It’s May which means it’s EDS Awareness month! I’ve been living the chronic illness life since 2010, and have been officially diagnosed with Ehlers Danlos Syndrome since 2015. There are so many things that I wish I knew in the beginning, so today I want to share the items that have helped me make life with EDS just a little bit easier.
Here are the top 5 items that I think should come with an EDS diagnosis!
# 1 U-Shaped Body Pillow (pregnancy pillow)
This is by far the GREATEST purchase I have ever made. This pillow allows me to keep my joints supported no matter where I am. I sleep with it every night, use it every time I am on the couch, every hospital stay – even ER trips, we take it on vacations with us (well before COVID lol I can’t wait to be able to vacation again), and anywhere that I am going to sit on a couch or sleep. We bring it everywhere because it stabilizes and supports my joints in ways nothing else can. I have the Queen Rose 55 in Pregnancy Pillow, but did not like the pillow case fabric that it came with so I found a jersey knit pillowcase that is much better. I have had my pillow for about 2.5 years and will probably replace it sometime this year but will keep the old one so I can have one downstairs and one upstairs.
# 2 Compression Ice Packs
Ice packs are a given, but compression ice packs have literally changed the game – and my subluxation/dislocation recovery. I have every single “joint” they have made and have bought an extra “replacement” ice pack for each brace so I can switch out between icepacks. I am telling you these ice packs will change your life. The brand is NatraCure and the joints they have available (which can be used for the right or the left) are: ankle, knee, and shoulder. The only brace that does not give you the option to buy a replacement ice pack is the ankle.
# 3 Shower Bench
Showering is a workout for those with EDS (and most chronic illnesses)so many have a shower chair, but shower benches are where it’s at! They give me so much more room to truly be able to shower properly, they also make getting in and out of the shower so much easier. The only thing you should know is that you will need to cut your shower curtain liner to go over the bench or double up on liners (one for each side) so you don’t soak your bathroom floor.
# 4 Adhesive Remover
All that tape, Central line/IV tegaderm, CGMs, etc. can get us really sticky and adhesive remover is a godsend (and while we are on the topic an endless supply of the different types of kinesiology tapes would rock too 🤣) The brand I prefer is from Smith & Nephew – Uni-Solve Adhesive Remover I prefer the 8 oz bottle rather than the individual packets. I keep the individuals in with my emergency tools and in my hospital go bag, but they rarely get used as I like to use the bottle with some organic cotton balls instead.
# 5 Today Notepad + Round App
Staying on top of all my medications, IVs, appointments, and daily life is exhausting especially when I have medications that don’t line up in a simplified timespan. I religiously log all of my meds on The Round App and I prefer this app because you can set medications to be within a window of time rather than just a specific time. I need this because my med schedule depends on when I wake up and having an app that adjusts to me has been so helpful. Along with the app, I like to use the Today Notepad because it is not heavy like a traditional daily planner, and gives me space to see my medication plan on paper as that is helpful for me. I was an avid daily planner user, but living the chronic illness life changed how I do things.
Remember giving up a tool that isn’t serving you – even if it has served you well in past seasons – doesn’t mean you are failing it means you are growing and doing what is best for you today.
I hope you find these tools helpful! What is a product or tool you can’t live without and think should come with your diagnosis?
Cassie Nolin is a married spoonie who lives the chronic illness life with EDS + Co. (Ehlers Danlos Syndrome and it’s comorbid conditions.) She challenges others to choose grace over guilt while goal setting, and is in ministry part time serving the online community through Grace + Goals and The Spoonie Study. She loves planting, hand lettering, and sharing the hope she has found in Jesus. Her blog, Living the Chronic Illness Life, is in the top 100 chronic illness blogs and in 2019 she launched her podcast, Chronically Cultivating, where Cassie encourages women to live authentic and intentional lives through their diagnosis’ not in spite of them. You can learn more about her at www.livingthechronicillnesslife.com
This post contains affiliate links