23 Ehlers Danlos Syndromes Life Hacks: The Ehlers Danlos Series

 

Although, being diagnosed with Ehlers Danlos Syndrome, has given me slightly more sanity. Living with this illness, like many chronic illness day-to-day is no easy task. One of my health therapists asked me recently – “What makes your life easier managing Ehlers Danlos Syndrome?” I had to think, I mean really think as I watched the seconds tick on the clock in the medical room.  Due to my shocking poor memory (courtesy of Dyspraxia), I started making a list that lead me to the inspiration of this blog post.

It would be naïve to say everything on this list could help someone manage living Ehlers Danlos Syndrome because the symptoms vary from patient to patient (even diagnosed with the same type). However, I hope some of my life hacks, can help someone you know or yourself living with EDS or a similar physical mobility disability.

Pin It


So here it goes…

23 Ehlers Danlos Syndrome Life Hacks 

  1. Stock up on pillows

Having multiple pillows on your bed won’t only look pretty but will help protect you if you move around a lot in your sleep and minimise abrasions and bruising.


  1. Online shopping

If you do all your shopping online, you will not need to worry about carrying heavy bags. Although, you normally must pay for delivery, you can opt in to saver plans with many grocery stores and/or upgrade to Amazon prime.


  1. Hot bubble baths

Hot bubble baths, help soothe muscle tension and reduce stress. With a more relaxed body, you have more chance of getting a decent nice sleep. If you have sensitive skin, you can buy PH friendly bubbles or look into using baby bubble baths.

bubble-bath-700


  1. Voice dictation

If you are a college/ University student or have a job that involves a lot of writing, voice dictation software like dragon could save you a lot of time and prevent additional joint pain.  Dragon software typically starts from around £140 but you may be entitled to get the costs reimbursed by your education provider or employer.


  1. Buy a dish brush

If you are like me, are not lucky enough to own a dishwasher. A long brush to do the dishes can prevent you having to extend your arms and clean your dishes faster.


  1. Soft pyjamas and fluffy socks

It may seem obvious but soft pyjamas and fluffy socks are more comfortable and keep you well insulted in the colder months. If you sweat a lot you may want to look into buying silk pyjamas because they absorb more moisture than fleece.


  1. Use an electric blanket

An electric blanket can help you regulate your body temperature and rest well in bed. Heated blankets have adjustable settings which can make sure you remain comfortable and can go on safety mode to stop fires.


  1. Buy wheat bags

Wheat bags are cheap and portable can relieve inflammation in most parts of your body.

WheatBag


  1. Wear lots of layers

Wearing lots of layers will help keep your body insulated. The best part about wearing many layers is you can remove a layer if you become too warm and cool down. My favourite piece of womenswear last year was a gilet.  I love the length of a coat, a big collar acting as a scarf but not having my arms restricted.


  1. Anti-inflammatory oils and creams

Anti-inflammatory oils and creams have become my best friend before I even got diagnosed with a chronic illness.  Products with mint, aloe vera and lavender act as anti-inflammatory agents on the skin. I use Doterra oils and LUSH products to help my pain temporarily.  My favourite LUSH products from last year were Rub, Rub, Rub a mint body exfoliation scrub and Sleepy, a lavender cream.  I find oils and creams also help reduce my anxiety, in addition to helping with physical pain.

sleepy


11.Keep an emergency kit in your bag

An emergency kit could be your lifesaver, for those who are prone to falling over. If you are too embarrassed to whip out a first aid kit, keeping plasters, bandages, safety pins, hand sanitiser and anti-disinfectant cream in your bag is a good idea.



  1. Keep straws on you

People often ask me, “Why do you always drink out of straws?”  Wait for it, okay one of the best life hacks I can give you is straws help me minimizing moving my mouth and jaw dislocations.


  1. Find a supportive physiotherapist

A physiotherapist is key to helping you manage your pain. I mean no physio is a miracle worker but getting a physio who understands Ehlers Danlos will help teach you activities to make your body stronger.  In some cases, you may not be able to get a physio who understands or specialises in EDS initially. However, working physios can help train you get on to rehabilitation programmes with specialists at a later date.

physio


  1. Support networks

Ehlers Danlos Syndrome Support networks can help you relate to others with coming to terms with living with your diagnosis. Although, other patients are not doctors they can give you advice on good doctors, mobility braces and help manage your mental health. There are many online support groups on Facebook, some of which do meet ups during the year.  If you are interested in joining a support network, you can get a free membership on Ehlers-Danlos. Org and join EDS UK Central and Greater London for more information.



  1. Take a holiday in the sun

Fr those who can afford it, taking a mini in the heat can help you absorb some vitamin D and relax. You may find some cheaper and cool destinations in the Mediterranean and can find some good deals by looking at the cheapest flying dates on Sky Scanner.


  1. Buy an air fryer

Air fryers allow you to cook meals easily and safely. I use an air fryer to cook sausages, bread chicken pieces, pies, fries, vegetables and fruits. You can buy air fryers for as little as £60 from Curry’s and just need to clean the tray from time to time.


  1. Buy a lamp

If you suffer from photo sensitivity, a standing lamp will allow you to work without straining your eyes but help prevent headaches from having the main light switched on.



  1. Invest in deep instep shoes

Deep instep shoes will create a shield for those with flat feet,  when you walk and allow enough room for insoles. The best in-step shoes I can recommend are leather Doc Martins and Timberlands. These shoes are not cheap – even in the sale but in my opinion they are definitely worthwhile investment.

doc


  1. Buy a neck pillow

Neck pillows are typically a U-shape and seen on long-haul travels. However, a neck pillow can give you extra support and reduce neck pain when you are sleeping or moving around.



