So I have a question for my lovelies out there with chronic illnesses (particularly eds). Do you guys use special computer mice? Or keyboards? Because my fingers have been pretty bad lately and I think it’s from being on the computer…
curious about if anyone has answers to this so signal boost…
My hands are messed up, too. I use a full set of ring splints, wrist braces and dragon dictation to get around it.
- Them: what have you been up to?
- Me: trying to digest a carrot I ate yesterday
Heads up. This is asking for Internet participation:
“We wanted to let you know about something important:
Karen Arthur is recruiting participants to a study titled “Pain Control Methods in Use by Patients with Ehlers-Danlos Syndrome and Pain Control Effectiveness.” She is looking for participants who are 18 years old and older and with a diagnosis of Ehlers-Danlos Syndrome of any subtype to complete a survey about EDS diagnosis, pain, pain management, and life satisfaction. By doing this research, Karen hopes to determine patients’ preferences for pain management. Participation in this study is voluntary; participants are free to withdraw at any time or refuse to participate without penalty.
Please go to http://cmhc.appstate.edu/eds for more information “
I had a pair of really stiff high boots that I wore into the ground - they gave some compression and kept my legs from having shooting pain on planes and what not… but of course, they weren’t well made and they’re dying a slow death.
It occurred to me that part of my problem is my knees lock…
Boots are one of my favorite functional fashion items. I’ve got pairs with a little extra give in the ankles to allow for additional bracing, and lace ups to control compression. I also like a wedge to pitch me forward and align my hips, but it hurts my knees. Still looking for the perfect cushioned wedge insole for my flat boots. If you’ve got tips, pass ‘em on.
SPOONIE QUESTIONNAIRE - put a number in my ask box
- 1: what have you been diagnosed with, (and possibly self diagnosed with)?
- 2: what will you tend to do at nights, when you can't sleep?
- 3: worst experience/side effects of a medication?
- 4: how has your condition impacted your mental health?
- 5: describe your social life
- 6: hardest thing to do when you are flaring?
- 7: your worries for the future?
- 8: favourite comfort food?
- 9: tell us a valuable lesson you have learnt, through being unwell?
- 10: name 3 things that you miss, taken from health limitations?
- 11: how old were you when you started noticing symptoms?
- 12: biggest injustice about living with a chronic illness?
- 13: worst advice you have been given about your health?
- 14: what items, related to illness, could you not cope without?
- 15: can you remember being pain free?
- 16: do you know anyone in real life who shares your condition?
- 17: one symptom you would love not to have?
- 18: lovely things said to you and something ignorant/negative, about being sick?
- 19: are your family supportive, or mostly ignorant to your suffering?
- 20: describe the feeling after walking up/down stairs
- 21: any natural supplements, powders or alternative treatments you would recommend others try?
- 22: what is the biggest thing you would like people to understand about your illness?
Today I found out I need to relearn how to stand and walk. After almost seven years of failing health, I finally have a specialist - a wonderful physiotherapist who has a tonne of experience with people with Ehlers Danlos Syndrome - and helped people way worse off than me.
To get here, I’ve been…
When your rib suddenly subluxes in a public setting.
That is actually when I feel the most like Miley Cyrus.
(May is Ehlers Danlos Syndrome awareness month.)