 or 3 a week. I did the Festivals and accumulated an impressive vinyl/ cassette/ cd collection. It’s all gathering dust now. I haven’t had the heart to sell it, which I should do, because it feels like I would be selling my youth? Yes, I know – sentimental claptrap.

I have had to change my job. I have had to change my ways too. I have to be a lot more patient, less aggressive and more focused, and that is hard for me. I grew up in the hearing world. BSL (sign language) is no use to me. All my friends are hearing. Lip reading is limited too. At 56, my eyesight isn’t that wonderful either, and some of you still insist on looking away or putting your hands in front of your face, or something.

Anyway, this could be the first instalment or the last. It depends on feedback. I have some personal insight into disability in society, into induction loops and a whole host of things, I may be deaf, but I am still a gobby bastard with opinions. Thank you for listening, and please be grateful that you can…
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Twitter, Autism and Me.. A Guest Post

I am autistic. I have known this since I was 20 when I was tested for Dyslexia and Dyspraxia while I was at University. I also am Dyslexic and Dyspraxic but I have all three marginally. This is how I was ‘undiscovered’ for so long.

I haven’t told many people, the only people that know is the Doctor and medical team that tested me and a few very close friends. I haven’t even told my family.

I’m not ashamed of my autism but I am scared that people will treat me differently. The people I have told have shrugged it off with a comment such as “I always knew you were special.” Always the same joke but then the seriousness of “I didn’t know” or “I’m sorry”. Of course they didn’t know, I didn’t always know! But I do hide it and cope well in order to hide it. However, I don’t know why they are sorry as I’m not. It hasn’t changed my life, just given more clarity to it.

I’ve always been independent, segregated, for want of a better word, from ‘society’ because I like it like that and I struggle to cope in many social situations. I often find myself confused which leads to frustration as I don’t know why I am confused and then I get upset. Not visibly so, but I often cry when I’m alone because I can’t cope.

I have friends, lots of them, but I only have two friends I can rely on and have seen me hit the bottom and have helped me back up. These two I have had before I found out.

I’ve never had, what one would call, a relationship. I’ve never had a girlfriend. I’ve had sexual encounters but because I haven’t been able to relate to the other person the experiences have been unsatisfactory, almost worthless. However, I’m not actively looking for a girlfriend as I’m desperately trying to navigate the relationships I already have.

Autism, at times, can be lonely other times it doesn’t affect how I operate. However I would not want not to be autistic because then I wouldn’t be me. Twitter helps overcome the social awkwardness as I am dealing in the written language and no one has to see me and I don’t have to see them either. I don’t consider myself disabled, but I do have difficulties and Twitter helps overcome them. Twitter is a lifeline to anyone regardless of ability because sometimes only strangers can comfort because they don’t come with preconceptions. Some judge, but the majority don’t.

You have heard my story of how autism affects me and how Twitter helps. What’s your story?

Missing Out…. Again by Bendy Girl

Today I deathwalked a longer distance than I’ve been able to manage in 12 months. To say I was jubilant when I arrived home is understating the case, ecstacy would be closer to the truth after a year of injury after injury, hideous Oxycontin withdrawal and many other setbacks, just to get back to a distance I could acheive without as much difficulty 18 months ago is incredible. 

I’ve only been home half an hour and that sense of excitement has been whipped from underneath me by a phone call from wheelchair services. I’ve written about this dilemma in the past, the rules governing wheelchair provision on the NHS are so surreal Dali would have shaken his head in bewilderment and wandered off to find something not in the ‘too hard to think about’ box. 

My Occupational Therapist at the Wheelchair Centre is a lovely lady and excellent OT. She’s known me since I was in nappies and is very saddened by the situation I’m facing, but her hands are tied by the national rules governing wheelchair provision.

 

The rules state that no-one will be supplied a power chair on the NHS which is capable of being used outdoors until they have used a powerchair indoors for a minimum of six months. A rule, which might just possibly seem sensible in abstract to politicians with no understanding of disability or it’s reluctance to be shoehorned into bureaucratic boxes but not to anyone else, particularly not the people falling outside of those boxes and missing out on vital services and equipment.

Living in a very small one bedroom flat with standard sized doorways I could maybe just about get a power wheelchair into my home, but it would only be possible because I’m physically so petite. Given that Ehlers Danlos Syndrome affects the entire body, the demands of getting into and out of a powerchair everytime I needed to move to another part of the flat would be equal to, if not worse than the demands of staggering around the flat, I’d just be trading one set of dislocations for another, equally painful and degenerative set.  The additional downside of using a wheelchair indoors would of course be a further, rapid deterioration in my overall condition, leading to more dislocations, more pain and more disability. Remaining a part time wheelchair user is optimum for my physical and mental health, the overall cost to the NHS and the benefits bill, but does not fit within the rules of the system.

 

 

 I have an attendant wheelchair, the kind that can only be used if you have someone to push you. It’s great, but means I can’t go anywhere to use it unless I can find someone who’s not busy and is both willing and able to push me around.

 

It’s also difficult socially as typically people walk or wheel side by side, and being in an attendant chair prevents that. I suspect it’s one reason why small children get so fractious in pushchairs, being unable to see or properly speak to the person pushing you is conducive only to tantrums.

 

I am not entitled to a standard manual wheelchair as the system recognises that it would be dangerous for me to use one. I could attempt to persuade my GP to risk his professional reputation and a future negligence action by getting him to sign me as fit to use a self propelled wheelchair, but he should no more be put in that position than I should be put in the position of having to lie and say I would use a wheelchair full time indoors. If my GP were willing to claim that I’m capable of using a wheelchair I’m very obviously not, then I could obtain an NHS voucher and purchase a power assisted lightweight wheelchair myself, making up the rest of the cost out of my benefits. That is unlikely to happen, partly because my GP wouldn’t deem me fit to use a self propel wheelchair and partly because the kind of lightweight, power assisted wheelchair I would need would be cost prohibitive.

It is possible to use High Rate Mobility Allowance to purchase a powered wheelchair…but not if you’re already using that HRM to fund a car. I am currently not using my HRM for either, it goes into general living/travel expenses as I already had a car, but as I need to change my car to a more accessible vehicle, assuming there are no problems with my DLA reapplication the HRM will be committed fully to a vehicle leaving no money for a wheelchair. 

 

So, once again I’m back at square one. There is absolutely no doubt that an appropriate wheelchair would make it more likely for me to obtain paid work. Access to work is the scheme set up to provide specialist equipment to disabled people to enable them to work. Unfortunately one needs an actual job, or concrete job offer to use access to work, and I have neither. The 8 hours a week I’ll be doing from my sofa on a voluntary basis absolutely won’t count. 

I have three options. One; the situation remains as it is now, hopefully improved if BendyBus ever gets it’s act together enough to leave the care of mechanics. Two; I lie. To my GP, to my consultants, to the wheelchair centre and claim I will use a power wheelchair full time indoors for six months so that they eventually consider me for a powerchair which works both outdoors and indoors. Three; I try to navigate the maze of charities and beg for funding, unlikely to be secured as EDS is not important enough a condition to have rich and powerful charitable representation. 

The years of not being diagnosed and accused of being a liar have left me with a stubborn determination to cling to the truth at all costs. I am just not willing to put myself in a position where I have to lie to the clinicians caring for me, even if that lie weren’t completely detrimental to all concerned. I don’t have the energy or the mental strength I’d need to go cap in hand to a round of charities, which leaves option one as the only choice.

More than three years on…I’m still missing out.