  1. Tie your hair up in a bun

Tying your hair up in a bun will reduce moving around too much to get read in the mornings. You can buy a basic bun ring to make the job even easier from most hair accessory shops like Claire’s Accessories.


  1. Plan your route

Planning your route will save you stress worrying about if you will have 4G on your route and more importantly walking around aimlessly in pain.  You can plan your route using my journey planner or simply with Google maps. Also, by buying travel tickets in advance you can save time and money.

map


  1. Use a backpack

A backpack will help balance the weight of the items in your bags on your shoulders.


  1. Enquire about mobility aids

Dependant on your needs you can enquire about mobility aids, such as wheelchair, support braces, medical tape and finger splints.  Support braces, medical tape and finger splints help prevent you from injury, and a wheelchair will help converse your energy. Support braces may be available free on the NHS but you will need a referral to an Orthotics departments.

eds hand


Pin It


Thank you for reading, and I hope my post has given you some ideas to make you or a loved one life easier with Ehlers Danlos Syndrome.

Lots of Love,

my name

 


 

Sharing is Caring

I would love if you shared my post to raise awareness of how to manage better with Ehlers Danlos Syndrome.


Have Your Say

Do you have any life hacks that help you in your life or cope with your chronic illness ?


Like what you see? 

More on the Ehlers Danlos Series 

This blog post is a part of the Ehlers Danlos Series: Covering all things Ehlers Danlos Syndrome!  Related posts in the series include:

My Invisible Illness ft Tramadol

Misfortunate: A Poem about Ehlers Danlos Syndrome

15 Things Medical Zebras have Learnt to Love about their Incurable Illness

16 Things A Doctor Won’t Tell You When You are First Diagnosed With EDS

Through the Nutritionists’ Eyes: (Guest Post)


Social Media

You can follow me on my health journey on:

Instagram

Facebook 

Twitter 

Advertisements

51 Comments

  1. This is a comprehensive list of useful supports, Morgan. I have to invest in some of those anti-inflammatory creams, they sound really useful for that extra bit of pain-relief. Can’t wait til I get my hands on some of those finger splints – currently I have a plastic flesh coloured one for my worst finger, but need three cool silver ones!

    Like

  2. These are such great tips for someone with Ehlers Danlos Syndrome. I can speak for dragon. I used this program at a previous job and it’s awesome!

    Like

  3. I am so sorry you have EDS. It sounds like you are coping the best you can. These are great tips for people living with a chronic illness. I have Ulcerative Colitis which is also a chronic illness. One of your tips could benefit me and that is fhr anti inflammatory ccreams.
    I like that you shared about your EDS here. It is important to raise awareness for medical conditions so people can understand it better.

    Like

    1. Hi Faith, yes it’s many days wasted in bed and just trying to find new hobbies to past all the hours alone . Inflammatory creams are great for instant pain relief. Sorry to hear about your condition too 😦

      Like

  4. Your tips are really helpful here for anyone who is surviving through chronic illness. You have done a great job by writing and sharing this article with us. Thank you for this.

    Like

  5. While I don’t have EDS, my own rare genetic mutation and related health problems has left me in a similar boat for good chunks of my life – so I’m grateful for your ideas. Have never heard of the LUSH creams, but will have to look into. Is Dragon working well these days? – I haven’t used it in about a decade (last time I was truly unable to type for extended periods), and it was very clunky then esp since I was often dictating words in several languages at once, which it didn’t like (so I hope for your sake that it’s improved!). YES for supportive shoes (a must for me!) and backpacks! And lots of pillows for sleeping!!! And I’ve never heard of wheat bags per se but may have to look into! Is it like a moist heat/cooling pack? If so, I may have to look into, if only to get a second one for my daughter (who has inherited my particular mutation, and has been using mine lots lately for her aches and pains…)

    Like

    1. Hi Flossie, I am unsure about Dragon for different language translations to be honest ! Although, I imagine they have updates like Microsoft on the latest versions 😂 I have a broken laptop so don’t have it on there but it is available at University for free. The LUSH creams are definitely worth looking into but just be careful if you have super sensitive skin. I am glad you have supportive shoes and backpacks … I can’t believe I didn’t use a back pack for so long ! Wheat bags can be bought even from supermarkets or amazon they go in the microwave for a short period of time and give you warmth and cool down gradually. They are good when you are at work on the go really xx

      Like

  6. Oooo what a great list!!! While I don’t have this myself, it’s nice to know what would come in handy for those that I do know!!

    Like

  7. Living with a chronic illness has got to be so difficult. Any hacks or tips to help cope with the effects of the illness are so helpful for those who have the same issue. I’ve used the Lush Sleepy lotion myself and love it!

    Like

    1. Thank you Jessica, I know right I would bathe in it if I could 😂 I have been meaning to do a LUSH product haul for ages but I have super sensitive skin so have to take breaks from LUSH sometimes. Xx

      Like

  8. I’m not familiar with the condition but it sounds like you are doing a great job of finding resources to make it tolerable for you.Sending hugs and healing light.

    Like

  9. I suffer from EDS like yourself and even though are use most of these already, this is a good list to help people. I love my wheat packs, my body pillow, natural pain creams, oils, dictation software really makes a difference when blogging.

    Like

    1. Thank you Emma , I don’t that if that is good these things are working for us – of my post couldn’t give you many more useful life hacks. Although , I am glad you stopped by and glad many of these things help you cope with EDS easier xx

      Like

  10. Great list, Morgan, highlighting so many of the needs of we zebras!! I am scheduling to share on PainPalsBlog next week and I might have to add to my collection of DM boots (they last forever and are best thing for dodgy ankles!) with those patent ones! Claire x

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s