Showing posts with label work. Show all posts

On working. And sleeping. Mostly sleeping..

These days, all I can think about is sleep. When can I go back to bed? How can I fit in a few more hours? The January dark and cold doesn't help, but even on a beautiful sunny morning like today, going back to bed is all I'm looking forward to. I've only been up 20 minutes. 

 I've been in work for about 10 months. I think. One of the most difficult challenges at the moment is that I can't think properly. That's fine when it just lasts for a couple of days; but this has been months. More months than I can count without losing track. I know it was October things started to really slide, but my brain won't function sufficiently to work out the months between then and now. 

 I did start picking up a bit. But then I went to London for work, the taxi I was travelling in hit a pothole and I ended up stuck in a London hotel room with spinal dislocations and whiplash. Then, well, it's winter. So I got a bug. Then a chest infection. Then the bug just didn't clear. Somewhere in all the middle of that it was Christmas and New Year. Apart from a brief few hours with family, they went pretty unremarked. Mostly because of the 'when can I sleep again' thing. Did I mention the sleep thing? 

 The narrative surrounding work is that its good for you, good for your health even. I'd like to believe that. I'm sure its true for many people. Work has definitely been good for my mental health. I absolutely love my job. Working with Gary Bourlet and the other self advocates we've supported is a pleasure and enormous privilege. It gets results too. One of Gary and Shaun's ideas was warmly received by the Employment Minister who is looking into possibilities of making it work. 

 So yes, the job is great. My colleagues are fantastic. I'm employed on an incredibly flexible set up. I can't imagine a better employer. In theory I have the freedom to work whenever I want, so long as I get my 16 hours a week done. And of course I don't have to do them all in the one week. But the convoluted tax credits vs means test benefits rules mean I can't reduce them to say, 10 hours a week. Then I'd have to go back onto ESA. And then apply for permitted work. Politicians talk alot about how Universal Credit will be the answer to all this. But then Universal Credit functions about as well as my spine. So I shan't hold my breath. 

 Which was all ok. But then it was summer and I had a bit more energy. And the upper spinal dislocations weren't quite as bad at that point. But they are now. Just holding my own head up is hard work. I've seen babies with better head control than I've got. And after months of failing to be able to find the right words, to not be able to write, or to even think coherently..they're sort of coming back. A bit. 

 And as it turned out, there are certain types of brain damage that go hand in hand with the kind of spinal trauma I'm regularly experiencing. So having wandered around muttering "I've got brain damage" for months might've been more accurate than I'd thought. 

 When I tell people how hard this is, how at the moment all that's keeping me going is the thought that if it all gets too bad I can go back on ESA, but that I really do love my job. They say that's sad. 

 But they don't really understand. Not any of the work is good for you people. How can anyone possibly understand what this is like without being in a similar situation. Or how, even with the most supportive employer in the world, how the pressure just increases as you fall further behind the tasks you need to do, but your brain just will not work sufficiently to order or achieve anything. My employers don't put any pressure on me. But its there. Inside me. And there is an election on the way. That sort of imposes another timetable on everything.

 Because we all want to believe that work is good for people. And in lots of cases it is. Apart from when it isn't. Even when I'm doing well and feeling ok, I'm managing work by not wasting spoons on anything else. Including washing and dressing. I am not convinced that is good for me. Its certainly not good for the people around me. But given I'm so exhausted I don't want to see, speak to or do anything, the dodgy smell is less of an issue than it could be. 

 There's alot of talk amongst disabled campaigners about moving from the Support Group to work. The holy grail for everyone is 'flexible working'. I know, I spent years believing that if I could just get the right job, with the right set up, then working would be possible. 

 And it sort of is. So long as I do absolutely nothing else in my life. So long as I use my 4 or so functional hours each day on nothing but work. This weekend, thinking I was getting better I went out for a few daytime hours. It was the first time since the London whiplash incident. The outside felt jarring, surreal. I went to a meeting, which if I'm honest was more work than not work, then went to bed. The next day I met an old friend for coffee. Then I went to bed. Then I started projectile vomiting. And it didn't stop. Splatter pattern ratings were assigned. As ever, when vomiting, the force pulled at my spine. All the good work my physio had done two days before was undone. 

