Monday, 12 September 2011

My Story - Published at Becoming Visible 4 ME

I was honoured to be asked to tell my story for publication on the Becoming Visible 4 ME website. This has 'gone live' today and you can find the article HERE.

After some deliberation, I decided to tell my story from a personal point of view rather than by focusing upon a male perspective of chronic illness. Mine is the first story published on the site by a male but I wanted to try to demonstrate that we are just the same as women when it comes to dealing with such massive life changes. The emotional aspects, rather than the physical ones, have primarily been the focus of my blogging and I wanted to stay true to that.

My story was written prior to moving to my new apartment so it is already somewhat out of date. However, it does capture that post-acceptance period of my life where I finally moved forward and decided I must carve out a life alongside my condition.

The site is the brainchild of Dominique, whom many of you may know from the ME online community. The aim of the site is to tell people's stories, one at a time (monthly) in the hope that the stories are shared and a wider knowledge of what living with ME is like can be provided. Dominique is a formidable woman who has herself battled serious illness and who continues to be a driving force within the community with her website and various other projects. I am deeply grateful to now be able to also call her a friend. Please share the great work she is doing by posting the link on Facebook etc.

Take care,


  1. Think your story will be very helpful to others...especially those who are newly diagnosed. It's been really interesting (and some times painful) to watch you wrestle and eventually come to terms with the difficult journey towards acceptance and I really admire your strength and resolve.

    As you say, Dominique is also amazingly strong and full of beneficent fortitude. She really is a shining light in the M.E. community

  2. You're very kind Cusp, thank you.

    It must be difficult, having trodden the path, to watch others stumbling over the same things you had to work through in the past. I've probably been guilty of dishing out far too much advice (even when not requested!) so I'm trying to also step back and let people find their own points of balance.

  3. Show off !!!! hahaha. Well done Mr. x

  4. Barry - Thank you for being our 'first'! And thank you for our friendship. You are amazing! I'm looking forward to seeing how much more you are capable of!

    Lee Lee - I'm going to be asking you for your story soon, so you might want to get ready! ha ha

    You too Cusp! (wink)

  5. Thank you for sharing your story. I'm about 16 months in from onset last spring. I'm still in the resistance stage, reading med articles and arrogantly thinking I can come up with some magic combination of food, meds and supplements that will get me back to normal.

  6. Hi Baffled,

    I do think the food and drinks we consume, the medications and supplements we drop into our stomachs, do have an impact.

    There are certain supplements I will never stop taking and there are certain medications I wouldn't take ever again on pain of death.

    I stopped eating or drinking anything containing Aspartame (I was a Pepsi Max/Diet Coke junkie so it was NOT easy, haha) and I immediately noticed the headaches and migraines were greatly reduced. If anything, they have reduced even further the longer I stay away from the evil sweetener.

    So, I do think there is a place for looking at everything we put into our bodies - I absolutely do. I think the difference, for me, now is that I see it as an assistance rather than a cure.

    Perhaps there is a magical combo out there that would have allowed 100% recovery but I've stopped searching for it. The energy I save can be put to use doing day to day things in my life and I can stop beating myself up for STILL not having completely recovered.

    If you do find what I couldn't though, please do look me up and clue me in :)

  7. good man! well done on the writing.
    Best wishes

  8. Thank you for what you shared via Dominique's site. I've just come from reading it and commenting that we must wear the same shoe size as we seem to have walked in those same shoes.

    Very thoughtful, very helpful especially in relating your journey of emotion and attitude.


  9. Bless you, glad to have "met" you glad you have come to a place of personal peace. Best always, N

  10. Wow, Barry, I have just read your article and am moved and impressed by it and you. The fact that you a reached a place of relative acceptance in such a short space of time amazes me. I have been ill for 20 years and I still struggle hugely with that.

    It's also wonderful that you had access to knowledge about the best strategy to use in the first year in terms of rest. When I was diagnosed, there was no Internet and no information, and I was told to try to keep going as much as possible. I pushed myself for years with disastrous consequences - deteriorating from around 30% to being bed bound and functioning at around 5 -10% for the last several years.

    I'm so glad you have improved since that first year, and again, impressed by the sense of peace your article exudes. Your thoughtful writing is a pleasure to read and I will gradually try to explore your blog.

    Best wishes,

    Amy x