They forget (in love) that I can’t walk at all with out my crutches and even then it’s for no more than about 20 minutes at a time. And twenty minutes of agony at that!I’m in bed almost ALL the rest of the time even for many meals.
The last two days we diverted our rough plan and drove to Belgium so that I could attend the EDS conference in Gent/Ghent yesterday. I’m soooo glad I went, I met so many amazing people including some of the world’s leading specialists in #TMJ #Pain and many other things. 12 speakers in all, over nine hours, was beyond exhausting but so so worth it!
Highlights for me were:
- Meeting another EDSers for the first time EVER (other than my own children).
- Chatting in real life with so many of them (there were about 50 at the conference I’d say?)
- Being in a room where splints, wheelchairs, braces, zebra stripes and bandages are the norm.
- Hearing specialists and doctors talk about EDS from decades of experience…
- SOOOOO much validation it’s incredible and difficult to put into words.
- Crying (sobbing) because the collective pain levels in the room must have been through the roof! And it wasn’t just from me!
Best of all:
- Meeting Dr Helen Cohen, one of the world’s top pain doctors! I spent about half an hour with her and I don’t think I’ve ever been so in awe of another human being !! She was soooo good, told me I’ve nailed my own pain strategies and I can’t tell you how encouraging that was.
- Learning so many new teeny tiny things (& a couple of big things) to tweak my life for the better!!
It was all a HUGE reminder that:
- My new book is soooo needed and important!
- That I need to get better at reminding those who love me how crippled I am! I’ve been getting lots of encouraging messages lately saying people hope I’m enjoying walking around Europe and having a wonderful time. They forget (in love) that I can’t walk at all with out my crutches and even then it’s for no more than about 20 minutes at a time. And twenty minutes of agony at that!I’m in bed almost ALL the rest of the time even for many meals. No, this trip isn’t making it worse, I’d be in bed at home or in Molly’s bed but at least the scenery changes 😊
PS: Thanks so much to those who’ve offered to support and keep asking where and how! I’ll keep these links at the bottom of my posts for the next month 🙂 They’re the easy, no-spam emails I’ll send out no more than weekly (and believe me, I miss sending half of those) till the book launches and you can get your free copy!
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