 Spoonydoc has written this excellent piece in response to the current discussion about moving straight from the support group to full time work. It really is excellent, so do read it. But I can't remember the point I was trying to make anymore. I've been writing for 20 minutes or so, and awake for an hour. I'm so tired nothing will keep straight in my head. I need to go back to bed. But I also really do need to use some spoons on getting clean. The post vomit smell is bad enough for a day. Beyond that, its beyond rank. 

 But showering takes energy. Energy I simply don't have. 

 What I need is just to turn everything off. For months. To sleep as much as I need, to focus on the routine of getting washed. At least more days than not getting washed. To eat well, to spend time on physio. To try and find some form of exercises that will assist my feckless, workshy neck muscles to remember why they exist and hold my bloody head up for me. 

 But that's the key difference between paid work and being on an incapacity type benefit. Even if you're doing lots of voluntary work..voluntary is just that. When you need to focus on your health more than anything for an undefined period...well, you can. You have an income to allow you to do so. Sure, its not much, but unless you've also got an enormous debt, it is usually enough to keep a roof over your head, have enough to eat and pay the bills. 

 Other people tell me this is really sad. I already know that. I live it. I live with the sadness of never having the energy to do anything. Of knowing that I'm constantly irritable and unpleasant to be around. With the fear that what I'm doing to my body will ultimately result in a spinal dislocation so severe the cognitive impairments it causes will never go. That the voice loss won't come back. Oh and the quadriplegia risk. 

 I love my job. I quite like working really. Or I think I do when I'm not so exhausted. I certainly love the work Gary and I do. I must do. I don't do anything else. 

 But please, don't make the mistake of thinking that this is easy. Or that work really is good for everyone's health, we just need to think of work differently. Because frankly, that just isn't reality for some of us. 

 There was probably meant to be some sort of concluding thought to this. But I can't remember it. And I need to go back to bed. 

"Don't throw tea at me!" A Very Bendy Job Interview

Yesterday I had my first, formal job interview in more than a decade. It went well...I think, although my criteria for 'well' may not be quite those of the typical job seeker. For me, well, meant that I did not throw up in front of or on any of the interview panel. This is a good thing as apparently vomit can be a tad offputting in an employee.

We got off to a good start with the water, offered to me in those light weight, disposable plastic cups which are definitely designed to do nothing except fly independely across a room, showering their contents as they go. I'm not sure 'do you mind if I stick to using my plastic bottle' is a standard interview question, but it really should be. 

I also did not fall over, well, not completely fall over anyway - judging by the haste with the chair of the interview panel displayed in attempting to reach me before I tried to get out of my seat, falls risk was paramount in their minds.

When the noise of dislocating joints was too loud to ignore I tried to hide my grimace of pain with a smile. That kind of got us all through the first dislocation which was only a finger when the panel all twitched and asked if I would perhaps like a rest. We soldiered on and clearly dislocation training worked as when I managed to pop back both shoulders, elbows and multiple ribs stretching with the impressive staccato sound effect of multiple gun fire only the panel twitched. I was cool, calm, laid back and professional throughout. Honest. Hopefully the recording did not pick up my muttered cursing at the pain or the nauseated expression of the panel members.

Being aware that body language is an important part of any interview strategy I tried really, really hard to have some that wasn't rude. Sensibly I wore a dress long enough to avoid potential panel pant flashing incidents.That worked quite well. For keeping my pants hidden. Less well on the not flashing my bra at the panel when it turned out the only way I could get up from the chair was to lie my entire upper body on the table and lever myself up. Fortunately one panel member was busy sprinting across the room to assist me and the others politely averted their eyes from my bra. I felt reassured that at least I had on a bra, and that it was both pretty and clean. I'm sure they'll give me the job on that basis alone - 'can manage to find and wear clean underwear' is definitely a formal requirement in most jobs.

