“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.