To be honest, after so long and after so many posts written for M.E. Awareness Day I've run out of things to say. Life goes on and every now and then there seems to be another glimpse of hope on the horizon.
However, compared to many glimpses of the past, these little rays of hope do look promising but they need all the help they can get in terms of support and finance so I would direct you to The Whittemore Peterson Institute. This private research facility in Reno Nevada has made real breakthroughs recently and you can make a donation by going here.
However, compared to many glimpses of the past, these little rays of hope do look promising but they need all the help they can get in terms of support and finance so I would direct you to The Whittemore Peterson Institute. This private research facility in Reno Nevada has made real breakthroughs recently and you can make a donation by going here.
Alternatively, and if you would like to get something for your money as well as helping to fund research you can go here where you will find a range of greeting cards, prints etc which have been designed by people with M.E. All the profits go to XMRV research at the WPI. The card project was created by LeeLee Ingram who is an artist and performer living with M.E.
1 comment:
Why do we judge ourselves so quickly and harshly? Is M.E. and its ambivalent perception in the wider world at the core of this or does it hit spots that are sore in us anyway? Both, probably. I've certainly been struggling with asking for help over the years, and it doesn't seem to get easier although I've learned to do it more - partly because I cling to my old self-reliant persona, and because it still makes me feel as if I'm someone needy, but not really entitled. Then there's the sense of shame about being ill, out of which I'd try to talk anyone else, but can't quite manage for myself. On the other hand I think I've softened around the edges, which isn't a bad thing, and I seem to be better able to work out my priorities and focus my energies there. Mostly. Giving up or putting on hold big plans is bloody hard, with M.E. we always have to weigh and make decisions, this but not this, and crying, at least inwardly, about having to let something go to be able to do that other thing, but that's the way it goes. It's a daily task. Hopes, desires, dreams never tire, do they. What I find worst however is having to explain myself again and again to people who don't know me (well) and not being able to fully convey what life with M.E. is really like, partly because people don't really want to know, partly because it's just so hard to describe in words.
So a moan or a rant every not and then is not a bad thing, in fact can make you feel lighter, for a moment. Sharing a load, etc.
And you seem to be able to hold a lot together, what with looking after a disabled child, a challenge whatever one's health. I do hope somewhere inside you there's also pride about what you manage against all the odds.
And we do need a lot more ME-awareness, so thanks for mentioning the day in your blog..
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