The 'managing to remain upright in a seat' part of the interview was a challenge too far for me and I appreciated the panel's polite response to my constant wiggling, popping and occasional slumping onto the table for a rest mid sentence.

The interview ended on a wonderful question 'Did Kanga tell you about that?' to which the only obvious answer is 'Kanga facilitated communication'. Sadly I was too distracted by intense pain to manage something quite so coherent but I was very glad to see the panel respected Winnie The Pooh as much as I do.

Weirdly, despite all that I enjoyed the experience. I know, I know, it really is time to address getting out more often to do things classed as 'fun', job interviews not being top of most right minded people's idea of a good time. I think the panel enjoyed it too as one member generously offered to let me throw water over her anytime, but specified no hot tea. Perhaps they've been reading my blog?

Since being returned home I have done nothing but sleep, take oramorph, sleep, take more oramorph and whine pathetically about how bad I feel. When I was leaving the interview it did occur to me that potentially this opiate/sleep/pain cycle might impair my performance in any job and that perhaps even Atos had a point finding me unfit to work. Frankly that thought was obviously running through the mind's of the panel too so we did have a little chat about the feasability of the job for someone in my position. They were very encouraging about time to rest and recover though so that was kind. They also had a better mastery of body language than me too as they clearly projected 'I think you should probably be in bed love' without any need for a Babel fish translator.



Deputy Speaker's Internship - Day 2

Day 2 started much as day 1 did - early morning whimpering, a cup of tea with a chaser of oramorph in the hope that it would reduce the pain enough so that my feeble whimperings when I sat down weren't audible to others. It may or may not have done the pain trick, but it did at least make the scoot across the bridge to the House of Commons much more 'ooh pretty' and the battle with the supposedly automatic wheelchair doors another nice man had to wrench open much funnier. I'm not sure what poor Alex made of my mumbling about morphine as I arrrived, as at this point in the experience I hadn't yet realised he knew absolutely nothing about my condition and had been told not to ask.

We started the day more formally with a cup of tea and discussion in the office, then we went off to observe a Work and Pensions Select Committee evidence hearing of user experiences of the work programme. That was a somewhat misleading title, as although there was lots of talking about experiences, there weren't any actual people who might have used the work programme present...just people who's job it is to somehow comment as though they are users of the work programme. It was very exciting to be in the actual room having watched so many of these hearings online, and hilariously weird to be tweeted by my friends suggesting if I just moved one seat along they would be able to see me on the live feed.

I would have liked to stay and see the whole evidence session - there were some very interesting points being made about the complete lack of information for employers or work programme providers in relation to disability - ironically some of the same issues Alex had experienced when he was working to put the intern programme together for the week. The particular scandal was that there was no point of contact for providers or potential employers to be given information about reasonable adjustments, how to help support people or even to speak to Access to Work. It's no wonder the work programme is less effective than not making any interventions, what on earth is the point of throwing endless money at something when its actual design prevents it from working?

However, all too soon we had to leave and to something even more exciting than a work and pensions select committee (yes, I really must work on the getting a life thing!) This was a wednesday, and so a PMQS day - the big draw of the week. Alex and all of Nigel Evan's team made huge efforts to get us tickets as they knew how excited we were about being able to watch that. To make it even more special we were able to go into the central lobby to watch the Speaker's Procession just prior to PMQ's and then were in the house for the feistiest, funniest PMQ's I've seen in a while. It is overwhelmingly loud in there and MP's of all parties are astonishingly badly behaved.

