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I think I need to declare a break from blogging, or perhaps change the way I do it. I find I am really only blogging for myself these days, to remember what happened and when, with regard to appointments etc and am not having time or energy to blog about more interesting things. I am also rarely reading other blogs as I cannot find the time or energy for that either. I will leave my blog public for now, but am even considering just keeping it private, or taking it down. I am not sure.

I find I am spending a lot of time on facebook talking to other people with ME and other chronic health problems and that has replaced blogging a bit for me, despite having met most of them via my blog! Perhaps it has served it’s purpose…

Anyway, thanks for reading this far and Happy Solstice, Season’s Greetings etc.

Thank you Cusp, of L’ombre de mon Ombre for nominating me for a Happiness Award. I needed a little cheering up on this grey old day – a happy side effect there!

The rules of the Award are:

– When you have received this award you must thank the person that awarded you this in the new post.

– Name 10 things that make you happy.

– Pass this award onto other bloggers and inform the winners

So, TEN THINGS THAT MAKE ME HAPPY:

  1. Going out and experiencing some Nature.
  2. Staying in with my Love (that’s handy, eh?).
  3. Being creative & having ideas.
  4. My friends, especially if i can get a hug in person, which is rare but treasured.
  5. Being part of a community online and talking to lots of lovely people.
  6. Reading a good book.
  7. Feeling able to get stuck into something stimulating; a programme, a discussion, or learning something new.
  8. Having a good day when my body cooperates enough for what I want to do.
  9. Laughing – seems obvious, but the opportunity for a good laugh creates yet more happiness I think!
  10. A nice cup of tea drunk while my dog wags her tail at me (yeah I know, cheating on this last one, I couldn’t decide!)

I would like to give an award to Blue Coffee Mug as it is her birthday soon and she is simply amazing and wonderful and gives me much happiness; to Amy S who i know reads this blog and would like to blog herself but has not been well enough to get started for a long time now, but whose blog i would love to read one day; and Geninne’s Art Blog as I always enjoy seeing her colourful birds in particular, which inspire me to keep trying to do more creatively.

I have been watching a BBC4 series called Dear Diary (still available on iplayer until 25th January i think, for those of you in the UK).

I have found it very interesting. The first episode was with Richard E Grant, the second with Mariella Frostrup and there is a third and final programme this week.

I use my diary every day for organising myself but I have never written a diary in the sense of writing my deepest thoughts every day. In times of stress/emotional turmoil i have found that writing things down just for myself to be of great benefit in making sense of my emotions. Sometimes there is no-one who will listen, or who you think you can be completely open with but the exercise of expressing (literally getting it out) onto paper is still useful, even if it does not come back with a hug and reassurance!

 Of course, there is this blog – though not like a diary in terms of a private, no holds barred account of my life – of course it is a diary of sorts. I thought about the points raised in the programmes and why i write the blog, what i gain from it and what the intentions are.

One reason discussed in the first programme was loneliness. A diary is someone to talk to. In the second programme they talked about Anne Frank’s diary and how she calls it Kitty, as if she is talking to a friend.

In the second programme Mariella raises the question of self-obsession. Are people who write diaries self-obsessed? This is something i struggled with when i considered writing a blog. It is a bit arrogant/egotistical to write about your life and expect people to be interested? What were my motives? Did i have anything useful/interesting to say?

I would say that yes, in some ways you do have to be a bit self-obsessed, but as someone with a chronic illness that is all i can be. It is impossible not to be when you are stuck with yourself, and your daily concerns and “work” (it is hard work) are to do with managing your self and body, trying to cope in a private adversity that those around you are affected by but cannot directly share in. I do not think i am special, except in the sense that we all are! I see my self obsession and all the management i do of self and body not just as survival for myself but also an exercise in minimising the negative affects on those who live with me and share my life. There is a sense that our life revolves around my needs, just because I have more needs as a disabled person. This is something i struggle with, but i know i should not apologise for, as i cannot help it. I do what i can. Also, honestly, everyone is a bit self-obsessed aren’t they? If you listened to people’s thoughts rolling through their heads i think most would appear that way at least some of the time.

As for blogging about my life with illness, I think there is a community and a sharing of experience that makes blogging not self-obsessed. Sometimes it really helps to read what others are going through to snap us out of a moment of self pity! It also helps with the loneliness of feeling outside of mainstream society.

I also think that blogging about living with chronic illness is not just saying “here, listen to my marvellous brain talking to itself” or “see how hideous my life is, i am in pain, pity me”; it is giving a voice to our lives and experience. We may not feel that we have this space anywhere else. Our lives seem invisible in the context of wider community. Our experience is misunderstood. For me it is also about reaching out and connecting with others that i cannot do in person. Being among others who share our experience, at least in part.

I would go further and say that this blog is a chance for me to document the truth as far as i can make sense of it: my experience of my own body and illness. I feel that i am constantly being monitored, being judged, graded and assessed by the medical profession and by benefits-related people and processes. I have to interpret my life and symptoms to fit the criteria deemed as acceptable, squeeze myself into the little boxes and simplify the truth. Things are being written about me on a regular basis! Letters fly from one department to another stating various “facts”. I also feel judged by people i meet in everyday life. “You look so well”. Hmm.

The second programme also talks about diaries written by people fighting in wars and those in concentration camps. The urge to write down and document their experience so strong that people have written on anything that was to hand, to make something that might outlive them, making a claim to existence, saying “i was here”; to not be forgotten in the face of death. It is bearing witness to what they have suffered, and documenting events that should be known.  It is a testimonial and giving value to each life. Each voice. When our personal experience becomes political maybe this urge is even stronger.

I think it is human nature to make a mark, to change something to show we were there, that we exist. We carve our names in benches and desks, we write graffiti. I would love to be published, and i think many people who have been feel a sense of having left something to be remembered by. Proof of existence. Maybe when faced with our mortality we cannot help having these urges. Chronic illness may fit into this category. Our relationship with our bodies changes and we perhaps see life differently. I feel there is a sense that it is political as well as personal, and that also drives me to document my struggles. I am here.

The extension of asserting our existence is being understood. As Mariella says in the second programme, as good diary can take the minutiae of life and make it universal; make it meaningful to others. That sounds very compelling to me and i have the urge to read some diaries! (Published ones of course…) Does anyone know of any good ones to recommend?

ME/CFS Awareness

ME/CFS Awareness

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