#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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The Brain Fog #TBofBTT

I think I'm the only disabled person I know who doesn't refer to themselves as a Spoonie. It's not that I have anything against the term, and I can understand why people do use it, it's just that I never have. Probably because I'm too lazy to explain the concept to people, tending instead to say "I'm in constant pain and my body is working harder than most, both of which make me very tired". Subtext - I'm not lazy, and I would love to have more energy, so please take your judgement elsewhere!

The term Spoonie hadn't even come to my attention until I joined Twitter, and started speaking to other disabled and ill people about in less than fully functioning bodies. I'd always had contact with other EBers, but if we discussed our health at all, it was always specific to EB and it's complications (blistered eyes, blocked oesophagus etc). By speaking to my Twitter pals, especially those linked to The Broken of Britain, I started to understand life with a disability more than I ever had before. And though I don't call myself a Spoonie, one term took a figurative leap off of the screen and shouted "Yes! I actually exist!" - the Spoonie brain fog (search for #brainfog for evidence).

I don't remember having the brain fog until the end of my first year at university, though I'm sure I had phases of it before that time (my brain has done a fine job of editing my long term memory into snapshots from the past twenty-four years). I know I'm lucky to have gone that long before it hit me properly, but when it did, it hit hard. My renown loquaciousness abandoned me the instant I tried to write essays, leaving me slumped over the keyboard and close to tears, struggling to recall the sentence I had formed in my head ten seconds ago. It didn't occur to me that it was to do with the fatigue of living with a disability, and so I looked for causes for it; in the process I found a major hormone imbalance and was eventually diagnosed with long-term bipolar disorder, but the medications for each of those problems failed to clear the fuzziness in my head. So the sense of relief and belonging I felt when I saw that term, and that hash tag used amongst my Twitter friends, was almost palpable. It wasn't a failure in concentration on my part, it wasn't stupidity, or a willingness to let my perspicacity slide away from me, it was the result of living in a body that has to work its metaphorical socks off just to keep going every day. It sounds awfully self-pitying to explain all of the trappings associated with ones health problems or disability, and so more often than not, we don't. People around us see the surface, but they don't see the frantic paddling our bodies are doing beneath it. When you're born with a disability or illness as I was, it isn't any worse than developing one, it's just maybe more difficult to understand what is usual and what isn't, as there is no 'life before' to use as a point of reference. Though I wish none of my friends were ill or disabled, having their experiences to learn from has been a huge help to me.

After two short spells in hospital recently, I was checking my emails and realised that I had no idea what the ones from my The Broken of Britain cohorts were referring to, and yet I knew I should know. It's a sign of how easy it to throw a brain that is surrounded by the Spoonie brain fog off course - two days away from my emails, and I might as well have been living in a cave for a year for all of the insight I had. But although it still frustrates me, and although I still haven't really accepted that this feeling befuddlement isn't going to leave if I shake my head hard enough, I feel much easier now I can email TBofB team back, as I did last week, and say "I'm out of the loop". And they know exactly why that is, and they pull me straight back in.

NB: I wrote this after five false starts and lots of irritated tutting and cursing!

By Melissa Smith, TBofB. The original can be found here