Then it was straight off to a grassroots football event sponsored by McDonalds. I was deeply disappointed that Big Mac's were not on the menu! Fortunately I'd mentioned my utter ignorance of all things football prior to going into the event, so when the nice, smiley man came up to us to say hello, Alex introduced him by name and explanation - it was Sir Geoff Hurst (who, for those as ignorant of football as me, apparently scored goals in the 66 World Cup) We had a chat about my 'swizzy pushchair' which he immediately apologised for calling a pushchair and explained he gets muddled up, partly because he's got young grandchildren, and partly because he spent alot of time pushing his daughter in her wheelchair when she was poorly. I explained that my Dad sometimes calls it a pushchair too, and that as he actually did push me in a pushchair that its an understandable dad mistake to make! I was sorry to hear that Sir Geoff's daughter had died, and we had a little hand hold empathy moment in the middle of the football reception.

If you're looking for football details from the reception...I don't have any sorry! But we did also meet some man called Pat who was quite handsome and apparently used to be good at football too, and there was a fascinating, inspiring woman speaking who was a volunteer football coach in addition to being a policewoman.

We finally managed to get some lunch at about 2.30pm in another of the subsidised restaurants, but for me the day was a real struggle and I'd had to duck out of the football reception briefly to take more oramorph.

The last event of the day was observing a debate on the privatisation of the probation service - it didn't last long as the division bell rang and all the MP's went off to vote, but the most interesting bit was how many of the issues relating to the failure of the work programme came up in relation to probation services, especially as the criminal justice and probation services spend so much time with people with mental health problems or learning disabilities. It showed very clearly that whatever the rights or wrongs of privatising probation, there isn't any point doing anything to it unless we have effective back to work support which can cater for a huge range of barriers.

I was really struggling with pain and fatigue so after we'd finished and I got to go and meet fellow campaigner Jane Young for the first time, its no wonder she was horrified by how pale I was! But, it was still a fantastic day and great to be able to talk it through with friends for a few hours afterwards.

Photo shows Sir Geoff Hurst, a white man in a dark suit with a red tie leaning on a lectern as he gives his speech on grassroots football

Work Part 6 - I knew it was too good to be true

Part 1 - Employment History
Part 2 - The Application
Part 3 - The Telephone Interview
Part 4 - OMG I've got the job!
Part 5 - There's always a but...

I spoke to S, my Disability Employment Advisor (DEA) today and told her the good news. She's delighted for me. Which is good, because as I'd already begun to fear the rest of the news is far from good.

Permitted Work while receiving Income Support means I can only keep £20 of anything I earn each week. I foolishly assumed that meant I could just be paid £20 a week in expenses but unfortunately it's not that simple. Minimum wage is now £5.93 an hour, but 8 hours of work for £20 is £2.50 per hour, way below that.  With the word manager in the job title it is likely to attract someone's attention during the administrative process of applying for permitted work and be highlighted as concern about a company contravening minimum wage legislation and exploiting a disabled person using the permitted work scheme. That situation may well occur, but in this case my employer is desperate to do everything they possibly can to enable disabled people to work using the permitted work scheme and want to ensure they are fairly paid for everything they do. 

To protect myself and my employer the only option would be for them to pay me minimum wage for the full 8 hours and for me to declare that each time to the Department of Work and Pensions. The DWP would then deduct that sum from my Income Support each week. There are other potential pitfalls to do with nominal wages and impacts on my other benefits such as Local Housing Allowance and Council Tax benefits, but the main concern is national minimum wage.

I'll be honest, I simply do not have it in me to declare the money to the DWP and have it deducted from my benefits each week. I can't deal with the bureaucracy or the constant stress that can cause, especially not so soon after filling out my Disability Living Allowance forms, never mind the chaos that would ensue should it impact upon my other benefits. All that hope and excitement I felt when I was told I had got the job has been destroyed by bureaucracy.

