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.
So here it goes…
23 Ehlers Danlos Syndrome Life Hacks
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- Buy wheat bags
Wheat bags are cheap and portable can relieve inflammation in most parts of your body.
- 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.
- 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.
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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- Use a backpack
A backpack will help balance the weight of the items in your bags on your shoulders.
- 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.
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,
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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:
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