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The Shock of the New (Year): a Change of Direction

January 7, 2013

I’ve noticed that, after a certain age, New Year’s resolutions rather lose their appeal. However, the period of enforced merriment and un/happy families does require one to focus briefly outside the usual box. The ensuing return to normality can give a new perspective to old dilemmas. And behold – thus it was for me this time around.

It may have been apparent from my last post (in mid-December) that I needed to review my situation regarding how much work/writing I could continue doing. If I was in any doubt about how much I could do, the last few weeks have been uncompromisingly clear. My physical and emotional stress levels were high and this culminated in a severe relapse of my ME/CFS  symptoms. The pain was the worst I’ve experienced outside surgical situations and the level of weakness/neuropathic distress so extreme that, on one day recently, I was in a state of almost total physical paralysis. While this is not uncommon amongst patients with the most severe form of ME/CFS, mine is not usually quite that bad.

Inevitably, this recent episode has forced me to accept that I need to do things differently for the foreseeable future. The inescapable truth seems to be this: if I do anything else, I can’t write much. If I write regularly, I can do nothing else. There is so much I want to do that this leaves me pretty much stuck with the options of either 1) trying to maintain my blog and not achieving anything else or 2) pursuing my tentative plans for academic work/health campaigning but not blogging unless there is news of particular significance.

When I started drafting this current post, I discovered an abandoned draft from early December 2012 entitled “Four Levesons and a Funeral”. I was developing ideas for discussion over a range of issues. In the event, my energy levels have been so poor since then, that I had simply forgotten that I had even begun the draft.

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I never actually planned to start writing a blog. I set it up in August 2012 as a way of publicising my work on the “Secret Files on ME/CFS” (see posts from August and November 2012). My research was not complete at that time but there was some incorrect information about the files which was circulating on the internet. I needed to address this and so I responded by setting up this blog. Having started it, I wanted to preserve its momentum and maintain my relationship with those of you who were interested in reading it. I also wanted to continue discussion of the issues described in the sub-heading above, in addition to creating an information resource both for myself and others. However, I knew that this would be a tall order for someone with such limited energy resources – and so it has proved.

Clearly, I cannot carry on over-stretching myself in this way so I’ve had to come up with Plan B. I am not going to terminate the blog but I will only write on an ad hoc basis as and when I have something important arising from my work regarding the treatment of ME/CFS patients or other significant event. That work has ground to a complete halt recently because I have overloaded myself and, in so doing, probably damaged my health even further.  It is the same story for most campaigners who have this illness which is why it is so hard for any of us to bring about change. Any successful campaign has to be sustainable by its activists but by its very nature, ME/CFS inhibits real progress.

I am feeling slightly better now and recovering to a more “normal” level. I will take the next few weeks to review my situation in terms of campaigning, writing and pursuing my much-neglected academic work. I greatly value my relationship with all of you who have taken the trouble to read my posts, whether it is as a one-off or on a regular basis. Revealing personal information about myself does not come easily and occasionally I go into a complete meltdown about how much I have said. However, if I don’t do it then I cannot expect others who do not have experience of this illness to understand any of the challenges which I, and so many others, face on a daily basis.

Some bloggers/campaigners avoid this extra stress factor by remaining anonymous and, although I completely understand their reasons for doing so, I think that this reduces the impact of the message. No matter how difficult it is, I believe that being accountable for what I say is an integral part of the process; nevertheless, in my darkest moments, it is terrifying.

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For the time being I’m going to accept that I need to stop writing and concentrate on doing whatever else I can to bring about change. It’s been a very difficult decision but I think it’s a no-brainer. In the meantime, I can be contacted via Facebook, Twitter, LinkedIn or Google+.

I wish you the best 2013 that you can possibly have. Thank you for reading past, present and (hopefully) future posts.

2 Comments leave one →
  1. Janet permalink
    January 7, 2013 16:37

    Your blog expresses the frustrations of living with ME so eloquently Valerie. The grief of loosing our past, the fear of looking to the future and the reality of here and now. Suddenly the balls that you were more than capable of juggling in your prior life, crash to the floor as you ride the emotional and physical roller coaster which is ME. The longer you battle the physical aspects of this illness you realize there are political issues that cannot be ignored. However, the energy involved in making sense of ME never mind participating in any advocacy is draining. Your blog is inspirational, it connects with those who are ill and gives others an insight into our world. We will look forward to sharing your thoughts in the future but your health must be a priority. Take Care.

    Like

  2. January 7, 2013 17:32

    Thank you so much, Janet. If I really am able to “connect with those who are ill and give others an insight into our world” then that is everything I hoped to achieve with this blog. I feel very honoured by your words.

    However, as you say, “the political issues cannot be ignored” – and that is the problem. I hope to work a little more on that now but the prospect is daunting and the frustration is sometimes overwhelming. We must all continue trying to work together and maintain hope for the future.

    You take good care too.

    Like

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