Chronically Jenni
Spreading Awareness & Helping Others with EDS & POTS
My EDS Survival Kit (Part 1)
Over the past few years, I have found so many amazing products and hacks to help me with different aspects of my connective tissue disorder (Ehlers Danlos Syndrome). Some of these things are quite specific to EDS but others would be helpful for a wide range of chronic pain conditions. I’ve called this post part 1 as I learn about new things every day so I will do a little round-up every few months but the full list will always be available at kit.com/ChronicallyJenni
DISCLAIMER: I’m not a medical professional and EDS and similar conditions vary so much from person to person that these things may or may not be helpful for you. If you’re unsure please contact a medical professional. I am sharing my own personal experience of how they help me manage my condition. Some of the links below are affiliate links, meaning, at no additional cost to you, I may earn a commission if you click and make a purchase.
2. My Knee Pillow
3. My New TMJ Mouth Guard
4. My Stickman Communications Cards
Everything on Hannah Ensor’s Stickman Communications is super helpful when it comes
to helping people understand what you need them to about your condition quickly and easily. Basically, they are small laminated cards which you can pop in your handbag and use as a quick and easy explanation for your condition or why you have to do something a certain way. I remember using my POTS one with a member of staff on a cruise ship. I was completely out of breath, sat on the floor and couldn’t explain my condition so gave him the card so he knew what was going on and that this was normal for me. She has a card for almost every situation and condition and if she doesn’t you can request one especially. She also has a great range of products from hoodies to badges to bumper stickers to help make explaining EDS that much easier.
5. Braces & Supports
I could write a whole post on it’s own about the different braces and supports I’ve used over the years. I love KT tape but it’s not always easy to do on yourself and has been causing me major skin reactions recently. Plus, since this is a lifelong condition, I have tried to invest in a few more permanent solutions.
My favourites and most used braces and supports are:
- My active posture shirt – I was kindly gifted this by the company for the purposes of review and it’s been helping so much with my shoulder subluxations – you can read the whole review and get a discount code here.
- My Thumb supports – although tape works well at keeping my thumb in place ( I highly recommend this video if you want to tape your thumbs) it’s hard to keep on for long as you wash your hands so often. So I invested in these thumb supports when I went back to uni and they are so helpful and much less restrictive than some other braces. I recently recommended them to my friend ‘Georgina’s Journey’ and she’s loving them too.
- My Knee Supports – I’ve tried so many different types of knee supports over the years and have found this type to be the best and most comfortable. They sit just under your knee cap which can help to stop patella subluxations. They also don’t move or get sweaty or make your knee cap more uncomfortable like other supports I’ve tried.
- Ring Splits – I cannot leave out the lovely ring splits by Zomile. If you have troublesome finger joints get yourself the only stylish braces out there. People always compliment me on my stylish ring and are so surprised when I tell them it’s a brace. A full set would be pretty expensive so I chose to get one for my right index finger to help when I’m writing.
6. Heating and Cooling Therapy
Many people with EDS find that heat is the best way to manage a lot of their pain but my POTS has made me so heat intolerant that it just isn’t the way forward for me so I much prefer ice to heat. Here are a couple of the best things I use.
- Biofreeze – This is my absolute go-to for any sore joints and muscles. It really helps to soothe any tightness. I bought the Deep Freeze version the other week out of desperation but it didn’t touch the sides of my pain the way Biofreeze does. I always choose to buy the roll-on as it’s much easier to apply, especially when you are applying it to yourself, and it doesn’t get all over your hands. I will always have one of these in my bag when I’m out for a long day.
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Gel Packs –
These are gel packs not only can you use them hot or cold depending on your need and preference it comes with a fabric pouch and strap which means you can use it, hands-free on the vast majority of joints.
These are gel packs not only can you use them hot or cold depending on your need and preference it comes with a fabric pouch and strap which means you can use it, hands-free on the vast majority of joints.7. Assistive Technology
Technology is taking over and there’s so much more it can do to help us if we let it 😛
- Amazon Echo Dot – well any of amazon’s Echo devices (but I always try to go for the cheapest possible option). An Echo Dot is great because you can tell it to do so much without having to move and if you have smart bulbs and plugs too you can control so much from the comfort of your bed or chair on bad days. This is also helpful for lots of people as I know some good friends used it a lot when they had their newborn and needed both hands. (If you click the link they have an offer at the moment where you get 2 smart bulbs thrown in for the same price as the dot on it’s own)
Kindle Fire – I’ve been using my Nanna’s old one of these for years and it was on it’s way out so after graduation I treated myself to a new one. I’ve really got back into reading recently and I’m finding it so much easier to hold than a regular book. I also love the new feature where you can put it on a bedtime setting so you can use it before bed without the blue light affecting your ability to get to sleep.
Dragon – I honestly couldn’t have got through uni without Dragon. It’s a great piece of text to speech software which is more accurate than anything else I’ve used. It meant I could talk all my essays instead of writing them meaning not only did I use less energy and save my hands, but I could also lie in bed with my laptop on my desk and still be working. If you have to write in any capacity it’s definitely worth it, I should use it more for blogging really! It is expensive to buy on your own but if you are a student you can get it through Disabled Student Allowance and if you would help you with your job you should be able to get it through Access to Work.
So that concludes part one of my EDS survival kit and I’ll post a part 2 in December with more helpful products that I’ve found to make EDS that little bit easier to manage. If you’ve got any products that help you with your condition that you think should be added to the kit let me know in the comments.
Spoons & Love,
Jenni
I don’t have EDS myself but know lots of others who do. Looks like a great list! I will share –
Sue
Living with ME/CFS
Thank you so much Sue! I hope some of the things might be of use for people with various conditions.
Love it! Thanks for making the effort for us all. I will sure be taking your advice and buying perhaps more than I can count on one hand ??
Thanks so much Naomi. I’m really glad you found it helpful! Let me know which bits you decide to get and which you find the most useful. 🙂
Jenni, if cold helps you, look at the “Gel’O Pillow” on Amazon UK. I have two and use them every time I need to lie flat. They really help headaches caused by problems at the top of your neck. Once frozen they last up to 3 hours.
Thanks Penelope. I’ll definitely take a look at those. Might sound like a stupid question but does it melt all over your bed though?
Highly energetic blog, I liked that bit. Will there be a part 2?
Thank you. Part two will be coming End of November/ beginning of December. Already found lots of ideas to share with you guys.
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I’ve just bought the Etac long handled hair washer from Amazon for my daughter, as she struggles washing her hair cause she cannot raise her arms above her head without subluxation of her shoulders. Hoping this will help!
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