#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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Rohan's Story*

Never before have I been so aware of myself, my strengths, happiness and many faults, as I was this morning on Sunday 10 October, World Mental Health Day 2010.

There are so many misconceptions and myths surrounding mental health and depression, and they add a stigma which so often perpetuates the issues, and actively instil fear in those that might otherwise seek help.

For those who consistently tell society that sufferers can just ‘snap out of it with willpower’, I have nothing but contempt and pity, for as they have judged others so too will they be judged.

Depression and mental illness is not just ‘in the head’, as some would claim, but is a very real illness with potentially devastating consequences.

Women are more likely to suffer from depression than men, 1 in 4 women will require treatment for depression at some time, compared to 1 in 10 men. Men are far more likely to commit suicide, this may be because men are more reluctant to seek help for depression or it may be due to other factors including substance misuse, unemployment and social isolation

~ NHS.UK

I cannot speak from a medical perspective, but can certainly do so as an individual who suffered from depression for the best part of ten years, a period which could and should have been a fraction of that, had I sought the assistance available to me.

Before I continue, I must emphasise that there is no blame to any of the circumstances surrounding my symptoms, but only on myself for being too proud and stubborn to either recognise or, more pointedly deal with them.

At the age of eighteen, I had had opportunities beyond what many would consider as reasonable. My parents did not have much, but had made every sacrifice to give me a first-class education and to nurture my sporting talents, particularly in cricket.

Two years later, I had become a man, far before I was ready to assume such responsibility. There were several underlying circumstances, not least the divorce of my parents, but most pertinently that in not dealing properly with that, I had turned to the bottle and turned my back on cricket altogether.

Don’t get me wrong, I was never an alcoholic that needed his first drink at 7am, but I was often to be found at the Student Union bar from lunchtime, often not to leave until the dying embers of the evening. Believe me when I say that is NO life for a young man just out of his teens.

The spin-off was that I ostracised and hid away from true friends because they are the ones who would tell the truth and would try and get me to seek help. We surround ourselves with ‘yes men’, none of whom truly care enough to disagree with us.

Denial turns to frustration, which turns to anger, out of which eventually emanates self-loathing. At this point, life no longer holds any type of value.

Life, at most points, was the same as that of anyone else, but an ‘episode’ was seldom distant. It is very difficult to describe the emotions and the constant shifts. It was almost as if there was no middle-ground, just moments of extreme happiness intertwined with dangerous lows, best described on a site that I discovered today:-

These destructive patterns of thinking seem to be connected to a “switch” in the mind of a person who struggles with depression. Certain “triggers” seem to “trip” the switch, causing a flood of hopeless and self-loathing thoughts, which then ignites the embers of depression into full-fledged flames.

Triggers can be anything that trips the switch, such as being criticized, having an argument with a spouse, losing a job, flunking a test, making a mistake, becoming ill, being denied a promotion, feeling rejected, raising a difficult child, having a bad day, experiencing a loss or disappointment, having a financial setback, and so on.

~ Source: Serenity Online

During this long period, there were times when the switch would not be tripped for over a year, but I always knew that it might not be far away. I lost a lot of friends during that period, and am eternally grateful to those who have stood, and continue to stand by me.

It was Saturday 14 January, 2006, the day on which I started to live again. I woke up that morning in St Mary’s Hospital, Manchester, at the age of 31, as a man with a past before he had even begun to explore his future.

By that point in my life, I had taken two major overdoses, and shamefully managed to acquire myself a single record, the type which is not available in HMV.

I know that I would not be here today, but for the intervention of Danielle, my late fiancée, and one of my closest friends Sally. Unanimously that morning, I was told that I was on my own and would have to face up to my problems. Dani simply said that as much as she loved me, she had to walk away. Maybe, it was tough love, either way it was indubitably my saving grace.

I moved back to Birmingham that weekend, leaving behind a life strewn with unpaid debts and bills, broken friendships, lies, anger and self-disgust. How on earth could I expect Dani to love me, when I was incapable even of liking myself.

