Wednesday, 23 February 2011

Licking The Wounds

Sometimes it's necessary to retreat. To lick our wounds and admit we are fragile.

Lately, I have had to do just that. I had a birthday at the beginning of the month and have gone downhill markedly since then. I am confined to bed much more than I was previously (and even previously it was a lot!), I am unable to take care of my daily 'maintenance' tasks such as washing etc. I haven't had the strength to write to many of those who were kind enough to send birthday gifts and cards. I haven't had the strength to go back to see my doctor or to have the remaining blood tests done. I haven't even had the strength to have a telephone conversation with my own mother for the past three weeks.

I have had to abandon thinking about anyone other than myself. I haven't been able to do any work on the projects I was hoping would benefit the M.E. community and I haven't been able to support fellow sufferers in the various groups I am a member of. I haven't had the strength to take my pills some days.

All of this isn't said to gain any pity. I think there is a larger point I want to make. Actually, there are two, maybe even three!

Firstly, the personal aspect. A lot of my sense of self worth has always been dependent on my output. On what I achieve and on what I can provide others with. I am largely a rescuer by nature - trying to intercept and fix problems. The past few weeks have taught me how damaging that is to my health. I literally have the energy supply of someone who has congestive heart failure and yet I'm beating myself up for not being more supportive of others. That can't be healthy, if you excuse the pun.

Which takes me onto the second, more general, point. For all of you reading this - whether sick or healthy - do you also need to consider whether you are looking after yourself enough? I'm guessing the answer is "yes" for most of you. Please give it some thought as health is so very valuable, I realise that now. And, even if you are sick, the current level of health you have, however low, is also to be cherished and protected. Don't let well-meaning personality traits take that health away.

And finally, the PACE trials that have managed to generate so much worldwide publicity. Why is it that the mainsteam media are able to ignore most of the scandal and the meaningful biomedical research on the subject of M.E. but are so willing to swallow the dishonesty provided by a bunch of UK psychiatrists and a study that any fool can pick apart with ease? I must admit, I lifted my head off the pillow on the day the news hit, looked around me with despair at how widely it was being reported, wrote a grouchy post on Facebook and went back to sleep. So depressing. My guess is that the only way to counter this is to win the PR war. For that is what this is, in my view. The truth has become irrelevant. Most of the world take, without question, what they hear in the mainstream media as gospel. Only by accessing that powerful influencer of the masses will we be able to fight back.


  1. 'Dashing off' to put my head down on the pillow but just wanted to say, hang in there. With this beast, there is nothing better to do than abandon thinking about anyone other than ourselves.

  2. Take gentle care of my friend Barry, please.

  3. And Brangelina, I'm telling you. Their PR machine for CFS/ME. We're set.

  4. You can't help anyone if you don't look after yourself first. I type those words, I understand those words but I am so guilty of not taking the advice of those words. I am glad you have realised you need to back off. I am hoping this passes for you soon. I live day-by-day hoping for some good news. It has to come, too many people have a better understanding of this illness now. At first I felt angry that nobody had given me a diagnosis back in 1998, but now I am grateful that I didn't have a clue for all those years. I think the time for change is approaching. Just hang in there Barry. Love to see you pop your head up again but until that time take good care of yourself. xxx

  5. the PACE trials were a joke and I cannot believe biased results were published in the Lancet - they of anyone should have higher standards.

    And I know all about being the rescuer type. I did the Lifeline Counseling course and was rejected as a telephone counselor because of that trait. Counselors are not supposed to advise and get emotionally involved apparently. Anyway, it has become pretty obvious that ME/CFS does all it can to prevent us from becoming involved in people's lives until we can become less "others-centred" so it is time for a change.

    I hope you are well enough to pamper your SELF soon. Judy

  6. Really sorry to hear how poorly you are doing! I can completely relate to what you have said regarding self worth being reliant on your output and level of achievement ... I am exactly the same, and am also a caregiver by nature ... it's so hard to just sit and take care of yourself as the priority!
    The PACE trials even made it into the papers here and my goal for today is to write letters to the editors and urger them to assign a journo the task of doing some research and write a balanced story about the illness .... even though I should be resting and looking after myself first .AAARRRRGGGHHHH!!!! LOL

  7. how did you manage to get so wise about this all so quickly, exactly? so relieved just to hear from you, although not to hear how hard things have been. don't go racing into doing all those things you haven't been able to do too quickly. everything can wait, except for looking after you.

    like mel i understand all this intellectually and tell myself i will put it into practice. when i'm so sick i have no choice i do...but when things improve a little i'm off again back to old habits and trying to use every last morsel of energy i have left doing what i feel i 'should'/am 'expected' to (and also want to) for others. only been a couple of decades since it all started, so i guess i'm a little bit of a slow learner!

  8. Oh my dear. I'm so glad you have eventually been able to post (there were a lot of us getting worried by such an extended period of silence) but sad that you are so poorly atm. We've spoken about the rescuer stuff before so I wont go over it again but it does seem such a common trait amongst PWME and its SUCH a hard lesson to learn and to loosen the reins a tad.

    Rest some more and some more until you regain some strength.

    As for the PACE trials....well, same old same old. When you have the capacity it may be time for you to do something but for the time being, leave it to those who have more strength, leave the white horse at the door and put that lancet (pardoon the pun !) down