PIP, DLA and AA
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What do I think of pip?

JadeLouise150791JadeLouise150791 Member Posts: 1 Listener
edited May 2017 in PIP, DLA and AA
What do I think of pip? Well I spent years first getting pip over my mental health issues. Agoraphobia, adjustment disorder, ptsd, anxiety and depression. It took approx 3 applications to get that far. Ive been suffering with dislocations in my ankles, knees, wrists, shoulders, fingers and thumbs, subluxes in my hips, and my shoulder blades wing out. A constant pain factor of 7 on a good day, on a bad day a steady 14.

I have had these issues since I was 11/ I'm 26 in July. I used to be so active. Running cross country fir England gritting my teeth as I ran on an ankle of torn ligaments and tendons after being run over.

In 2015 I finally had my diagnosis of hEDS or EDS type 3 as it was at that point. This came after years of misdiagnosis my entire life and an argument with a specialist shoulder surgeon that eds was a very real prospect given my joints and history of injury.

 I applied April 2016, to pip for mobility. On the basis that I can no longer walk upstairs I literally have to crawl up them to ensure I don't fall down them for the thousandth time, I have to slide myself down the steps with my back against the wall holding onto the handrail in front of me, all the whole my shoulders falling out of their sockets because my arms are on level with my shoulder area and my shoulders are so bad I cant lift them beyond boob height without pain and injury by way of dislocation. I cant walk very far because my ankles dislocate beneath me causing me to fall, my knees to twist, and dislocate followed by ny wrists and shoulders dislocating as I land. Needless to say very painful.

But not as painful as the judgment I get for falling over in the early morning out of nowhere. Questions like am I drunk because I'm on so many meds I feel dizzy and tired and the fact I'm falling everywhere and at times slurring my words. The stigma of being a drunk is made worst by the fact I very rarely drink.

 Once every 4 months perhaps if I'm lucky. Pip decided to refuse my application and take away the daily living component. 9 months it took to be heard at appeal. They failed my mandatory reconsideration a month later, failed to send me a letter almost costing my appeal, and I had to request this letter and appeal and hope that the appeal tribunal would take my case even though it was late because of pip not sending my mr decision. I was lucky and they did.

During this 9 months I fell behind on my rent top up nearly losing my house. Pip took carers away at this time as well, and esa refused to reinstate my sdp until September when my advisor for pip phoned them and told them they owed us this money and that they should have reinstated sdp as soon as they shut the carers down. I received the backpay in September. I was advised that I should stop fighting based on my dislocations and eds because this would highly likely cast doubt on my mental health.

 So I was basically left still struggling to even be believed over my genetic lifelong condition. I'm in a severe state having a minimum now of 8-10 dislocations every day. Having to wear braces to try to control the dislocations and support my cartilage and tendons and ligaments. In January my appeal was heard. At pip face to face. I was accused of lying about my shoulders dislocating when demanded to raise them further than I'm told to by medical professionals (by a mental health nurse), being forced to di squats which I cant do because they cause my knees to dislocate.

Again she wrote that I lied about these dislocations. With every one I refused to relocate it until she refused to look at them and see for herself. She wrote that I had a brilliant range of movement despite the fact I only have to raise my arms on level with my breasts and they dislocate. She wrote that I wasn't anxious at all - my legs bouncing all the time. Me constantly doing rebreathing exercises to prevent a panic attack. Failing to mention the 2 weeks prior to the assessment. psyching myself up mentally preparing for the assessment. She said I can follow and plan routes unaided despite the fact I haven't left my front door alone since nov 2011.

That's 6 years nearly. She used the fact that I continued doing the only form of exercise the hospital deemed safe - cycling. This was done for 2 reasons. 1) to prevent the falls my dislocations cause by walking 2) to prevent panic attacks sort of or at least give me a quick escape should I need it while out and about. I had to stop cycling in January after I suffered 14 dislocations in 1 hour. The cycling did not prevent my dislocations it just meant that if my knee or hip dislocated I had to straighten my leg on the bike until it clicked into place, if my ankle dislocated I had to get off and weight bear on the spot (while wobbling profusely beneath me causing falls) until it relocated. If my shoulders or wrists dislocated id have to stop and relocate those as well. And while the embarrassment of crying out with every relocation and dislocation, was still present. The embarrassment of being labelled a drunk for falling over was mostly removed... Though I did fall off my bike a few times and cause big injury to my ankle on 4 occasions, my shoulder on 2 occasions and my wrist on 2 occasions, and nearly being run over by a taxi, bus and several cars where I couldn't stop in time and I was spaced on my medication so just didn't see the massive vehicles approaching each time.