Of course, there was one person, who had always loved me, despite the traumas to which I had subjected her, and that was my mother. She took me back in at that point, and I vowed to myself that the time for change had come.

I was fortunate to encounter a man whom I only knew for 6 months, but who had a dramatic impact on my life. My counsellor, who has sadly passed away, was the most positive influence on me, never reneging on the promise that he made not to be a comfort blanket. Instead he challenged me to start believing in and getting the best out of myself.

Make no mistake, this was not an easy process as baggage, for so long unattended, was carefully opened and constructively packed away into the past. It was a journey of self-discovery which has made me the person that I am today.

If there is a sole vindication of the positive changes in my life, it is that Dani took me back into her life, and that we were engaged to be married prior to her untimely loss last November. In many respects, it makes her loss all the more tragic.

However, any fears that I would find myself slipping towards any type of depression were confined to those around me, certainly never entering my psyche. I am a very different human being now, to the one which terrorised myself over a long period of time.

I am not too proud to talk about my problems – if this was the case, you would not be reading this. I am not afraid to deal with the challenges that life brings, and I cherish the gifts that we are given every day. I am surrounded by a fabulous group of friends and family who are not afraid to tell me the truth, and moreover, I am unafraid to listen.

It is because of where I have been, that I have absolutely no fear in where I am going. If I said that there were no regrets, it would be an untruth, but they are few and far between. My biggest regret is that I did not have the strength and wherewithal to deal with my depression before it had such a damaging impact on my life and on those around me.

For this alone, I implore you all to be more accepting of mental illness and depression, and not to attach a stigma to it. As an illness, it can have fatal consequences, and yet with the right support, it truly can be cured permanently. Whether you are reading this as someone who has or is suffering, or know someone that has, please do something positive to change it.

Mental illness is not just ‘in the mind’ but can have physiological and physical impacts, so we owe it to ourselves and those around us to do everything we can to raise awareness of it, and erase the ignorant myths and conceptions around it.

From a person who could not bare to look himself in the mirror, I am now a man full of life, hope, appreciation, and a better awareness of the feelings of those around me. In those moments of reflection and melancholy of all that has transpired, I simply remind myself of all the gifts I have had, and remind myself of the words of the Prophet Isaiah:-

“Fear not, for I have redeemed you, I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned”

~ Isaiah 43:1-2

However, you do not have to be spiritual to seek help, for it is available for all who choose to take it.

I have today written about things that have not been previously spoken outside my very closest circles. I dedicate this post to Danielle Antonia Price, my best friend and late fiancée, and to Pedros Kypridemos, an incredible man and counsellor. You both believed in me, and although you are not with me today, I feel you looking down on me and shining a light on me at every moment.

  *Reprinted with permission from Rohan Kallicharan  
   http://www.hetoreahamstring.me.uk/blog/2010/10/10/help-sometimes-the-hardest-four-letter-word/

My Son & I by Chaosgerbil

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.

Emma's Story

I’m a single woman in my late twenties who lives alone and dreams of being a writer. I have ten GCSEs most of which I got B grades for. I have three A’Levels and a degree. And I’ve never worked.

I have Cerebral Palsy (CP). That means I’m life long disabled and in my case I use a wheelchair most of the time. In 2003, I was also diagnosed with depression and I’ve spent most of the seven years since then on anti-depressants.

My income is Disability Living Allowance (DLA) and Incapacity Benefit (IB). It’s not always easy.

When I was 16 my DLA was transferred from being paid to my Mum to being paid to me. I was asked where I wanted it paid and I named a specific post office. They arranged for it to be paid into a different post office to the one I asked for. Because the one they chose was my closest one (and presumably because it was where my Mum had it paid for years). Never mind that it was a tiny village post office with no wheelchair access!

