EDS - dance and conditioning as physical therapy.

I've spent most of this year working very hard on my cross training, as well as general drill and practice schedule. I've written about what that means in dance terms (tldr: many good things) but I wanted to look at it from another angle.

I've written before about Ehlers Danlos Syndrome. It's a genetic disorder that affects my collagen structure and causes all kinds of fun complications, most of which are invisible to all but those closest to me. In my case, the most invasive symptoms are joint instability, the subsequent injury that causes (sprains, dislocations etc), chronic pain and fatigue.

I like to think of it a bit like this: Imagine you are building a machine, like a car, but where you need cable ties (it's a cheap car) you only have rubber bands, and where you need gaffa tape, you have elastoplast. It's not going to function quite right in a variety of different ways.

It is well understood that certain kinds of physical therapy are good for EDS patients. I had a lot of physiotherapy as a teenager,and some in my 20s but none of it really stuck. Then earlier in the year, I watched this lecture. It's long, but interesting. I'm going to summarise the bits that I found really relevant to my practice.

One thing that really struck me was that they felt that general physical therapy was just as effective as targeted therapy. For me this was super-good news. I have a whole catalog of really boring PT exercises I am supposed to do, but I never do. Why not? Because they are dull. It might sound like no problem to take time out 5 times a day to do 10 reps of a basic exercise, but it never happens because there are better things in life.

"I have never met an EDS patient who can ignore the pain and exercise in the gym and be successful at it" Jan Dommerholt

In the video they talk about an external focus. So that patients aren't exercising just for the sake of it, or even thinking about what muscles they are using or where there body is, they are doing a task where correct form is built in, but the goal is something far more compelling (you can see some examples of the speakers' less conventional PT tasks at about 35 min).

Another issue I have experienced this year is the notable lag in progress of my EDS symptoms behind my fitness. I have never in my adult life managed to push through to the point where my joint stability is good enough to match what my general strength and fitness is capable of.

For example, after about a month of daily interval training, I was feeling a lot stronger and healthier, but I was still having to modify some exercises to reduce the impact upon my joints. I kept at it. After 8 months I was finally able to do jump squats and burpees (putting aside a brief point where I let my burpee form slip a bit and ended up having to splint my wrist 24/7 for a month). For most people doing a jump squat is about having muscles strong enough and fast enough to get off the floor, for me it is about having enough stability in my knees not to collapse like a marionette when I land - and that was the hard part. I could do 80 standard squats a day for months before I was able to land a single jump squat.

It is also known that the gains from PT will drop off very quickly if you stop, which is something to consider when dealing with illness, injury or rest periods. In my summer dance-downtime this year, I continued with my fitness training for this reason.

Pain is the last symptom to go, and it never reaches zero. Well, that's depressing. And that's another reason why it is really hard for people with EDS to motivate themselves towards PT. My pain levels have reduced, inasmuch as I don't get particular pain from injuries, slips, trips and wobbles quite so much. The general background aches are still there. The truth is though, there is improvement. Marked improvement, but it is taking work. A short while ago a quote was posted on a Yoga for EDS forum I subscribe to: "he is in so much pain he has to exercise all the time". It's kind of perfect.

My programme

So I want to write a little about the parts of my training which I feel are having a positive impact on my EDS symptoms - it's just what is working for me, everyone's body is different, this is intended as reflection, not instruction. A summary of what I am learning on this year's fitness journey.

Feedback

So the most important thing I came into this year with, was an understanding of my issues. I analysed my posture meticulously. I watched videos of my dance practice and performance, I asked other dance teachers to do a postural analysis on me and I had a session with a physiotherapist for the same reason. With that in mind I started out aware of potential pitfalls, weak spots and problems to "fix".

I have/had: A deep lordosis in my lumbar spine, swayback, femoral torsion with a weakness in my external hip rotators which worsen that, pronation on my left foot, supernation on my right, plantar fasciitis and a few other fun things. A lot of work has gone into all of these and my posture, movement and proprioception are all improving - but that couldn't have happened nearly so well if I hadn't been aware of what to look out for from the start.

Another side to feedback that is important is observing my dance, either on video or in studio mirrors, and being aware of my alignment from an external perspective. People with EDS usually have poor proprioception (the sense of where the body is in space). You can train proprioception, but I have to be constantly mindful to keep my lines healthy and avoid "weird" and unnatural-looking joint positions.

Yoga/pilates

Some people get twitchy about yoga and EDS, because they think that yoga is about being bendy, and EDSers are already *too* bendy. When I practice yoga I am concentrating on good alignment and strength through postures and flow. EDS comes with poor proprioception, we often don't really know where our body parts are unless they are at an extreme of their range. Yoga is about being really conscious of that, and developing good movement patterns which become habits we carry into our daily lives.

