Apologies for the lack of posts recently. I’ve been focussing really hard on trying to stay away from technology as much as possible, resting, reading, and trying to exercise.
I spent my life trying, failing, and greatly injuring myself whenever I tried to move. I had to have letters to get me out of PE since I was 9. In fact, one of my most traumatic childhood memories was when I was forced to run the cross country at school at the age of 10. Knee supports on, I managed to run the tiniest bit and then walked the rest of the whole damn thing. I finished last out of the entire school (granted my school was a tiny building no bigger than a house), limping and crying hysterically. My PE teacher “ran” the last part of the track with me, all the parents cheered and I got lots of hugs.
At least I finished it.
PE classes at secondary school were also tough. I still had to take part. Forcing myself to walk the 1500m, throw a javelin, play lacrosse. I got out of Sports Day a couple of times, but the school nurse always sneered when I handed in my letter. She even called my mum once to make sure it was a genuine letter because she didn’t believe me.
It wasn’t that I was lazy. I was just in so much pain all the time. But I didn’t have a diagnosis so nobody understood. I guess it was hard for people to believe me when they couldn’t actually see what was going on.
They got it when they could see my knee hanging out, and when my friend Lucy used to push me around the corridors in a computer chair (hey Lucy!), or when something else super acute happened. Like slipping down concrete steps at the back of Harrow on the Hill tube station, skipping three, landing hard slap bang on my bum, and slipping three disks in my back. You couldn’t really deny that there was something wrong when I was walking entirely bent over and twisted for half a year. That was a fun way to take my GCSEs.
But when I told them the painkillers didn’t work, again they didn’t believe me.
In the words of my dear grandma: “you’re too young to be in pain”. Yes, I am, but it’s the reality of my life, and until I had that diagnosis, I didn’t understand why or how. It meant I had nothing to tell the people around me why I couldn’t do what everyone else my age could.
The day I got diagnosed with Ehlers-Danlos Syndrome at the age of 21 I just burst into tears.
As a result of my inability to exercise, my need to spend a lot of time indoors, not being allowed to take part in things like other people, and my predilection towards comfort eating, I also always struggled with my weight. For reasons which deserve a whole other post, societal standards often lead people to think that if someone is overweight they are lazy. So I had to contend with my physical appearance informing the way people would react to my inability to exercise.
At the time, the most I would do (grudgingly and with my mother yelling at me about them every day) was my exercises given to me at my seemingly never ending physiotherapy sessions, or half an hour a few times a week in the hydrotherapy pool.
Swimming at the time was actually the one thing that I could do without pain. The water helped me so much, and for most of my childhood it was something that I didn’t dread having to do.
I stopped swimming in my teens, and didn’t try again until my early 20s. I’d hired a personal trainer at my local gym because I wanted to “get in shape”. I’d have sessions three times a week and go swimming on the other days. I suddenly found that my shoulders started to hurt me. I’d never had shoulder pain before, so it was a strange sensation. I was so used to speeding up and down the length of the pool for ages, but now one length was causing me agony. It turned out that my back was so stiff, my shoulders were taking on the pressure from my back. And so I had a new problem. I also had to stop the personal training sessions quite soon after that because the trainer simply didn’t understand my body, I was working out too much (the wrong way) and ended up causing myself more damage in the long run. While I’m sure there are a lot of great personal trainers out there, it’s just like nutritionists, bloggers etc. We are all different, and people often find it hard to think beyond what they know or believe to be right, and can end up hurting other people because of that.
It took me a long time, and it’s something I’m still working on, to realise that I needed to treat my body differently to everyone else. Even if I knew it in theory, it’s hard to put into practice. You read the nonsense fitspo that says things are in your head, and you see pictures of your friends all over social media looking gorgeous in their yoga gear twisting themselves all over the place and you want to be able to do that too, even if you’re just simply not built to do it.
And with that goes the concern that, again while I know better, is hard to accept: weight is always going to be an issue for me. Growing up overweight is always going to have that an impact on how I feel about my body and the way I look after it. The only time I ever got really slim and then skinny was when my body shut down and I couldn’t eat for six months. I never thought I’d be able to look like that. But, it only happened because I literally didn’t eat. It’s not exactly a realistic or healthy way to live your life.
