Waiting For The Answer

How do you cope with waiting?

Waiting patiently for the answer/cure/solution can be frustrating at least. In the case of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) the waiting is long, frustrating and painful.

Over the past few years much progress has been made in research into the condition with much debate over possible causes and treatments. But “research” is not an answer in itself, and isolated studies are but a step on the way to a bigger picture of the situation. The difficult aspect of this current research is that it has become very public and heated debate has ensued.

The good thing about the current research is that it has brought the subject into the mainstream media and into the agenda of larger research organisations. It has also brought about problems including unrealistic expectations of a cure/fix and  misplaced hope in incomplete research.

(For the interested  please study the research into XMRV from The Whittemore Peterson Institute.)

The research and the increased awareness is great but it does not replace the desperate need to manage the person with the illness here and now. Realistically any answer may be years away so what can help now?

If you have the chronic illness

White Island, Dunedin

  • Hold on to hope
  • Hope in itself does not change the status quo – but it does change your attitude
  • Learn to pace yourself – remember you are sick
  • Balance in all things
  • Get involved or contact support groups – where you can and if you are able
  • Learn to rest body and mind
  • Do not have a single focus on or about the illness or problem
  • Do what you can not what you can’t
  • DO NOT blame yourself
  • Distract yourself from time to time
  • Keep in contact with those who provide care for you (professionals/family/partner)
  • Have a good moan from time to time – get it out, just don’t dwell there.
  • DO NOT feel guilty for what you cannot do
  • Keep in contact with you medical support
  • Don’t be proud – ask for help if you need it

In the business community there is an increasing understanding of the importance of “work – life” balance, why should managing a chronic illness be any different? Although there are physical limitations on what you can do, there are things that you can do. You need to work out what they are, small things and simple things should not be overlooked.

The word “patience” can be a swear word especially when you want and need solutions now, but it is what is needed.

Everything can be taken from a man or a woman but one thing: the last of human freedoms to choose one’s attitude in any given set of circumstances, to choose one’s own way.
Viktor E. Frankl

If you are not coping then you need to get help! If you are battling with your state of mind  seek help (professional help if required). If your circumstances have changed due to chronic illness then you need support. Do not think that you can do it alone.This applies to all affected people, including the person who is unwell and their partner/family.

Paul S Allen

St Kilda Beach


About Paul S Allen

Musician (Guitar, Bass, Mandolin); Singer Song Writer; Photographer; Poet; Thinker. I have food allergies so ask when you invite me for dinner. Lumen accipe et imperti. (receive the light and pass it on) Leadership; Strategy; Vision;

Posted on 27/12/2010, in Community, Health, ME/CFS and tagged , , , , . Bookmark the permalink. 6 Comments.

  1. Hi Paul!

    I agree with everything you said – especially the part about hope. It’s essential! In my opinion anyway 🙂 Hope you and your wife had a lovely Christmas!

  2. Kathryn Stephens

    Very good advice, Paul…thank you so much. I love the Frankl quote, have used it much to myself, but will share this on my FB Wall.

    I thought I was going to have a seizure with the dots falling all over it, though; could you remove them? I think maybe it will keep others from reading it.

    Happy New Year to you and yours!

  3. Gale Allen

    Thank you very much Paul. I love the part about hope.
    I am still trying to learn to pace myself.


  4. Like someone I know always says: hope doesn’t make you better, but if you don’t have hope, you won’t seek treatment that actually can make you better. She has been very, very ill, but with LDN, IVIG and some other things is getting better.

    Of course hope has major psychological importance too, but that’s how it actually affects your chances of physical improvement.

    • Thanks Maija I agree, after everything else has been taken away two personal freedoms remain attitude and hope.

      While there is breath there is hope.

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