The anomaly surrounding permitted work has been removed from Employment and Support Allowance which doesn't distinguish between contribution and non contribution related incapacity benefits and allows either claimant to do permitted work. ESA also allows for permitted work to continue longer than the mandated 12 month maximum for Incapacity Benefit claimants after which they have to move into full time work, supported by tax credits if necessary or they have to stop their permitted work for a year, after which they can return to the permitted work scheme for another year. Presumably Iain Duncan Smith's Universal Credit scheme also allows for long term permitted work. It's great that this obstacle has been recognised and ironed out of the system but that doesn't help me or any of the other people in reciept of Incapacity Benefit or Income Support who have yet to be migrated to ESA. Whether or not claimants will still be transferred onto ESA in the years before Universal Credit is introduced is not yet clear, as going through two separate, enormous migrations of benefits within 5 years, with all the administrative costs, stress and bureaucracy would seem ludicrous, especially at a time when saving money but protecting services is supposed to be the priority.   For now claimants have to deal with the system as it stands, and that means abiding by the current rules for permitted work.

I want this job enough to say to my employers that I'd like to do it on a voluntary basis, so that is what we've agreed upon. It's still exciting and I'm so happy to have the opportunity to work in a formal role for a project I really believe in, but all that joy at finally getting an actual paying job has been ruined by the inconsistencies of the benefits system.

Work Part 5 - There's always a but...

Part 1 - Employment History
Part 2 - The Application
Part 3 - The Telephone Interview
Part 4 - OMG I've got the job!

I'm not entitled to do permitted work as I don't receive Incapacity Benefit. Well, I sort of am as you can do permitted work whilst receiving Income Support but I'm only allowed to keep £20 a week of anything I earn. I'm disappointed, but it's still an amazing opportunity and that £20 a week will definitely come in handy to cover my rent shortfall. Fortunately the employers don't mind and because of who they are I have no concerns about being exploited. Also, it's a proper job, eight hours a week from home. It's all a bit frustrating but I'm so happy someone interviewed me and wanted to employ me that I don't care.

I don't know how to go about notifying the DWP about working so my new employers and I have agreed I will contact my Disability Employment Advisor to find out the details and we'll take it from there.

Work part 4 - OMG I've got the job!!!!

Part 1 - Employment History
Part 2 - The Application
Part 3 - The Telephone Interview

I'm so excited I'm incoherent. I've got a job. Me. After 7+ years out of work. I'm so happy I could literally faint.

I can't quite believe it, it's amazing. Someone wants to employ me, in a job I can do from home. Actually, I am going to faint now.

I've got a job!!!!

Work part 3 - The telephone interview

Part 1 - Employment History Part 2 - The Application

It went well, or at least I think it did. It's hard to judge how an interview went with such a lack of interview and work experience, but close friends and a fellow blogger have given me loads of emotional support, advice and reassurance. It's fingers crossed and hope for the best time now whilst they make their decision.

Work - Part 2 - The Application

Recently I saw a job advertised which I was really excited about. The job description could have been written for me, and best of all, the job was part time working from home, 15 hours a week using the Permitted Work Scheme for Incapacity Benefit. Not only that, but it was for a company who's whole ethos I really believe in. 

So, I've applied. It took quite alot of dithering and stress as it's all coinciding with the tail end of DLA form filling but I've decided the worst they can say is 'no thanks' and I've got nothing to lose. Well, nothing except another knock to my confidence. I've written the asked for personal statement and blog post, sent them off and then spent the past few days stressing myself out that I've done it all wrong and not provided the information they asked for at all. 


The good news is I must've done something right as I've got through to the telephone interview stage. Woohoo! Just getting that far is an enormous boost, but I'm still really nervous about the prospect of the actual interview.

Work - Part 1 - Employment History

I've applied for a job. Gulp. It's been a long time since I've worked, so long it all feels like a lifetime ago. I was 13 when I got my first job, a sunday morning paper round with a bag of papers so heavy I gave up on the idea of a bike after being picked off the floor by several kind strangers, something I did not then forsee becoming a theme in my life. As soon as I turned 14 I graduated to after school shop work, waitressing, babysitting and later the glamour of washing dishes in a restaurant at the weekends. I worked all the way through school and university - like most students of my age group I had more than one job alongside studying nannying, bar work, shop work, whatever I could get.