When I went to Uni I wasn’t eligible for some means tested benefits I could otherwise have applied for – because I had the right to apply for a student loan. Even if I didn’t take it I couldn’t have the benefits. I took out the loan and now have a lot of student debt. I’ve been told that if I ever work it will only be part time. And based on my fatigue levels doing a few hours a week of voluntary works I agree with those who said that. Realistically (and I do hate to say this) I will never pay it back or even reach the earnings threshold where you must start repayments. Yet, every year the Student Loans Company sends me a statement. It’s a continuing waste of money. I try not to think about my student loans if I can help it. There’s no point. I’m not in a position to do anything.

Once, I was asked to provide a sick note long before the previous one was due to expire. I phoned and queried why and was told it was standard procedure to check if I’d got better. I replied that I have an incurable condition. The person from the benefits office told me “Well, you still might have got better.” Very upsetting! But at the time I had a wonderful GP who was also disabled. It really helped me to deal with someone who “got” being disabled. His response was very verbal and I can’t print it but basically he had a suggestion for where they should be told to go.

Benefits being stopped because of DWP mistakes has happened to me a few times. Once they couldn’t even tell me why it had been stopped, just that it shouldn’t have been.

My condition means I will always qualify for middle rate care and higher rate mobility on DLA. It won’t ever improve so I’ll never be able enough for lower rate care. And I don’t anticipate my condition deteriorating to an extent I need higher rate care. To get IB or ESA you need 15 points on the WCA. I once worked out my score on the scale they use. I got 15 points on the very first question alone. And overall I got enough points for more than three people to claim IB. Yet sometime in the next few years I face being reassessed and moved to ESA. This worries me a lot. I think it’s probably an expensive, stressful and pointless waste of time for someone in my position. And then a few years after that a move onto Universal Credit. Another worrying and expensive waste of time most likely. The government think differently. So in an attempt to save money they cause stress, worry and fear, making people’s conditions worse and possibly even ruining lives

I belong to a Sailability group. One of our boats is called Spirit of Ivan. We were given it shortly after Ivan Cameron died and it was so named in his memory (with the permission of the Cameron Family). The committee wanted to call it that to honour him as “a little boy who will never sail her.” It’s not quite as weird as it sounds, although the Camerons have never been part of our group, we are the closest Sailability to Witney where David Cameron’s constituency is. By naming our boat for him we were also showing our support for his family. For the loss of one of us.

Now David Cameron is Prime Minister. I thought he understood what disability and being disabled meant. But he and his party won’t stand up for us. I am proud to share my story and be a part of The Broken of Britain. If no one will stand up for us, we’ll stand up for ourselves (even if several of us can’t actually stand!).

Rebecca's Story

Six years ago I suffered a breakdown and was diagnosed with depression
and social phobia (also known as social anxiety disorder). I was 17.
The most work I'd ever done was in the village corner shop - a few
hours every week for a whopping £3 an hour, and of course I never had
to pay tax or NI contributions because I was so young.

When I turned 18 I went quickly and rather trivally onto Incapacity
Benefit. I remember going to have a quite hideous interview in a
really unwelcoming building - at the time I was pretty much housebound
and only because I was driven there by my mum was I actually able to
go. Still, I got the benefits and received them until I went to
university a year later. Because of the benefits I was able to get
some private CBT (Cognitive Behavioural Therapy) which helped me to
overcome my daily panic attacks: but I was far from better; the
treatment I'd had was a temporary solution to a problem that ran much
deeper than just my panic.

University went by, and I racked up around £25,000 of debt along with
most other students. I ended up oweing my parents a good few thousand
pounds that they refuse to allow me to even try and pay back. Because
I was a student, I couldn't receive benefits, even though my health
deteriorated to the point of being placed on suicide watch and under
the care of a psychiatrist. It's possible that I could have been able
to get some disability allowance from my university, but I was never
offered it and wasn't in a state to be thinking about going through
what would have undoubtedly been a long investigation into some help
that wouldn't come to much.

