My EDS Survival Kit (Part 1)

Posted on September 20, 2019 by

674 Comments

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.

  1. My Ergonomic Knife

This knife has been an absolute lifesaver in the kitchen as the joints in my fingers really struggle with the position your hand needs to be in to cut with a normal knife. Using your hold hand to grip and the weight of your arm to cut it makes chopping so much less painful. You can see me using it in many of my vlogs but I talk about it most in my recent EDS Hacks Video.

2. My Knee Pillow
I don’t have to tell you that having a chronic pain condition makes it extremely hard to get comfortable at night. So I asked for this knee cushion last Christmas and now I can’t stay anywhere overnight without it. It means I can get my knees into a much more comfortable position to ease the discomfort in my knees and hips but the main bonus of this particular pillow is that it straps (comfortably) to your leg. For some reason it seems that people with EDS tend to be massive fits so when I’d used other pillows before they’d end up on the other side of the room in the morning, so having the strap means it actually (for the most part) stays on my leg so I don’t have to go searching for it in the morning.

3. My New TMJ Mouth Guard
This mouth guard is my latest purchase and I’ve been trying it out over the last week or two. I’ve been having some really bad jaw and facial pain so I asked on a Facebook support group to see if anyone had any advice. I had various different responses but a lot of people had said to head to the dentist to get a mouthguard. Now, I’m not the biggest fan of dentists and couldn’t really afford to go even if I wanted to so I found this online and thought it was worth a shot and it’s been so good. It comes with two different sizes I needed to bigger ones to reach my back teeth and Mike and I had a good laugh as I followed the simple instructions to mould them so they were comfortable and it’s calmed my jaw pain right down. Obviously, I will mention it next time I go to the dentist but this seems like the perfect solution for now.

4. My Stickman Communications Cards

Everything on Hannah Ensor’s Stickman Communications is super helpful when it comeshEDS-pack- 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.
  •  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.

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

 

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