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Archive for the ‘Invisible Illness’ Category

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..

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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.

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.

The true face of Autism.. via @dontplaymepayme

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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