My EDS Challenge Day 4- A Day with EDS/HSD in Life with Ehlers Danlos

  • May 4, 2021, 11:38 a.m.
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  • Public

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.

Day 4 of the challenge: A day with EDS/HSD

My days begin with waking up at 7am ish and assessing how much pain is present, what type of pain is it? (nerve, vessel, ligament, muscle, fatigue). Depending on if i go to the bathroom or not that could make it worse. Then a cup of tea and sign into work remotely until about 9-10 am. I need to alternate between standing, laying and some sitting during work hours and take short breaks to stretch and relieve tension and pain. I have come to rely on my back roller and other tools to distract from the neuropathic pain through out the day. Once work is over i will make a small smoothie and potentially prep for a crock pot meal which will last me and my boyfriend awhile for leftovers. Then go for short walk #1 and listen to a podcast. Tuesdays and thurs are PT days where myofascial and visceral work is done which gives me a few hours if not half a day of pain relief. I may need to make phone calls to drs, keep up w emails, for appts ect. I need to make sure I take my meds. I then rest and reassess for the rest of the day. Sometimes my day ends there and I have to spend most of the rest of the day only doing things I can do from bed. Other times I am able to do more. I may have energy to socialize on zoom or the phone but i dont see many folks in person. I will have a solid meal between 12-3 pm depending on pain. Then, Mike Shinoda is on twitch at 12pm during the week!! Between 3-5pm is when my abdominal pain and pelvic pain gets pretty bad and i might take a short nap. If I am feeling decent enough (and the weather permits) I will take short walk #2 and get the mail. I do not drive at the moment so I rely on other people to pick up groceries and drive me to PT. I will def do some writing, reading and support groups a few times a week. Research is continually important to me. Another outlet I use during my rest time is Animal Crossing New Horizons on the nintendo switch, which I play with my boyfriend and two of my besties. I may be able to get one cleaning project done (laundry, bathroom, etc) with short breaks if I’m feeling light headed. Evenings is when my pain is the worst so I am usually laying in bed. Evening pain levels depend on how much I physically overdid it during that day, how much solid food or any food I have eaten or the amount of times I have gone to the bathroom.

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