My first recognised dislocation happened when I was working as a camp counselor in the USA, a couple of weeks after I finished my finals. It was a serious one, in retrospect it was far more than just the shoulder dislocation I was treated for as it also affected my spine and ribs. Surgery to repair my shoulder came at the end of the summer and I returned to the UK to recover a few days later.

I claimed benefits then, reluctantly so, but knowing that I would be without income for at least a few months it was the only option. It was 1998 so a nice lady from the DSS came out to the house, filled the form in whilst I was there and was able to ascertain that the injuries I had were genuine. Those benefits ran out 3 months later, by which time I'd been told I probably needed further surgery to my shoulder, but not to worry, I was young and so could just treat it as a year out then get on with my career.

I got a job waitressing in a busy restaurant but within the first few weeks it became very obvious that I couldn't even carry a single plate without causing my shoulder to dislocate. I stuck at it, thinking my strength would improve but before long my shoulder was getting worse and I reluctantly gave up the job. Giving up that work meant returning to the jobs I'd had whilst at university. I'd worked as a hostess/cashier in a local restaurant and hadn't wanted to return there as the owner really enjoyed sexually harrassing me, but it was work, it paid relatively well and the chefs would intervene, hide me in the kitchen and make me food until I'd finished crying on the occasions the owner went too far. One of the regular customers managed a local veterinary practice and after witnessing many incidences of the boss's idea of humour told me that I absolutely did not have to put up with such abuse and arranged an interview at the veterinary practice he managed. I got the job as a receptionist and was able to leave the restaurant. I also worked 16 hours a week in a video shop earning just under the limit to pay national insurance, although I did for the first time earn enough to pay national insurance when I was working at the vets. They were jobs I could fit in around physiotherapy and hospital appointments and were far easier on my joints than the physically demanding restaurant jobs had been.

The year out turned into another and I found I was still waiting for surgery.  By the time I reached the top of the waiting list there was far more damage to my shoulder than there had previously been, but for what at the time were inexplicable reasons the surgery didn't work as expected and I found myself able to do far less than I'd been able to do before. I just couldn't manage to keep up both jobs and physiotherapy so eventually, some months later I had to give up the job in the vets. By then it was more than two years since I'd finished university, once again I was on a waitinglist for surgery and really panicking about my future. It was impossible to find full time work that I was able to do physically and that would be possible to fit around the random nature of NHS appointments so I continued working 16 hours a week, not earning enough to pay National Insurance and waiting to 'get better'.

'Getting better' never happened, in fact things just got worse and in addition to the physical difficulties I was experiencing I was starting to have serious psychological issues as those around me went from sceptical glances to outright criticism, fuelled by the doctors treating me, some of whom had no qualms screaming at me in front of a ward full of other patients that I was wasting their time and had nothing wrong with me a psychologist couldn't fix. No-one ever did refer me to that mythical 'able to cure everything psychologist', but many, many insisted they would.

I applied for jobs, lots of jobs, anything and everything but I already had several years of health issues and part time work to explain away. Once employers heard that I was on a waiting list for further corrective surgery they were understandably uninterested. I gave up on any kind of graduate job after going through the interview process for the NHS graduate management scheme. I reached the final interview stages and was told by the Chief Executive who interviewed me that I'd given the most impressive interview she'd seen, after which I had been recommended for a place. However, they regretted to inform me I had not been successful and she could only urge me to reapply when 'my health was more settled' following the next surgery as she could not see any reason I would not be successful. I never did reapply, my confidence had been destroyed by then.

The next surgery eventually came, then the next, and a few more for good measure with a few experiemental procedures along the way and before I knew it I was over 25 with a patchy at best employment record, still living with my parents and too unwell to even manage 16 hours work a week. The benefits system had moved on, slightly stern but kindly ladies no longer came out to fill in the forms and check circumstances were as claimed, you just had to figure it out for yourself and wait months while the details on the form were checked. As I was over 25 I was no longer protected by the 'young person's rule' which exempts younger people who've been in full time education from the need for National Insurance contributions to claim Incapacity Benefit. I was 26 and had been working in part time roles that didn't earn enough to pay National Insurance so I fell through the gaps in the system onto Income Support, a distinction that would later prove vital.

