http://www.canaryinacoalminefilm.com/
So far, so good - they are raising money and I hope this film raises a lot of awareness and maybe actually instigates some change.
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| A view from when we took the boat out - it was the last really nice warm day of this year |
Anyway, Jennifer Brea, who had the idea to create this film, was interviewed and helped to create the best article I have ever read on M.E.:
http://blog.ted.com/2013/10/25/illuminating-an-illness-without-end-fellows-friday-with-jennifer-brea/
This is really a good article to read if you have M.E., and to get your nearest and dearest to read if they don't understand. Reading it made me feel release; sometimes being able to read someone else putting into words what you feel or think is so cathartic. I am finding it hard to write these days... which is ironic for someone who used to be a freelance writer! I just can't seem to get the thoughts out properly, so I shall sign off for now.
Before I go - we had a storm on Sunday/Monday and had no power for a long time... from early Monday morning through into Tuesday morning... so I am behind on work, but the good news is, I slept a lot and caught up on sleep where I'd been having insomnia. Yay!
Just wanted to come over and say thanks so much for you lovely long comment on my blog with lots of advice, it was really appreciated! I haven't yet tried nor heard of alpha lipoic before you mentioned it so I will be looking into that further and hopefully giving it a try. With the POTS thing, my M.E specialist told me she basically thinks I have it, and I was supposed to go for tests but my local hospital is rubbish and they took me off the waiting list so I'm back at the bottom of it, so god knows how long it will be before I will be tested, do you have it? Sorry to hear about the boat incident - what a scary place to faint, I mean imagine if you had gone over the edge! Not good :(
ReplyDeleteIt seems quite obvious but I have never actually thought about taking a meal replacement drink to help me maintain a good weight, so thanks for that suggestion sometimes an outsiders view really does see things you have missed!
Canary in a cole mine looks promising and I think it's great we finally have something in the M.E community to offer us some hope for the future, and thanks for sharing the article it has now been saved to my favourites for future reference!
I hope you are having a good day, and I'm glad you got some good quality sleep.
If you are on twitter if you want to follow me (@hayleyszucs) I will follow you back and we can keep in touch there.
Hugs!
Not sure if you will see this reply Hayley, but I will look at signing up to Twitter.
DeleteI am glad my comments helped a wee bit. Sometimes I feel maybe it's wrong to leave long ones - like I don't want to be interpreted as preaching to the choir or whatever... but then I think the fact we communicate via these blogs means we can open dialogue between fellow sufferers and any avenues we have not tried are worth considering.
Re: POTS - I also have not gotten an NHS diagnosis (no surprise there!). According to the poor man's tilt table test I have it - I have been struggling with this tachycardia for some years now (it got particularly noticeable after the AI thyroid diease developed). One day, if I am able both physically and financially, I may seek to get to the US and get tested by one of the specialists there. I seem to have other ANS dysfunction or some kind of vascular element to my symptoms and sometimes wonder if I could help that more. I am not sure if your doctor/s have considered this, but some people who have POTS find a beta blocker helpful.
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