When I left university, and finally started to get some proper
treatment from the NHS, I applied for the new form of incapacity
benefit
- ESA. Because it was three years since I'd been on Incapacity
Benefit, I wasn't eligible to go straight back on that and had to go
through the rigmarole of applying again. So I did the form over the
phone with a very helpful woman who was patient with me when I got
upset telling her why I couldn't work. I started receiving benefits
and a couple of months later I was summoned to Croydon for a work
capability assessment. My therapist told me that it would be fine;
there's so much evidence of my ill health (from both the hospital and
my GP) that it would be nigh on impossible for ATOS to turn me down.

Oh, how wrong she was.

For those of you that don't know about the assessment, here's how it
works: you have an interview with a health professional. It doesn't,
actually, have to be a qualified GP: or even someone who is actually
qualified to identify your illness. It's just someone employed by the
private healthcare corporation to tick boxes. To "pass" the test, i.e.
be judged unfit to work, you have to score 15 points. I scored 0. On
the day, I had three panic attacks; one of them right before entering
for the interview. I was in floods of tears during the interview,
couldn't lift my head up, and was shaking. The woman who interviewed
me was rude, impatient and harsh in her questioning.

Thanks to the help of my local branch of Mind, I now have a benefits
advisor who is helping me with my appeal and tribunal process. Amongs
the help he has given, he gave me a copy of the work capability
assessment for mental, cognitive and intellectual functions. He and I
went through this and discovered that I should in fact have scored
well over the 15 points required. These questions include such
statements as:

"Normal activities, for example, visiting new places or engaging in
social contact, are precluded for the majority of the time due to
overwhelming fear or anxiety" - that scores you 9 points.

"Is frequently unable to get to a specified place with which the
claimant is familiar without being accompanied by another person" -
that scores you 6 points.

"The claimant misinterprets verbal or non-verbal communication to the
extent of causing herself or himself significant distress on a
frequent basis" - this scores you 6 points...and by now, you get the
picture.

I appealed twice and eventually went up for a tribunal in March. They
have a target of seeing you for tribunal within 16-18 weeks: clearly,
it is far beyond that now. Not only have I continued to receive only
£50 a week, on multiple occasions - despite me managing to put in
regular sick notes - they have refused to pay me either on a seemingly
trivial basis or one that they did not make me aware of. For example,
I changed address; they refused to pay me for 6 weeks until I had
proof of address and a new sick note bearing my new address. In this
time I had to borrow money from my parents to avoid being thrown out
of my newly-awarded temporary
housing from the council, because it had meant that my housing benefit
application was declined.

I now receive full housing and council tax benefit (which will of
course change under the Condems' new plans, as I am only 23). However
my application for DLA was turned down on the basis that I failed my
ESA work capability assessment. For something that is meant to be
separate to ESA, this is pretty disgusting. With that money I could
offset the £10-£15 I have to spend on travel every week.

I have had to subsist on £50 a week - including whilst homeless - for
over a year now. That barely leaves me anything to eat, once I have
paid my utility bills, my phone and internet bills that allow me
contact with the outside world and my support network on those days
that I can't leave the flat, my transport bills which are high because
I have to go to hospital twice a week and cannot drive.

This, of course, is just the numbers. This is before we even get to
the stress and anxiety that my struggle with the DWP, with the
tribunals service, with the council has caused me. Not only do I
constantly worry about money, but I am dogged by one single repeating
thought: "Maybe I'm not ill after all. Maybe I am just lazy, benefit
scrounging scum. I've never made a NI contribution in my life. I don't
deserve this. I'm leeching off people who are better than me because
they get off their arses."

I shouldn't have to feel these things about myself. I shouldn't have
to struggle on and try desperately to scrabble together food. It
shouldn't make me burst into tears when, like this week, my boyfriend
doesn't just bring over dinner for the two of us, but enough food for
me for a week. I shouldn't be sacrificing my health, and more
importantly my chances at getting better, because I can't afford to
reach out to the support networks that I so badly need.

Yet, I do. And the reason that I've written all of this up is that I
know for certain that I am not the only one, and I want other people
to know that too; because if you're not the only one then chances are
you're not making it all up, you're not lying to yourself, and just
because your disability isn't immediately visible doesn't mean that it
isn't there every moment of every day.