I carried on applying for jobs, although my physical and mental health were very poor. After years of failed surgeries and outright disbelief I reached a point where I had no idea whether I was so mentally unwell that I was doing all this to myself and just didn't know. Diagnosis of Ehlers Danlos Syndrome was still several years in my future and I was desperate and depressed. I was fighting a GP who made his view that I was a lying attention seeker abundantly clear and blocked an initial application for Disability Living Allowance.

Finally after being sent to a psychiatrist and widely regarded as lazy and workshy my shoulder surgeon promised that was it as far as surgical treatment options were concerned and one of my job applications offered me an interview. It was a part time, low waged, administrative role in the NHS but I was overjoyed, seeing it as a stepping stone to a career. I was offered the job after interview and started in the February of 2003. Access to Work, the scheme which provides equipment and support to disabled people in the workplace had a duty to assess people within 6 weeks of their start date. My assessment was 5+ weeks after I started working, which doesn't sound much but by then the damage had been done. I was working in a very isolated part of the hospital, alone in an office which was in a locked corridor. I felt far more lonely than I had done when I was out of work with the added complications of an unsuitable chair and an old folding table doing the job of a desk. It had metal edges and cut into my arms as I tried to sit high enough to reach it.

When Access to Work eventually assessed me they came up with all manner of adjustments to make, but as is so often the case I was shoehorned into them rather than the adjustments being customised to my needs. A phenomenally expensive height adjustable desk and special supportive chair were ordered, but the chair was that bit too big and my feet never reached the floor. Despite the high price tag they didn't make chairs or desks that went small enough and I certainly wasn't confident enough to object. I loved being employed but was struggling physically and emotionally which was compounded after a serious dislocation in the office when I was alone meant I remained on the floor for an unknown length of time before being carried out of the hospital I worked in by paramedics taking me to another hospital. 

I was 'medically suspended' after that until the correct office furniture and equipment arrived which took some months. In fact it took so long for all the equipment recommended by Access to Work to arrive that some of it still had not turned up after I'd become too sick to work and had lost my job by September 2003.

Although I'd had more time off sick than I had worked my employers wanted to keep me as they had no concerns with my work or committment to the job. A 12 month unpaid career break was negotiated so that I could return to work at the same grade although probably not the same role once my health had stabilised.

I was diagnosed with Ehlers Danlos Syndrome in February of 2004 by which time I was desperately unwell, in debt, disabled and on the verge of mental breakdown after so many years of disbelief and accusations of malingering. My award letter informing me I'd been awarded Disability Living Allowance arrived the morning I was to travel to London and be diagnosed, the award dated from prior to the loan I'd taken out to survive whilst I had no wages or benefits and would have negated the need for the loan had I known.

The disbelief and disrespect I'd been shown by so many doctors continued to cause problems for me despite being diagnosed by an internationally recognised expert in Ehlers Danlos Syndrome. A rehabilitive programme was suggested but never materialised once I returned to my own area. My shoulder surgeon looked extremely uncomfortable but to his credit apologised to my face for having missed the underlying cause of my problems. Other doctors had left themselves no room for retreat from their accusations towards me and continued to disbelieve me, to the extent that I was accused of having falsified the letter sent to my GP by Professor Grahame after he diagnosed me. It was an impossible situation for all concerned. After I was able to change to a new GP practice this problem was gradually left behind but all the accusations of attention seeking still remain on my medical records.

When my twelve month career break was over I'd still not managed to find a way of accessing any of the rehabilitation methods recommended and had to regretfully inform my employers that not only was I not fit to return to work but that there was no expectation that would change in the immediate future as I was unlikely to be able to access any treatment or support.

That was the last time I worked.
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