Sunday, 5 June 2011

Where Dreams Go To Die

I was asked on a forum what had become of my previous 'dream' of providing a comprehensive manual for others with M.E.

It's a subject I have largely avoided discussing with anyone other than my closest friends lately because I felt a sting of embarrassment at my own initial enthusiasm and subsequent silence. I am a perfectionist by nature and don't cope well with failure.

However, I am presently engaged with some pretty heavy work surrounding my own existence. This has led me to a more peaceful place, a place where I can more readily embrace the uncertainties of life and the uncertainties of M.E. It has led to some 'brave' but scary discussions. Some with others, such as officially ending a 7 year relationship, and some with myself about how I cope (or don't) with being unable to always control and fix everything.

So, I think it's healthy I share my response to that forum post here. My embarrassment and guilt about not being able to follow through on my initial plans are now more tempered by realism and a focus upon getting myself in a good place spiritually before I try to work out how best I can be of service to others.

Hindsight is wonderful, as we all know. More importantly, experience is valuable if we keep learning from it.

I think I was the epitome of a relatively newly-diagnosed person who had never really encountered a situation as unexplained as M.E. before. I, rather naively, felt that there must be a way to beat this through brainpower, research and determination. Being skilled at running before I learn to walk, lol, I also decided I must do something for the greater good. I must channel what energy I had into helping others.

Looking back, this was misguided, although well-intentioned. Greater minds than mine have been wrestling with the puzzle of M.E. for many years and it now seems a little foolish to consider I was going to avoid being a statistic and get well again through my own abilities. A very wise friend of mine said to me recently that I would benefit from "stopping being a knower and becoming a learner" - this is sage counsel indeed.

I still have an ambition to do something of real value for others. I just have to be more realistic about how I can best utilize what skills and energies I possess. But yes, my focus has had to shift a little from the community to myself. Not because I have become more ill or because I have become more selfish but because I now realise that I was avoiding dealing with my own lack of control over this illness. Coming to terms with the fact I cannot cure myself and there is no missing formula that everyone else has missed all these years is difficult psychologically.

The past year has been a rollercoaster of emotions for me. I have sulked, I have mourned, I have raged, I have argued, I have spoken my mind when my thoughts still weren't clear and I have argued with and upset people I care about. So much of this seems tied to my own need to accept 'what is' without giving up hope for the future. I am therefore working a lot more on my spirit and considering the more philosophical approaches to dealing with illness.


  1. Very well said Barry! We are both in pretty much the same place in many ways. The reality is we do have to "accept 'what is' without giving up hope for the future." Soooo true. Just hard to wrap my head around, yet I know that is HAS to be done! I was going to take down Metlife, change the ERISA laws, cure myself, deliver a comprehensive treatment/approach plan (via Dr. Lapp) to family practice and internal medicine docs & be an advocate for others who are being treated so unjustly. LOL....always an optimist with a warrior princess attitude. I'm still going to do something that makes a difference. I'm just not sure what, how or when it will happen. I'm coming to realize that if I don't take care of myself, there will be no hope at all to help anyone else. I still seem to have selective memory on too many days!

  2. your ability to develop so rapidly is amazing! what a wonderful post which i am certain will help many newly dx'd. i certainly fell into the same idea of 'i will find the answer' that you did, but your openness and honestly is a gift to many who shall-sadly-come after.
    i am honored to be able to watch you continue to grow and challenge yourself. i am thanking the powers that be that you are focused on the more 'philosophical approach.'
    much love braveheart!!! xx

  3. It's interesting that many of you 'newly diagnosed' (in the last few years) have taken this approach. I at the start, literally slept for two years. When I was awake for the six hours, it was like being blind drunk and being woken up from a deep sleep and you can't remember anything. So for me, this instinct didn't come until much later.

    I truly believe the only way to achieve anything for us, is either painfully slowly, or collectively. You should speak to Lee Lee, he has a brilliant idea about a website with source information, that all of us could contribute to. Perhaps with us all doing a little we can achieve both of your goals?

    Never be hard on yourself that the ever-changing emotions, reactions and situations that CFS/ME as a catalyst for, causes in you. It is like being on a expedited course of learning about yourself, there is no escape from it, so we grow quickly under the weight of all the challenges.

    This life is extraordinarily hard, you needn't be hard on yourself too.


    After my blog post, and reading your comment, I wonder if some of those traits are a result of our childhood experience? I am the same, I am a perfectionist. My sister was going to start a charity for us, but she ran out of steam... but she had asked me to ask others what they needed/wanted. It mortifies me still that I got their hopes up and couldn't deliver.

  4. It's amazing to me what a quick learner you are Barry. Those of us who fell ill in the '80's believed the false rhetoric that we just had to learn to adjust and that most PWC's got better. Consequently, we hopped on that merry go round trying all manner of things and blamed ourselves for our own lack of progress. Your insight has value to many on their own journeys and I always enjoy what you have to say.

  5. Hi Barry

    This is a very courageous blog you've been writing. In some ways you have possibly been too open about things. You don't owe the world an explanation for anything! You wanted to help people in a similar situation to you. Well i've got news for you. You have helped.

    It is easier to cope when you know others have had similar experiences, thoughts and fears. I must admit i thought you should not try to collate all the info for people as i reckoned you'd be better off focusing on your own health. The people who i've heard of, that make significant improvement do so within a couple of years of being ill and usually have accepted the limitations of this illness. Personally, i pushed myself too hard and too often, as soon as the slightest improvement in symptoms appeared. Also, i have taken a lot longer to deal with (or even contemplate) some of the issues you have been talking about recently. I think you're doing alright but you should go easy on yourself. Don't give up your hopes and dreams but please don't hurt yourself trying to achieve them too soon.

    Best regards
    ps sorry to hear that your realationship ended.