Wednesday, 5 January 2011

A Short Break

I've decided to take a week or two away from my previous activities. This means no blogging, no Facebooking, no developing the Heart Rate Monitor forum and no working on my previously explained 'dream'. All of these are only on hold temporarily though.

I think this break will do me good on a few levels but it's mainly in response to how my previous ideas have been received within the 'community'. I have been surprised, and dismayed, by how hostile and negative some of the private communications received have been.

I appreciate what I have set out is my vision and I don't expect others to readily buy into it. I appreciate some might think it is pointless. I also expect to do the biggest portion of the work myself. I am fine with that.

I understand that this community is made up of people who are sick and might be struggling just to keep their heads above water and that they cannot devote the time or brain power to helping out. I am fine with that too.

What I am feeling angry about is how some have taken what I consider to be a selfless act and railed against it so. It makes me question the motivations of some who are active within this community of ME/CFS patients. I am saddened that the practical attempts to provide support and information, to those who might otherwise struggle to look after themselves in the absence of medical support, has been tainted by the politics attached to this illness and the bitterness of a few individuals. I must process that and it's best done away from being so active online. I don't intend to stay angry or stay away - I just need to regain my balance so that I can continue to move forward with what I still consider a worthwhile project.

To those out there who have been helpful in providing me with constructive feedback and kind offers of help, I thank you a million times over. It is only through pure-hearted and positive action that progress is made and I look forward to working with you all in the very near future.


  1. Good plan and digest. You'll come back stronger. Sadly the whole business of M.E. ( and for some it is just that...a business) is complicated by politics and egos, arguments and backstabbing. However, there are many many good people, more selfless souls, who just want leave all that aside and get on with the really helpful,useful stuff.

    Regain some strength and focus and see you 'on the other side :O)

  2. Barry - I will miss you while you are gone but completely understand. I'm sorry you've been met with some hostility. That makes me angry knowing you have been treated that way. I haven't been able to read through your posts over the last week. So this will give me time to get caught up! Take care and do what you need to do so you can get back to those who care about you. Hugs...Liza

  3. omg i cant believe i wrote loads and its 'gone' lol,now where has it gone,i wrote and posted ....i am so brainfogged now i cant write it again but the gist of it was 'people like me need people like u' you make us feel less alone,are willing to take the time tho ill yourself to help and i for one so appreciate that. there are many poeple who would benefit from a site such as u suggested and many that already find strength and comfort with yr blog. thanku. kimberely may

  4. Dear Barry, I am angry too, like Liza, that some people have met your good intentions and admirable project goal with negativity and even hostility! I understand why you would feel dismayed over this, and it's a good idea to take a break for awhile (but like I said earlier, we will miss you!). Don't give up. I still offer my help and services and support to you in your very worthy endeavors! xx, Mo

  5. "Don't be afraid. Don't be daunted. Just do your job. Continue to show up for your piece of it, whatever that might be." — Elizabeth Gilbert

    Don't lose heart, Barry.

  6. Goodness me, I'm horrified uve been getting grief. I hope all is ok. Take time out & forget about the people that don't matter. I love u Barry, ur ideas, ur blogs, ur honesty. Cusp - love u 2! Take care xxx

  7. I'm going to get into trouble now for not loving Kimberley 2, sorry just saw ur name up there, so I love u all! I've got a very thick head on me 2day, please excuse xxx going back to my cave now xxx

  8. ooh feel the love here! I am also saddened that your enthusiasm for helping others has been met with negativity. I cannot see any issue with your ideas, though navigating the minefield of advice, "fact" and opinion within such a varied group as ours is will be hard, there is no reason not to try. In fact the fact that it IS a minefield for the newly diagnosed/ill is all the more reason to sort it out and make it easier for them. I pledge my supprt and help where possible!

  9. Thank you, all of you. A more beautiful collection of souls I could not have hoped to attract.

    I'm gradually getting back into the saddle again. The break was shorter than I intended it to be but I am so over it now and can focus again on doing practical things that might help people rather than lamenting over those who try to discourage me.

    Love to you all xx

  10. .....things take our case a lot of time...3 steps forward and two back when its good......have a lifetime I'm still putting together.(still have many nites where it all seems so pointless and not a clue as to how to get thru another day(minute actually)when I find others with same thoughts...becomes major assist to taking another step.....<3

  11. You're right Clare - it's a zig-zag path ;)

    I agree wholeheartedly about the power of finding we aren't alone in our thoughts. Glad you find the strength to go on too :)

  12. Hi Barry

    Good to hear you're back.
    Really enjoy your posts as I can, like many, relate to many of the feelings you describe. Just wanted to add my voice to your project.
    I liked Lee's suggestion around CFS for beginners. This is the one thing I wished I'd had to hang on to, some basic reassurance on the journey that lay ahead.
    I agree and I think it's underestimated (by us, friends, family, employers etc ) how much the pushing through contributes to creating further damages.
    Having an 'advocate or SW or else' is also v important I agree, there is so much to think about, sort out, get panicked about etc. An understanding and accepting person around that helps with practical stuff and keeps the negativity at bay makes a lot of difference.
    Self acceptance is a tough one, still working through that one but also important. Time and slowing down is needed although the temptation is to rush into getting better, or deluding oneself into 'being back to normal soon'. Survival mode and pressures of the modern world I guess...

    Take Care xxx

  13. Hi, Barry -

    I think this may be the first time I have stumbled upon your blog - I don't know how I missed it before! I'm really excited about my new heart monitor, though I haven't had time yet to read all the information on the FB group.

    I can relate to this post and am so sorry you've experienced some negative backlash. I think it was a great idea to take a brief break to regroup. I experienced the same thing this past fall and was similarly disappointed by the lack of solidarity in the online CFS community. But I also received a lot of support at that time and realized the attackers were a very small minority. I hope you've realized the same thing by now.

    I look forward to hearing more about your ideas and applaud your efforts to try to give something back!

    Best -


  14. Onirical - thanks so much for your input and encouragement :) I have added your comments to the group page as per my latest blog post.

    Sue - I'm excited whenever someone starts using a heart monitor - I hope it proves useful for you :) thanks for your encouragement ... I have regrouped now and will focus on all the amazing souls out there who do want to help others.