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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..

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

Stock Image

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..

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.