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*I just found this in my Drafts folder, written in November 2009! Might as well post it now. I decided not to watch the film after writing this, as the reviews were SO bad.*

I have just finished reading The Time Traveller’s Wife by Audrey Niffenegger. I have read it before but I recently decided to read it again, partly because I am sending it to a friend and wanted to refresh my memory of it, partly because I loved it so much but my memory of it was getting hazy and the film has been made and before I rent the dvd I wanted to make the book firm in my mind to protect it from being ruined by seeing the film (the books are always better than the films, eh? But the film version can erase our memories of the book). Also I was listening to the BBC Ouch! podcast and they mentioned how it is basically a book about living with disability. Although I had got that the first time, I have been thinking about disability a lot more since I first read it and wanted to read it with that in mind…

Well, even though I had read it before it did not dilute the enjoyment, awe or emotional response this time around. I love this book!

I am not going to talk about it and spoil it for people who have not read it yet (including the friend I have promised it to, who will read this) but I would like to say that it deals with issues of living in a differently-abled body which behaves in unpredictable and unconventional ways (er, time travelling! As Ouch! said, it makes you wonder what will the disabilities of the future be?) and this is presented as a genetic condition. The book focusses on him living with this condition, trying to control his body, trying to be cured, effects on reproduction and relationships.

I really liked the way that his wife’s experience was so sensitively written. As anyone living with/caring for someone with an impairment, she experiences the compromises she has to make by association, how almost everything in their shared life is dominated by his condition, how she also has a different relationship to time and misses out on a lot of normal life experiences due to being in that relationship. Time is experienced differently by them both, not just because they are affected by time travel, but also due to the limitations brought upon them by his medical condition: living with disability. They both live for the good bits even if they are still compromised and always affected by it. There is a sense for him of not being entirely present in the present and feeling he is missing out on life, by thinking about other alternate times. This is something that I can relate to as someone with chronic illness who occasionally wastes time thinking about what I could be doing if I was better, rather than making the most of and appreciating what I am doing/can do now.

More than this, the universal themes of aging, embodiment, death, love, grief and loss are so movingly written I defy anyone not to identify with something in this book. Also a major theme is waiting. Waiting for better times, waiting for love, waiting for things to make sense. Who isn’t waiting for something?

Well, it is the end of February. One sixth of the year has disappeared and it has happened pretty fast. I do know where it has gone, I have been working on my Disability Living Allowance form for most of this time, when I have been up to it.

This form has taken over my life, along with appointments with all the medical professionals involved in my care to ask them to write supportive evidence for me in support of my application and also to talk to them about what is needed (as usually knowing about my medical conditions does not mean a doctor knows about how it affects me personally, which is what the benefits people need to know).

Last time I got help from a charity as it was the first time I had applied and had little idea what was required. This did help a lot in terms of energy for filling in the form, though not the outcome. This time I have largely filled it out myself, which with my physical and mental stamina has meant it has taken me a very long time. My partner has helped me type some parts and has physically written up the form, as well as checking what I have written and suggesting things I have forgotten, and that help has been really helpful but she is so busy that I could not ask for more and frankly, I am the one who knows the most about it and how it needs to be done. She could have gained that knowledge but it just seemed above and beyond to ask her to do that on top of everything else she has on her plate.

I know that my facebook friends and others are probably sick of hearing me talk about it as I have vented a little during the process and all will be relieved to hear that it will be sent off this week! Hurray! I cannot wait to see the back of it though I know that next time I hear anything it will be a request for a medical, which last time I found VERY traumatic and lead to the denial of my claim and I had to go to appeal. The whole process took a year. It was successful in the end, but I am really not looking forward to that all over again. It really takes over your life and energies and it was a hard year for me. I have filled this form in so thoroughly and carefully in the hope that it will go through and I can avoid that year of hell this time. I am crossing everything but I know that just about everyone with ME goes to appeal. Even my CFS specialist said so, so I should not get my hopes up. I know that so many people are going through benefits processes and appeals at the moment, the whole UK system is in a mess and people are being treated so unfairly. It is really inhumane.

Anyway, two months of my available energies have been used up already and I really want to use what I have now for better and more creative things. I have several new arty books from Xmas that I want to look at for inspiration as well as projects I have been planning for months (actually years) that I want to get on with. I also have a lot of fiction/non-art books that I want to read – I love having a pile of books waiting but at the moment it seems a little too high and I keep dipping into new ones before finishing the ones I am on! I need to focus on the ones in hand and ignore the temptations of the bookshelf or I will not fully enjoy each one as I go as I will have half an eye on the next one – no way to be!

One of the best things to happen so far this year was a couple of weeks ago I went to see The Imagined Village. I have seen them before and knew it would be good, but it exceeded my expectations (except it seemed to be over far too quickly) and it was a night to remember! I always love to see Eliza Carthy live, and they are all such talented and enthusiastic performers that it is a real joy to see people doing what they evidently love. There are more concerts planned by them and other related artists to raise money for Norma Waterson (Carthy) and family who is Eliza Carthy’s Mum and who is very ill in hospital. Details here.

Other news, my sister is coming to visit me this week! I have not seen her for nearly two years and I am looking forward to some fun! Also my garden is coming back to life after all that snow in December and I am feeling a little hint of spring in the air… I hope to be able to get outside a bit more soon.

Also interesting to note that though I don’t feel dramatically better, I feel that my condition is more stable in terms of energy at the moment. I do not seem to have much variation even after I have been to an appointment (or been to a concert!). I do still get post-exertional malaise, but it is not as severe as in the past (relative to my overall function levels) and I am finding I am getting more pain instead, if anything. This change is actually welcome. (I think one of the worst things whatever level of function is the unpredictable and ever-changing nature of this illness and not knowing what is ok to do and what the day will bring). I do rest more before and after an event and I am careful in what I choose to do and cannot go out often, but I feel it is not such a big risk to go out occasionally. I don’t mind taking more painkillers occasionally for a good reason. I think my wheelchair is helping me not have such a dramatic reaction to being out, and also perhaps my Alpha Stim and Acupuncture are helping me. I am sleeping better in general and I think this has a lot to do with it. My nerve pains are also more under control with the Gabapentin dose I am on and this of course helps a lot. Anyway, it is nice to have some calm and I hope it continues like this a while, especially if it means I can do some nice things at home and pop out a bit more. I could do with some fun, and I am sure I am not the only one!

I don’t think there is much to say about this illness anniversary, only that now i have started counting the years it is hard to stop… it seems to mean something, though i am not quite sure what. Time served.

I wonder at what point i will stop counting / lose count / forget to count…

(Maybe counting is good after all).

ME/CFS Awareness

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