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Get Moving Safely with EDS

Writer's picture: LeanneLeanne

Updated: Jan 30




Imagine for a moment: lying in bed, knowing that any second now you will need to get up to walk to the loo and you are dreading it, as any movement will feel like wading through quicksand infused with jellyfish tentacles. Even turning over in bed, you run the risk of leaving a shoulder behind or slipping a kneecap out of place. Knowing your family are downstairs and you’re up there alone with only the TV and your phone for company. You feel such longing and pressure to join them but your energy will be zapped just from that trip to the loo…


You may not need to imagine it as this might be you right now or in a not-too-distant memory.


And then you see a doctor and they say in frustration “you just need to exercise and lose weight” as they have no further options for you other than more antidepressants and painkillers. So you push yourself to find a Pilates class – as that’s what your consultant told you to do. And you arrive having completed the health forms, maybe you lied and kept things to a minimum as your list of ailments could write a book, and you are greeted by an instructor who looks a bit fearful and says “just do what you can do”. You try some moves, you cry as the pain is so bad, you may even injure yourself and then you drag yourself home, back to bed – suffering, embarrassed and dejected and feeling like you never want to move again.


I’m sure you are relating to this right now, or from past experiences. Getting yourself moving is so tough. Finding exercise that can genuinely help you and not set you back with injuries or pain and fatigue flares can feel impossible. I’m here to say that I have been there – where you are, or may have been – spending 22 hours of the day in bed. Only getting up when my mum came home from work to make me lunch. If I was lucky, some days I’d have enough energy to be driven to the beach and sit on a bench to get some sea air. And this was in my 20s when I should have been out working, having fun and being with friends.


Now, amazingly, I work in the fitness industry. I trained to become a Pilates Instructor and set up Mobilates so that I could help other people like me access exercise in a safe and adapted way.


Pilates helped me so much, but I was the one crying my way through a beginner’s course. Even getting up the stairs to the studio meant that I needed to lie down until the dizziness and nausea eased. I dislocated my shoulder when I moved on to Lite Pilates and completely freaked out the instructor who was already a bit wary of me!


But – with perseverance, a really knowledgeable and supportive Pilates instructor and time – I managed to find a way to build strength in my muscles so my joints were better supported. I increased my exercise tolerance so that I could walk further and stay upright longer, my pain decreased massively and I started to live life more fully.


I knew that I could use my experiences to teach accessible Pilates and plan classes that would help people with mobility issues and chronic illnesses like EDS, MS, arthritis, fibromyalgia etc with their functional movement, reducing pain and increasing energy. I hoped that if these classes were taught by people with lived experience of pain and disability, people would feel reassured and even inspired to get moving. I wanted people to feel like they could get their lives back and start thriving instead of surviving. I now teach multiple classes a day while running a business and home. I never even imagined this was possible, and somehow, despite my long list of diagnoses and issues, it is my reality.


From my own experiences and those of our marvellous Mobilates members, we have put some tips together to help you get started safely with movement.


Start where you feel safe and supported

This could mean many different things to each of us. It could be from the comfort of your bed or chair or finding a class taught by understanding instructors online or even in person. Whatever your starting point is, even if it is pointing and flexing your feet while lying down or popping into an online class for the first 10 minutes, this is 100% progress from not doing anything at all.


“Being assured that you can stop and rest at any time and still feel that you have had a great class was key for me when I started. Feeling able to ask questions and check on things during class with no judgement or embarrassment was great also. The fact that Leanne adapts her classes to take into account everyone’s needs is something I have not experienced before. Mobilates is unique in its approach and supports everyone as individuals.” (Mobilates Member Michelle)

 

Take it gently

When you decide to get started, it can be so tempting to really go for it and push yourself too hard. A gentle and slow approach to whatever you choose to do will benefit you so much more in the long term. Taking breaks, leaving early, dipping your toe in is such an achievement. You may find you are able to do the class fine at the time but if you push yourself too hard, you may take longer to recover, and it could set you back.


“When getting started, which is sometimes over and over again after a flare, I try to remind myself not to go ‘too hard’ and follow Leanne’s guidance – “Just because you can, doesn’t mean you should”” (Mobilates Member Rachel)

 

Find the right activity for you

I bang on about Pilates all the time because that is usually what physios and consultants recommend but it needs to be something you will enjoy. You might prefer swimming or horse riding, or even skiing. Whatever it is (hopefully something that will bring you joy so it is sustainable), please make sure you are supported by knowledgeable instructors who know how to keep you safe. They don’t have to be experts in working with people with EDS, but a bit of knowledge on how not to hyperextend would be a good start. And if they even whisper the words “no pain, no gain” please walk away!


The right instructor will:

  • Give you a private initial consultation

  • Listen to YOUR challenges and goals

  • Provide reassurance they can adapt for you

  • Be honest about their experience and limitations

  • Keep an eye on you and remind you to watch your range of movement

  • Give you the space you need to rest, adapt or leave early


“Mobilates is the ONLY exercise I have continued doing consistently for more than a few months. Online classes are so convenient, removing the time and effort of travel, as well as much of the self-consciousness of physically being in a space with others. But because of Leanne’s care to ensure she can see us all properly, together with the community aspect, I still get the benefits of an in-person class, i.e. the camaraderie of the Mob and the safety of an attentive teacher (particularly important when I have been recovering from injuries).” (Mobilates Member Sophie)


Consider using braces and props

We can at times feel a bit like Robocop with all the knee, shoulder, wrist and finger supports, and I understand turning up to a fitness class wearing them can feel a bit daunting. Being scared and tense may cause you to move stiffly and hold your breath which can cause injury. If you feel like you have an unstable joint that needs supporting, it won’t hurt to use it until you feel more stable. Ask in the online EDS UK support groups for recommendations for braces that could help. Ask the instructor if any props might support. We often use soft balls and bands to help you feel a movement more and let you know when to stop, cushions and extra thick mats for comfort, and belts to enable lifting of legs. You may find all-in-one compression gear can enable you to get in and out of a pool safely, or using a chair in a class can help you stay upright for longer.

 

Watch your range of motion

“Just because you can doesn’t mean you should”. We say this a lot in Mobilates classes! Just because you can bend your knees and elbows backwards at the same time as resting your head on your shoulder, doesn’t mean it’s not going to cause issues if repeated. These are a couple of tips to consider:


  • Neck – use your hand or a soft small Pilates ball to remind you not to hang it down near your shoulder

  • Arms – soften your elbows, try not to let shoulders hang out at the socket, keep your hands where you can see them

  • Knees – keep them soft but not too bent and do sit when needed

  • Back – try not to hunch, or hang back in your pelvis. Just because you can touch the back of your head to the back of your heels doesn’t mean it is safe for your spine

  • Hips – when standing on one leg, avoiding dropping into or hitching up your supporting hip

  • Keep your moves slow, small and mindful, so you are less likely to hyperextend and more likely to maintain a range of movement that you can control



If you would like to start moving safely, Mobilates would be delighted to support you with a free consultation and trial for live, online, accessible classes. We have understanding instructors and a gorgeously supportive group of members who we call Da Mob ready to welcome you with open arms. Find out more at www.mobilates.com

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