Several times my partners grabbed me from walking out into the road or tripping and falling into the road. I'm 25. I don't choose to live like this. When I'm not dislocating I'm hyperextending throughout my knees, toes, ankles, elbows, wrists, fingers and thumbs. That in itself causes pain. Ive literally got Drs baffled.

I have met 6 if that, who know anything about Ehlers danlos syndrome.
1) was the geneticist who diagnosed me within 15 minutes without needing full examination based on my medical history alone on the system and my description of dislocations.
2) was the hydrotherapist (also a rheumatologist) I was under for 7 weeks she also didn't deal with eds.
3) was another hydrotherapy session. The rheumatogist was doing a refresher on his physio and trying hydrotherapy out because he hadn't done it before. He was shocked because he's met one other patient and their problem was solely their ankles. He didn't realise it could be as bad as for me and he didn't think he'd ever meet another eds patient.
4) was the first gp I saw at my surgery. He told me off for using the term eds as it meant something else as well. When I came home that something else when I googled it was erectile dysfunction syndrome. Yeah because a young woman aged 25 will have erectile dysfunction. For god sake I don't even have a penis!
 5) is the new gp ive been seeing since just before Easter who has taken me on as a patient for continuity for my eds. For the first time ever.
6) the specialist I now see for my ankles.

 When I visit a and e I find myself sitting explaining to them what eds is more than I do being seeing to. How is it that we can blatantly have dislocations and a and e can sit and show you the differences on your xray to your previous xrays, clearly saying there's a gap here and here and here and this gaps closed between these knuckles... But you're wrist isn't dislocated, then a surgeon can look at the same wrist 6 months later with the naked eye, and agree that it is dislocated? I'm now stuck with a permanently dislocated left wrist. Because a and e didn't believe me.

Going back to pip. My appeal in January awarded me 14 points for my mental health after a long morning explaining that I have mental health problems as a result of none stop trauma in my life. Emotionally, physically and mentally. I was told by a psychiatrist that I'm not having a break down but I do have an extremely low tolerance to stress even the smallest of stress causes me serious distress and worsens my mental health. Ive been told since age 21 that if I work with my mental health this bad, the financial pressure would literally kill me. That one more stress could literally kill me. Lets not forget the fact that with all my dislocations, no workplace wants to hire a disabled person whose a liability.

That was proven by every job application and interview being rejected based on my health. Lets face it i am a liability. The appeal also awarded me for the first time ever 4 points towards mobility on the basis of my dislocations.

I think the part that made them believe me, was
 A) the fact that I took several diagnosis letters, and appointment letters with me
B) the fact if I felt disbelieved I went against medical advice and offered to dislocate the joints there and then to prove that I wasn't exaggerating. That my joints do blatantly come out of their socket so often that its almost like a party piece. Always the show stopper. Have a drink with a friend shoulder dislocates, everyone panics and is sickened when I relocate it. Get a bath try to wash my hair shoulder falls out and my arm collapses over my shoulder with my elbow by face unable to move it because its fell out of its socket and is now stuck behind my head. Try to fasten/unfasten a bra I dislocate both wrists and shoulders. That is pain for you. Try to walk upstairs, fall on my face, smash my head of the floor, fall down the stairs well up the stairs in this instance. Try to get out the bath go flying face first into the old school square shaped concrete sink on the wall next to the bath. Wind up with nosebleeds, bruised to hell and back andin agony feeling dizzy.

This is my life. This is what the pip assessor made out I was lying about. Seriously? She tried to rediagnose my Ehlers danlos as the thing I spent 15 years misdiagnosed with, just hypermobility and she just a mental health nurse. I had done 11 1/2 pages of handwritten notes on Ehlers danlos to assist when my 8yo son was diagnosed as hEDS last year. It took me almost a week based on the dislocations and pain and swelling caused by writing alone. She said that because I understand complex information, I couldn't possibly be disabled.
This offended me because

1) I once had dreams of becoming a lawyer. I passed gcse with 13 a*-c grades, and went straight into studying for a level 3 professional diploma in law with the Institute of Legal Executives. And passed along with Level 2 NVQ in Law. This qualified me alone as a paralegal. I am far from being "thick" or "stupid".
 2) my brother has aspergers syndrome and add.

My two sons are diagnosed as having adhd, and one is under assessment for autism. Not one of those children are unable to comprehend complex information. In fact in their own warped little ways they have probably a better understanding than most adults would of different aspects of life. They are all articulate, bright, and over achievers. They simply struggle in other aspects. I felt as though she was saying you have to be stupid to be disabled.

That for me was extremely offensive. I now have my pip back in payment. After 9 months of hell and coming close to losing my house and a lot of stress. this is my journey from April 2016 from simply ringing them to inform them that I had been diagnosed with eds. 2 years after the diagnosis

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