One aspect of chronic illness that I've already touched upon is a readjustment of lifestyle that, unavoidably, leads to a readjustment in friendships. I'm no longer a part of the same circles as most of my life is now spent indoors and in bed. As is often said though, one door closes and another opens. A change that I wouldn't swap for the world is that I have formed friendships with some beautiful souls that I have come to cherish.Due to accident or design, a great number of these new friends are Australian and a large proportion are from Brisbane. I am sure I do not need to clarify why that is significant this week. Although I am far away, geographically, from the tragedies unfolding on the other side of the world from me, I am very much closer in spirit. Much of the past couple of days has been filled with worrying about friends who are caught up in the flooding and feeling helpless.
This in turn has led me reflect on what I CAN do. Hopefully those Brisbane residents who count me as a friend feel I am providing something of use with my solidarity and concern and my donations will help the massive clean-up efforts that await the dissipation of the flood waters. But I eventually realised that there is plenty of practical value I can be doing. Not just for the Australians but for anyone who is facing a future with M.E. and is struggling to find quality information or genuine support. Yes, time to roll up the sleeves and get back to work on the project I've been talking about lately.
I've dealt with the negativity already so I won't go back to that again. Let me just say though that I totally understand not everyone will find the end result of this project something they need or want to access. That's fine. Really.
I'm opening up a 2-week 'ideas' stage from now. For those of you who are part of my Facebook circle, I will be in touch there. For those of you who aren't, it'd be really useful if I was able to include you in the updates and if you could email your thoughts on what should be included in any information produced. Think back to the early days of your illness. What do you wish you had known? What did you need that wasn't easy to find? What do you value most about the resources you currently have (practical or people-related).
The email address to use is: ME_Community_Projects@Live.co.uk
touched by your words about our circle of friends.
ReplyDeletei'm very happy to see you rolling up you sleeves. you look hot in your tie;)
i will be thinking on the questions you asked. hope to be very involved as i think it is a very worthwhile project. don't for get to breath;)
Thanks Elise :)
ReplyDeleteI did have to double-check with myself to make sure this isn't a manic episode or adrenaline surge but I'm happy to say it isn't. Plenty of time will be reserved for breathing and staring into space ;)
"Think back to the early days of your illness. What do you wish you had known? What did you need that wasn't easy to find? What do you value most about the resources you currently have (practical or people-related)."
ReplyDeleteThese are really good questions. Here's to some really good answers.
What do you wish you had known?:
ReplyDeleteI wish I had known that this illness is long-term/lifelong in scope - even tho the severity would eventually lessen. And that it would remain a roller coaster ride. I think if I had known that up front, I might not have wasted as much time "waiting for this to pass." It took me quite some time to realize I was living a new kind of life - and to cull all the good moments I could without thinking that any week now, I "will be back to normal".
What did you need that wasn't easy to find?:
Friends who understood - people who didn't dismiss me as having just "burned out" at work with some sort of nervous condition....also, doctors who were knowledgable about the illness (tho this was nearly 17 years ago, and that has improved somewhat...) ... and...long term help from outside sources.
What do you value most about the resources you currently have (practical or people-related)?:
Understanding, consistency and empathy.
These sound trite, but still seem to ring true.
Elise is flirting again !!!
ReplyDeleteI can feel that this is a calmer Barry...still as passionate (and thats good) but its more centred and focused.
I shall be emailing you :O)
Meg - thanks, i'm looking forward to some great answers too :)
ReplyDeleteNadine - excellent, thank you!
Cusp - got it...cheers m'dear.
I'm in the middle of setting up a central spot for everyone's ideas so nothing get's lost amongst all the activity. Watch your emails ;)