Pain Management

3 Women with Ehlers-Danlos Syndrome Share Their Favourite Distractions for When They’re Having a Bad Day

To celebrate Ehlers-Danlos Syndrome Awareness Month this May, we spoke to 3 women with EDS to find out what they do to take their mind of their symptoms. EDS is a relatively rare chronic illness and there is a lack of awareness in the medical profession, This unfortunately often leads to misdiagnosis and people can wait years before being correctly diagnosed with EDS.

Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders. Connective tissue support the skin, tendons, ligaments, blood vessels, organs and bones and in EDS collagen – a type of connective tissue is fragile and stretchy, causing pain and digestive disorders, amongst other symptoms. (NHS & Ehlers-Danlos Support UK)

It’s time to help raise awareness of this chronic illness. Hear from some amazing women on how they manage living with EDS and their top distractions for chronic pain are.

Ellen Blunsdon, 22 years old, Edinburgh, UoE Disabled Students’ Officer – hEDS

“I find it so important to have a routine for a flare up. This takes time to develop but once you have one, it’s so comforting to be able to return to my familiar comforts. I love watching TV shows that I know virtually off by heart. These are mainly US sitcoms like Brooklyn Nine-Nine, The Office and Parks and Recreation. Aside from cheering me up with humour, the short episodes mean I don’t have to concentrate for too long. If I try and watch a film I just get confused!

I also find the smell of candles or burning incense really soothing. So I’ve filled my room with smells of lavender and rose. I try not to put pressure on myself to socialise during a painful time. But if I can, I love video calling my friends. Discovering that 4 people can be in a call at once on Facebook was truly a revelation. I always enjoy feeling as though I’m with them, even if I’m just listening to them chat.

My favourite distraction though – sorry friends – is my electric blanket. Heat really helps with my pain and getting into a warm and cosy bed makes me so happy. Buying it was a bit of an investment, but it’s truly the best one I’ve ever made.”

Natasha Lipman, 30 years old, London, Chronic Illness Blogger- EDS III

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WHY I DON'T THINK I'LL EVER FIND 'BALANCE' ⁣⠀ ⁣⠀ The more I think about it, I don't think finding any real balance in my life exists. ⁣⠀ ⁣⠀ And whilst that may sound strange to some, for me, it's very much a case of 'doing anything I want to at all literally means I'm pushing myself too far'. It's like I've made a choice to suffer in order to participate in social, cultural & work life in any meaningful way.⁣⠀ ⁣⠀ We spend so long trying to learn how to find a balance – in spite of the fact that learning how to truly 'live' with chronic illness is all but ignored in a medical setting. So we take our time, obsessively planning our energy spend, saving up for one big blowout occasion or rationing with military precision. But the aim is that those 'crashes' shouldn't be the norm if you properly pace.⁣⠀ ⁣⠀ I'm sure there are some of you who have it down to a fine art – and I am in awe. But having lived with this for 20 years, the last 7 of which being utterly all-consuming, I'm starting to come to terms with the fact that, for me, the balance does not exist. And in a way, that takes a whole lot of pressure off.⁣⠀ ⁣⠀ The only time I can kinda function in a way that I feel somewhat human is when I make my ENTIRE LIFE about my health. All I do every day is focus on resting, appointments, and treatments, saying no to any stress or responsibility. That's just not the real world. And even if it was something I had the luxury of doing (it's not), my mental health would suffer significantly.⁣⠀ ⁣⠀ And there's the rub – a lot of what I do for my own sense of self, the things that bring me purpose and joy, involve me pushing too far. So many HR departments have said to me 'we have a responsibility to your health' and I was like, honestly, I couldn't work if I really listened to my body. ⁣⠀ ⁣⠀ It's difficult to make that choice. And of course I'm not telling you to harm yourself by pushing too far, but I'm slowly realising that 'too far' in many ways is 'anything at all' for me – so the balancing act isn't about finding perfection. Because that doesn't exist. It's about priorities, and that will look different for all of us.⁣⠀ ⁣⠀ 👗♿gifted @misscandyflossoffical @careco_mobility

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“What I’m able to do really varies day-to-day. If I’m entirely wiped out fatigued, I can just about half stare at YouTube. If I’m stuck in bed but have some brain power, I love to play The Sims.

Honestly, I kinda live vicariously through them. I love looking for custom content and mods. It gives me a weird sense of control that I often lose with my health being the way it is. Designing Sims, renovating houses with amazing interiors and then creating fun storylines can kill hours without me even doing anything. It’s a nice way to feel productive and distracted without making myself work!

When I have a little bit more energy, I’m re-learning how to sing. It’s a slow and difficult process. But I always feel so happy afterwards because it’s something that I love to do.”

Sophie Eggleton, Surrey, Blogger/YouTuber/Freelance Journalist/Stylist – Non-Classic EDS

“What I do to distract from it really depends on my symptoms on the day. If it’s a bed rest day I watch shows or films on Netflix/Amazon. Ones that provide a comforting, cosy and familiar feeling. Usually shows I’ve seen loads of times that don’t require too much concentration. Obviously it’s a bonus if it features a lovely face like Mark Ruffalo or Ryan Gosling but that’s not a dealbreaker. I also try and make sure I have a consistent stash of good movie snacks on my bedside for these occasions.

The other day when I was achey but felt I could manage sitting, I turned on my heated blanket to have on my legs, as I sat in the office and embarked on a little abstract painting. I didn’t know what I was aiming to create and it didn’t matter because it was purely for the process. It was about taking time to do something mindful and relaxing. It would also distract me from endless Instagram scrolling ,which would inevitably make me feel sad about a social event I was missing out on.

The other day an online troll had been cruel about the way I look. I’m already a bit self conscious knowing how chronic illness has impacted my body. I started to dwell and allowed myself to get down about all the impacts of chronic illness: mental and physical. But then something inside jolted me to not let it ruin my day.

So I found Tina Turner on Apple Music, put ‘Simply The Best’ on loud and strutted around like a diva, singing my heart out and shaking my top knot with abandon. It’s amazing how music can help to shift your mood.”

What helps you manage your symptoms on a bad day?

Ellen Blunsdon Edinburgh Uni Disability Officer

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