#NaNoWriMo 2011 (#disability #spoonie #mentalhealth) - by @CreativeCrip / @IconicImagery #TBofB

"This year I hope to finally set a realistic and achievable #NaNoWriMo goal by focusing on writing blogs for thecreativecrip.com #amwriting". Thus read my first social media status update for 1 November 2011. I am feeling "OK" today and unlike many others in the UK, last weekend's time change seems to have helped me a bit with managing Spoonie fatigue, the pain.and brain fog notwithstanding. After a mad round of tweeting I managed to crawl out of bed and get going.

A well-meaning new-found long-lost relative from across the pond decided to comment on the Facebook entry; "truth is I'm strategic..." she wrote. "...the goal is achievable you have to trust yourself to make it happen."

This was my response:

Not being funny but - as someone who has complex health problems (physical disabilities, illness and mental health) all the planning, strategies and jolly hockey sticks cheerleading in the world cannot guarantee a result. That's just #Spoonie reality - we do what we can, when we can ... unfortunately more often than not it means struggling immensely to do not very much at all... I give myself these pep talks and try strategies every year for #NaNoWriMo but don't really care if I actually manage to submit or even finish... its just helping me to focus on my blog and get some things done that I've neglected.

The thing is, I really would like to achieve a National Novel Writing Month win; I've wanted to for the seven years that I've tried. It's only in the past few years that my increasing problems with concentrating, memory and ability had nothing to do with just being lazy and more than a bit to do with the severe clinical depression that went undiagnosed since I was a teenager battling the Bulimia I still struggle with from time-to-time on the cusp of 46. The added struggles with physical disability and invisible illness makes it even more challenging to get started or keep going even if I do. Even a simple post like this has taken hours, with many stops and restarts.

I am blessed for every day that I have to actually wake up and The Great Spirit willing, I will have many many more. Unfortunately (as I explained to the psychiatrist at my last CMHT check), every night I go to bed my head spinning with a few ideas of things to work on the next day. I make notes in my project books and smartphone when I can manage to not forget within a minute or two of having a scathingly brilliant idea. Then the sun rises and sets again without any of those things getting done. Thus is the vicious circle that constitutes my spoonie not #fitforwork life, day-in and day-out.

Unfortunately it is impossible to have a "normal" schedule. For those who would criticise that sentiment and make a "scrounger" comment; review my LinkedIn profile. Even if I hadn't had my previous career on Wall Street and in The City of London, the life I am forced to lead today still wouldn't be a lifestyle choice. I would gladly give up my need to have help from the State in return for good health and mobility.. I need help - in the form of a Careworker who visits a few times weekly so I don't have to go for months on end without being able to have a shower or shampoo my hair; someone who could take me to the supermarket and help with shopping; someone who would be willing to help me keep my flat tidy and make sure I don't ignore the brown letters of doom from the DWP; someone who would be willing to prepare meals that aren't burnt beyond recognition and make sure that I eat them; someone who could actually be a Lovely Carer (tm @BendyGirl) - which would help me immensely.

I have big dreams and small; and yes, a little fame as a writer and campaigner wouldn't unwelcome. But as Lydia Grant used to say in the opening of the Fame television series: "Fame costs, and right here is where you start paying - in sweat". Like the majority of people in my situation or worse - I'm not afraid of hard work and never have been. The relentless onslaught against disabled people from politicians, government bodies, general public and media takes a toll on my health. This, along with the  lack of Care in my daily life and constant worry about my finances, needing business help and having to move house again etc, makes something as "trivial" as trying for a NaNoWriMo win feel like trying to go up an icy hill alone on rollerblades. I may fail again; but in the words of Bob Hoskins in Maid in Manhattan, what defines us is how well we rise after falling.

I may be disabled, but I'm not dead yet.

Lisa J. Ellwood

Disability & Mental Health Campaigner

The Broken of Britain

Cross-posted from The Creative Crip Blog

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My Working Life - #fitforwork

 Today, The Broken of Britain are asking you to take part in our awareness raising campaign about fitness to work, all details here 

My fellow benefit scrounging diarist Sue Marsh has also written a post about her working life, and if anyone would like to do the same, please let us know and we'll add it to our links list over the w/e. 

 

 Employment History (originally posted here) 

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.

Fit for Work #fitforwork

Below is a selection of "Fit for Work" tweets from the last couple of days.  People were encouraged to tweet the usual and the difficult parts of their day with the hashtag in order to show what life really can be like for disabled people and how the WCA is failing people.