Pilates has a lot in common with yoga, but with more ability to spot target and strengthen muscles. Pilates tends to be intense and is often about doing a few reps in good form, which makes it initially quite accessible. My physiotherapist runs clinical pilates sessions, which are a great option for anyone wanting to try it out while keeping a joint condition in mind.

Walking

One of the most basic exercise therapies suggested for EDS is 30 minutes walking a day. That's a good amount of walking, certainly enough to call yourself active for the sake of cardiovascular health etc. The great thing about walking is that you can choose how to pace yourself. If it takes 30 minutes to get to the end of the street and back, it's still 30 minutes walking, right?

I usually walk on a flat surface, like a pavement, although more recently I have been branching out to some cross country things. Uneven surfaces carry risks of wobbles which means ankles, knees, hips, falls, all that drama.

Finding motivation to walk isn't so hard. I started by walking the school run, or just walking into town and back. Then I got a puppy. Now I walk her. Walking with a dog feels much more purposeful. I like going places with her. I've just about doubled my daily distances as a result.

Kit for walking is helpful. I started out using a hiking pole when I am going off road. "Hiking pole" is sports for "walking stick for wobbly muppets who fall over in the mud too much". I find the difference it makes is phenomenal. I have mananged to avoid using a conventional walking stick for about 3 years now, but I used a pole religiously on rough ground while I was developing strength in my walking habit, and continue to use it on wet days or if I'm feeling a bit weak.

The other important thing is shoes. Shoes are a big deal for me generally, they have to be right or I end up with fallen arches, plantar fasciitis, odd dislocations in my metatarsals, all sorts. I started wearing trainer style, low top walking shoes for all my walks. I found them lacking on wet ground. I have old fashioned leather hiking boots, but I find them too restrictive, my feet can't flex and I get cramps and my joints ache for lack of movement (moving joints is really important for keeping the synovial fluid levels at their cushiony best). So I invested in some soft, high top walking boots and they are great, enough flexion in the sole to keep my feet busy, but loads of ankle support.


When I walk I also think about alignment and posture a lot too, just like a do when I am dancing. Is my pelvis level and stable? Are my toes facing forwards? Are my knees tracking over my toes?

I've noticed that the strength training in the pilates and yoga, as well as the more intense interval training, has changed the way I walk, I'm using more muscle groups now and my gait is smoother. I notice these things because I am a movement geek.

There are other parts of my training that are less relevant to my EDS, like weights, interval training and dance practice. Those are all happening too, but doing those parts is the goal, the stuff above is what keeps me well enough to get there.

Keeping track

One of my most surprising discoveries was how useful it has been to use a fitness tracker. I use a Fitbit Charge HR, which I find best for picking up my non-stepping exercise like weights and dance (when my arms are isolated and most of the effort is not in my feet)


So why is this so useful?

First off, it makes me be active every day. It is very easy to have a slack day, then let that drift into a slack 3 days and before you know it you are losing strength, getting wobbly and falling down the stairs again. I am naturally a bit goal driven, so I do make a point of hitting my daily goals and doing this consistently has definitely made me more active and stronger.

The thing that I wasn't expecting to make an impact on my EDS symptoms was the calories in/out tracker. I knew I had a problem with how I was eating on heavy training days. The disruption of travelling, dancing all day, taking short breaks with unusual sources of food etc was clearly problematic. Like many EDSers my digestive system likes routine and I would usually end up with stomach cramps etc due to the disruption. I also used to crash badly the next day. Total fatigue, brain fog, sometimes migraine.

I'd put this down to having exercised/pain managed hard the next day and just having no spoons, but when I started tracking my calorie intake, I realised there might be more than that. On my heavy dance days (and this means teaching/rehearsal days as well as taking classes), I was undereating terribly. It is quite usual, on a Monday, when I run a full morning of classes with rehearsal inbetween, for me to end the day having expended up to 2000 more calories than I consumed. No wonder my body was screaming for downtime after that!

The counter problem to that was that on my rest days I was using half as many calories and eating more. So basically my fuel system was completely upside down.

I use an app on my phone which allows me to record my intake throughout the day, and lets me know if I am on track according to what I am doing. This means I can not only match my intake to my output on a daily basis, but throughout the day, which gives me much better balanced energy levels. This in turn means I am much less fatigued the following day. Energy levels are also really important for pain management. Low blood sugar saps willpower.

Daily goals mean that I am more consistently used to being active, and that has helped a lot with training days too, they aren't such a shock to the system! I still have pain to manage, serious training does still give me a bit of a "hangover" but it is much, much better.

The dreaded injury

Injury is an inevitable part of living with EDS. PT can strengthen and stabilise the body, which makes it less likely, but eventually it will happen.

There are some things I can live with, like my right hip that jumps in and out of place like it's doing the joint Hokey Kokey, or "The Claw" when my hands just seize up from overuse. Other issues can cause more disruption.

