What is it?
I’ll just go over my type but please research we come in all sorts of varities of fun.
Bendiness that would make us super awesome at yoga if we didn’t dislocate.
Did I say dislocate? I mean people can’t just pop out their joints right? Oh yes, we are special! I have between 5-10 dislocations a day and it does not limit itself, from wrists to toes anything is up for grabs. I am sure this has to be a super hero ability but the only uses I have found are lame feel free to message me if there is a better way to leverage this disease on the crime fighting scene.
Nope not the lay the head down tired the donate blood, fast for the day, run after kids, forget to sleep, have finals tired. This can be from POTS (aren’t acronyms fun?) but many who just have EDS have this as well. Want to check for POTS? Test your heart rate sitting then standing. More then 30 beats per minute diferance call your Dr.
When to call a Dr? Frequent disloactions, major hypermobility. Do you have hypermobility? Star of your ballet class? Super fun with bendy party tricks? You might be. Sever joint pain? Constant muscle pain? Aren’t we fun?
Cool and awesome tools to cope?
Walking sticks: my favorite are Smart Crutches. I got them for my son since they have a cool factor. Soon I started stealing when I needed to go where my wheelchair could not so now we have two pairs one in Black and one in Tardis Blue
Wheelchair: I love it so much! I wish I had not waited so long to get it. Huge change in ability to do things for longer time and distance. Rule #1 NEVER order your first chair online. I can not reccomend Wheelchairs of San Mateo enough. #2 weight is everything. You think 20lbs isn’t much until you have to hual it into a trunk. I swear I will think of more rules soon but these two I almost broke and it would have been disaster.
Smart Drive: Wheelchair important and very helpful. If you want indapendance and would like to go up hills the smart drive is very important. A small wheel that goes on the back of your chair and it powered my chair up Union Square. I may have run into a few people but I try. On that note if you get one there is a bit of a learning curve so test it out for a while not on hills or near many tourists. See you can learn from me.
Compression Stockings: I have tried a whole bunch but Sockwells are my favorites. With thumbs and wrists that pop out these are the easiest to put on and off. If you have POTS these are very important for keeping a heart rythem.
Coconut Water: Take your pick but this with Sea Sale is the best
Drugs: So many as you see from my cartoon (Thank you Paper 51 and Typic). From the pain killers to heart regulators to the hope inducing and extremally expensive herbal concoctions.
Just a little helpful list but please contact me if you have any questions in the comment section.