I always thought of blogs as being narcissistic, business related, or as my sister's, a way of keeping in touch or memorializing.

But, by necessity, I am learning a lot about myself. I find I need to get my thoughts out, and it helps me to know that someone else will read them. So I have created this little space for myself, to express the things I have trouble saying (be it emotional or physical trouble), to share what I'm going through, and what I'm learning through it.

I absolutely welcome comments. It's nice to know how people relate to what I'm saying.
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Saturday, 24 September 2011

International Conference, Check. Recovery, In Progress.

I have attended a great many conferences in my life, local, international, regional, professional, volunteer, spiritual - you name it - but this is the first time ever I attend a conference where beds are available to attendees in a quiet room off to the side attended by paramedics.

Yes, indeed, you know you're at a conference for sick people when...

This was a really big event. There were doctors and researchers and activists from all over the world, all talking about ME/CFS. They were there for several days to talk to each other, and for one day, to talk specifically to patients and our caregivers. Because this all happened to take place in Ottawa (last time it was in Oslo, I think), my parents and I decided to participate.

One day to drive there, one day of conference, and another day to get back. I am most definitely in need of a few days of extreme rest therapy, and so I will report more fully on what I actually learned at the conference in a few days, once I've had time to rest and process, and maybe even deal with the Jewish holidays coming up, and get to spend some time with my wonderful aunt (the infamous Cuq, for those of you who read the comments) who's visiting this week.

Last time I wrote about crashing, it was after the exercise ECG, and I wasn't sure it had been worthwhile. This time, there is no doubt in my mind, not even a second's worth, that this was absolutely worth the effort, and the few down days I know are coming.

Without a doubt, the most interesting and fulfilling moment for my family was meeting the person, a physicist known online as Rich Van K, who designed and has been researching the methylation protocol I've been using.

The very feeling of being in a room where everybody knows, believes, understands and shares the way I feel was incredibly validating. When we got to the hotel, and realized how long a walk it would be to the conference, and my parents got me a wheelchair, I was feeling somewhat embarrassed to be wheeled around. And then, when we got there, and there were walkers, wheelchairs, and canes aplenty, I suddenly didn't feel quite as bad. And then, the most amazing thing happened - a fellow attendee around my age said she wished she'd thought to get a wheelchair, and that she had been resisting getting a cane, but seeing me with mine, she was going to go do it.

More than anything, the conference was validating. It was also incredibly friendly. No matter how awkwardly we were moving, or how tired we were after sitting up for so long, there were smiles and welcoming words, and a lovely warm atmosphere. Sure there were politics, and even a couple of disagreements between the people on the dais, and researchers who felt left out, but really, the sense all the way around was that people were there to learn, to support, and to be supported.

I do think, however, the most important thing we learned, is that the drive between Ottawa and Toronto both ways is not long enough to play all the songs starting with the letter "A" on my father's ipod.

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