This time last year I wrenched my shoulder (while feeding the rabbits, because of course I did). It took a very long time to work through all the issues this caused in my neck, shoulder and upper back. Spraining my wrist meant no burpees for a while (there's the silver lining). I also couldn't plank properly for a while, I had to modify to the elbows.

Earlier this year I managed to sprain both ankles, which caused a whole cascade of issues.

I had so much to say about how I cope when I have an injury, that I decided to put it into a whole separate post.

The final word

So I'm going to wrap this up here. The last year has been quite a journey on a number of levels. From a health/EDS perspective I was determined to see what my body was capable of if I cared for it, ruthlessly. It has exceeded my expectations. A couple of times last week on a dog walk I climbed Glastonbury Tor twice in a row (and went around the base inbetween) with absolutely no extra issues afterwards. This takes constant work though. I have to exercise every day, regardless and that takes commitment and scheduling.

Dr Dommerholt is correct. The pain doesn't go away. But it doesn't go away through rest either, so that's not part of the equation. Being stronger, more physically able and a better dancer has been worth the effort.

EDS affects different people in different ways, and I am very grateful that I have the ability to access this kind of training, many sufferers would struggle with the basic programme I began with, and I certainly wouldn't expect many people to be as driven as I am. Dance is one of my greatest priorities, but I have that luxury because it is also my job.

However, accessible activities are a great thing - I currently have plans to start a low-impact dance class for less able dancers - moving, in a safe and level appropriate way, motivated by something other than simply getting the exercise done is an excellent tool towards health and wellness.

May is EDS awareness month, so this seems like a time to write a bit of a post about dancing in a less-than-perfectly-functional body. I wrote a post a while back, originally for Yahoo Lifestyle, limited by their requirements, so I'm welcoming an opportunity to return to the topic from another perspective.

EDS is an inherited disorder that affects the soft tissue. I have Hypermobility Type which is a milder version characterised by extreme flexibility and therefore instability in the joints. There are various effects on the nervous system, digestion, skin etc, but the most noticeable effect is joint pain, frequent dislocations and fatigue.

While my previous focus was working around physical limitations, and staying healthy while dancing, today I want to focus on the psychological side. It is well understood that dance can do wonders for our psychological well being, from body confidence, to warding off depression and mental health issues.

Living with chronic pain or physical restrictions can be a war of attrition against your self esteem. It's very easy to become hung up on the things you can't do, or the times when your body can't meet your aspirations. Of course this can happen to anyone, regardless of their state of health,  but the more often it happens, the more frustrated you become and the more averse to trying again.

I grew up unable to consistently participate in sport, in a culture where athletic prowess was social currency. I spent my teenage years taking painkillers and throwing myself into endurance sports, where grit and determination would get me through. It made me tenacious, but it also left me with a lot of sprains and subluxations, because that's not what I'm made for.

Discovering dance was another matter. The great thing about Raqs Sharqui is that the movements, when executed with good technique and mindful alignment, are not damaging or extreme. The core stability afforded by regular training helps me to stabilise my joints, so this dance is physically good for me. There are some aspects I struggle with, you'll rarely see me use very deep level changes for instance, but I don't need to, the beauty in the dance doesn't come from increasingly challenging physical feats but through connection and expression with the music.

Learning to dance gave me an opportunity to feel good in my skin, which is an incredible blessing when your body feels like an inconvenience the rest of the time. As part of Dancing with the Red Goddess, I encourage dancers to do an exercise/meditation in body positivity, where they come up with a list of things their body can do. Dance is something my body can do, and I do it every day,  to keep strong and healthy, but also to remind myself that I can.

It restores the balance. I can't do some things most people can do, but I can do this one thing, with my body (besides the hilarious party tricks involving joints that move in entirely the wrong direction) that most people can't. There is satisfaction in that. It reminds me that differently able does not mean lesser.

There is enormous freedom and triumph in dancing despite the pain and fatigue.There is enormous therapeutic effect in finding artistic expression, strength and beauty through a medium that should be my most restrictive. Every movement is a poke in the eye for a condition that still makes it hard to move off the sofa some days. Dancing has taught me to care for my body better, because I need to be on my best form, because it is worth taking care of.

I have met some amazing people in the dance community. People who remind me why I need to keep dancing, people who keep it fun, and people who show me how to enrich my life through dance, even when I am not dancing.

I teach dance to all kinds of people, with all kinds of ability levels. I teach general classes, but also classes and workshops for pregnant, elderly or disabled dancers (including chair based dance). I do this because I truly believe that the benefits of dance, physical and psychological are something that everyone deserves to access.

Dancing with Hypermobility.

In August 2014, the Yahoo Contributor Network was shut down. All the copyrights to articles thereon were returned to their authors, so I decided to publish certain articles of mine, originally written for Yahoo UK on my own blogs. This is one of them.


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.


More information about EDS can be found here http://www.ehlers-danlos.org/