These are just some of the tweets - chosen completely at random.  To view the hash tag click on #fitforwork.  Names are twitter names, but not linked due to the time and effort that would take but should be searchable on twitter.


I chose a "pretty" bowl as my sick bowl because I spend most days with my head in it #disabilitynormal #fitforwork http://t.co/flG6At - KimbellyBull

I'm #fitforwork but am out of the country caring for my #disabled dad 2 weeks of every 4. Employ me? - Gavroche2000

Even though you're tee-total, you sound and look drunk. Always a good look for potential employers.#fitforwork - Lou_Lou_Bird

If you ask me how many sick days I took in my last two years of work and I write 3 months+ will you employ me? #fitforwork - HellsBells265

I know I have a lot to offer a potential employer. I also know I will never be able to offer it in a work setting and the number of people who think this is somehow evidence of "low self-esteem" makes me really angry - ksej

Have spent the entire morning either crying with pain or stuck on the loo.  - Sharon_J

My wife has gone to get food. I'll be lucky if I eat half of it. Fortunately employers don't mind workers being constantly hypo - JulianYon

I don't know what time I can get to work and I will need a rest when I get there.  - LatentExistence

Numbness in my hands and fingers now, and shoulder pain. Really wants my bed! Any boss would sympathise right? #fitforwork - LongDogFerret

Guessing employers don't mind that you can't sit still or concentrate for more than a minute when the pain's driving you mad - Sharon_J

In order to function I take (prescription) class A narcotics. That's OK in the workplace, right? - LatentExistence

Listening to 5 playing telephone: "Daddy feels poorly" over and over. :/ -- #fitforwork? - JulianYon

Two Hons degrees..unable to recall colleagues' names,where they sit, office postal address etc 3 months into job. - GentleChaos

talking frequently induces 'choke-until-you-vomit' (sorry if TMI!) - StickmanCrips

I can't lift the full bottle of milk or full kettle to take my turn making tea. Co-workers won't mind, right?  - BatGirl

pain clinics, skin reactions to the lights in the office, son attacking staff - time off twice a week ok with you, then? - LonAitewalker

People asked my opinion, always included me, and never found me #boring when I was #fitforwork - longdogferret

Have just changed the bedsheets. I am now completely exhausted and wanting to crawl back under them.  Additionally, having to spend the day in my dressing gown as my skin is too sensitive and sore for clothes today. That's #fitforwork, right? - Mazzlestar

If a co-worker were to take just one of my pain pills, it would shut their brain down for a month (assuming they lived). - AdAstra45

My powerchair took almost 3 weeks to be fixed. I've had it back 10 days. It's making scary bad noises. - FunkyFairy22

I cant sit, stand or walk for long, got any jobs I can do from my bed? - HovellingHermit

I hope you won't mind finding me a clean area so that I can set up an aseptic trolley and hook up to an IV line when I'm dry. #fitforwork - Sharon_J

Just had my new manual wheelchair delivered. Anyone want to push me to my government allotted office every day? - QueenieJelly

"Can you explain why you're always 'sick' on Fridays?" Erm, because I've worked while sick for 4 consecutive days. - JulianYon

Of course when I struggle with mental health, I won't have a manager who think she's lucky as 'she can leave things at home' - HellyCopeland

PA took me to the docs and chemists. Regular health-related stuff during office hours shouldn't be a problem if you're #fitforwork - Batsgirl

"You do know your eyes are pointing in different directions, don't you?" #fitforwork - BendyGirl

keep walking outside whatever the weather's like because my brain doesn't like the artificial lighting, #fitforwork - Robbsart

I  know that you can always vomit just one more time #fitforwork - Suey2y

Can't move well enough to dress myself & no help today. Can't reach up to food or microwave so surviving from fridge - Bekijane

#fitforwork lose effective use of your left side if you get too hot. This lost me my last job cos they refused reasonable adjustments. - StickmanCrips

I'll take an hour for a toilet break to wash my hands, then get stuck in the toilet because I can't touch the door #fitforwork - Aliquant

When i was #fitforwork i didnt have to go to a shop & buy something in order to have contact with another human being - Opinion8ed_dyke

I'm lucky, I am #fitforwork cos I found work #fitforme . - QueerPup

Being #fitforwork is a privilege. A sensible society embraces everybody, including those who cannot work. - KindJourneys

You can be #fitforwork one day and unable to work the next. Good health is fragile and not guaranteed; it could be YOU next. - HovellingHermit