MY EDS Challenge Day 3- EDS or HSD in a day in Hypermobile Life

I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

A typical day for me may look like:
1) Waking up and assessing what type of pain is most present. I slowly wake up, make myself some tea and prepare for work. I have pelvic nerve pain after going to the bathroom and that usually comes on mid morning and I will get a preview of the type of nerve pain I will be dealing with that day.

2) Working remotely for 2-3 hours a day. Taking multiple short breaks to check in with my body’s pain levels. I may need to reposition several times, between standing, sitting, and laying down. I may need to massage my neck.

3) After work, I will need to eat my first small meal of the day and take my meds and wait to see if my pain will shift presentation as it often does when food first starts to move through me. I will also prepare my water bottle to make sure I am drinking enough.

4) I may attempt a short walk outside or on my treadmill if my body allows. I put on my compression garments and go for it. This is followed by doing some movement exercises on my mat. If I am in a bad pain flare, this might not be possible.

5) After walking, I need to either get in the bathtub OR lay on my infrared heat pad to calm down my muscles. My legs and glutes have a lot of spasms and I need to rest and wind down to keep them in check. I may also grab an ice pack, and use multiple pain tools such as neck massager, acupuncture roller or tens unit to calm down my nerve pain.

6) After this I may take a short nap and when I wake up, I will assess what else I can do. If I need to run any errands, I might ask one of my parents to drive me somewhere as driving is generally a miserable experience for me. If I go out in public this requires a lot of preparation. I may bring my cane if standing in a line is a possibility. Once I’m done with that, I will eat another small meal and assess the damage.

7) Towards the late afternoon, and evening my pain and fatigue symptoms tend to get worse due to a variety of factors. Blood pooling is a major factor. I have dysautonomia, and multiple vascular compression syndromes. This also affects my neuropathic pain. In the evening more food is in my intestines and gravity and lack of support for my organs pulls everything downward. So I may need to elevate my legs or do more pain distraction techniques followed by another nap. I will use my dolphin neurostim unit to calm down the vagus nerve.

8) Sometimes I am able to get some chores done in the late afternoon but I need to be mindful of how much movement I am doing and rest/pace myself so I do not over work. I need to listen to my body and stand up slowly so I don’t pass out. I may need another short nap in the evening, depending on how much work I have gotten done. It’s not good for me to shower in the evenings since that’s when my symptoms are the worst but I will do this every other day. I hate morning showering.

9) I will eat my last meal by 7pm and I usually do 16 hours of intermittent fasting as it helps my digestive system not become overloaded. My social life consists of talking to people over DMs, sometimes the phone or zoom support groups. I will work on social media and blog postings and interact with other folks who have EDS.

10) I will go to bed around 12 midnight, prior to that I enjoy reading. Sometimes I will need CBD/THC to get to sleep if the pain is too bad. It takes me about an hour to actually fall asleep.

Last updated May 03, 2022