I am at Peace as Long as I Can Dance
Proper and fun exercise can relieve some of the frustration we face with Ehlers-Danlos Syndrome.
By Kash Salem
“The mums at my baby group are planning a 5K road run. It’s a frequent topic of conversation, and naturally, there came the part I had been dreading. “You should run with us” said one of the mums. “No thanks” said I with the affectation of a committed couch potato. “I don’t do running.” She continued to attempt to convince me, and I was forced to admit it, “I’m sorry, I just cannot run.”
The secret is out. I’m a dance and yoga instructor, I am fit, strong and healthy, but if I tried to run, I would last less than 100 metres before the excruciating pain set in. Not long after my knees would give way and it would all be a bit embarrassing. I have an ‘invisible condition’, Ehlers Danlos Syndrome – Hypermobility Type (EDS-HM) with recent campaigns aiming to raise awareness, I am going to share my experience of living with and despite the condition.
EDS is a genetic mutation that causes the sufferer’s collagen to be more elastic than it should be. EDS-HM is relatively mild, and characterised by extremely flexible joints; sadly flexible also means unstable; sufferers are prone to regular sprains and dislocations, the joints wear and take damage more easily than most, because the movement tends to be erratic and outside the “safe” range. EDS-HM sufferers often have other health problems as all our soft tissues are affected.
I was around 11 years old, when I started to get pain in my knees, and it escalated from there. Growing up with hidden health issues is never a smooth ride. I can recall vividly being shouted at, and called a liar by my PE teacher, because I was limping on the other leg that day.
I spent my teenaged years in an environment where sporting achievement was prized above all. I was the girl who wore supports on both knees, long socks instead of tights so I could more easily adjust the straps that held my kneecaps in place, this did not work out well for me socially. On the other hand I missed double German every week to for physiotherapy.
As an adult I adapted to my personal capabilities. I’m in pain every day. My knees creak and rattle from the damage caused by the joint surfaces mashing together at awkward angles. I have a running joke about how I fall down the stairs. There is a particular point where my knee is bent and it just can’t hold anymore, it collapses, and down I go! I always cling to the bannister to take the weight off at that crucial point. Occasionally I find myself approached by someone ascending the stairs, and awkwardly have to choose between facing them down and appearing rude, or letting go of the rail and falling on them!
I have instability in my wrists, ankles, feet and hips, which means I get sprains quite a lot. My hands are always stiff and sore – the medical advice on that was to use my hands less! I bruise easily which does not combine well with the clumsiness that results from wobbly joints. I am very grateful however, that for the most part I can move quite normally within the boundaries that have become second nature to me. As a teen I was told I could expect a wheelchair in my future, but although I use a stick on a bad day, it happens rarely enough that people ask me what I have “done”.
It’s not all gloomy. As a dancer my natural flexibility serves me well, provided I support it with strength. The right kind of regular training actually eases my condition. Here are my tips for exercising with hypermobility.
- Alignment is crucial. I love gentle yoga for achieving strength in good posture. When you practice regularly you carry those good habits into your everyday actions.
- Impact and load bearing in exercise are tough on joints. I am able to do Arabic dance but I could not dance ballet.
- I always warm up properly, mobilising all the joints, locating the muscles that support them, and establishing good posture. I start my movements small and explore the limits of my safe range of movement safely.
- It is really important to have symmetry in strength training. Poorly balanced muscled drag joints out of alignment.
- Good footwear is essential, as hypermobile feet are prone to fallen arches. All of my footwear is supportive or equipped with insoles.
I listen to my body and I am aware of my limits. If I get injured, I rest. I understand that I will never run, or do star jumps; but I am at peace with that, as long as I can dance.”
Kash has a plan to manage her EDS. At the same time, she can help others have fun and promote EDS Awareness.
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