But I’m slowly teaching myself that more important than the way my clothes fit is trying to find ways that I can exercise and make my body stronger. The stronger my joints are, the more I understand my body, the less pain I am in in the longterm. And hopefully, the more able I am to go out and work and live as much of a normal life as possible. It has to be about management over anything else. A shift in priorities, a shift in mindset.
Over the years I’ve tried to do all the things that my ‘normal’ friends have done – HIIT workouts, trying to push myself to the extreme, hours of pilates, restrictive dieting. Inevitably, I ended up injuring myself, because my focus was always on trying to lose weight and not strengthen my body in a safe way for me.
This year has seen a change in that.
In January, I started seeing a private yoga teacher through Triyoga in Camden. She also has EDS and it was so incredibly refreshing being able to spend time with someone who understood all the millions of quirks that my body had. I loved our sessions, and found them extremely relaxing.
After a few weeks she recommended some classes at the actual studios that I could potentially try. I set a whole yoga schedule up and decided that, since I was taking some time off of work, I would become a total zen yogi. And the very first yoga session I went to at Triyoga in Chelsea, I ended up popping a rib out for the first time. I wasn’t even doing a move…I was moving a bolster in a restorative class. But hey, such is the life of an EDS-er, right?
Instinctively I knew that yoga probably wasn’t for me. While I absolutely loved my private sessions, it was more about how relaxing I found them than I knew that it was the best thing physically. Yoga is all about stretching and pulling as far as possible. I don’t need to become more flexible – if I stretch my arm it doesn’t want to stop. And the twists and everything I’d been doing had ended up causing me more problems.
But I was still determined to find something that was right for me.
I’d been advised by my osteopath to not do anything for a few weeks except walk. This was something that I had to build up slowly. I was used to that – I’ve spent many an hour grasping onto someone’s arm, walking two houses past my own and having to go back. But it’s surprising how much, with perseverance, you can build up.
I started walking for 5 minutes, then 10, then 20, then 30. I now have a daily goal of walking 10,000 steps. This is especially important because I do live quite a sedentary life. If I’m at home resting all day, I don’t really go out, or need to move around much considering I live in a flat. Bedroom-kitchen-bathroom doesn’t really add up to that many steps. And working from home means that you don’t even get the exercise of a commute.
I purchased a Jawbone Up, which I wear on my wrist to help me track my steps. Most importantly, I’m not rigid about it. Now that the weather is better, my joint pain is more manageable, but I need to be sensible. I try to walk as many steps as I walked the day before as a minimum. I’m responsive to my body. If my knees are too weak, I’m exhausted, or in agony, I walk as much as I can, but I don’t push myself to the point where I’m causing myself more damage. Walking has also worked wonders for my brain. I find it really hard to shut it off, and just being outside in the sun, walking with some music is doing wonders for my general mood.
I also wanted to try and find a gentle workout I could do from home. After talking to my osteopath, we decided that yoga was definitely off the table, and pilates was a maybe (I’d totally overworked some of my muscles because of pilates) and that barre might be a good option.
I’d taken a few classes last year and absolutely loved them, so I thought that I would try again. I found a ten day trial at Sleek Technique, which I thought would be a great introduction to see if this was for me.
And so far, I think it is.
The easiest way to describe it is a ballet-based workout that also includes elements of pilates and yoga. What’s so great for me is that there’s a massive focus on tiny, isometric movements to build muscle, and then stretching moves (which my poor hamstrings definitely need). And who doesn’t want to pretend they’re super graceful? I feel so great doing barre, until I catch a glimpse of myself in the mirror and realise I’m not quite there yet!
Because I’ve had 26 years of living in my body, I’m at a point where I’m extremely self-aware and know what moves/stretches are not right for me, and how to adapt them to make them safe. So when I do a streaming workout, I tend to watch it through once before I do it to see if a) it’s one I should be doing at all, and b) when I may need to adapt a move. What’s so great about Sleek is that they actually do live classes over webcam, so you can see the teacher live, and she can see you. Beforehand I made them aware of my issues, and throughout the classes I was constantly being given modifications, warned when not to overstretch and corrected on my posture to make sure I was exercising in a safe way. While it is a bit embarrassing, when everyone else can do one thing and you’re being told something else, it’s really important to get over that. And this is a life lesson that has been really important to me: that extra attention, care and modification in all aspects of my life just put me on an even playing field with everyone else. And that’s only fair. It’s nothing to feel guilty or embarrassed about.
I did get a bit overexcited at finding something that was working for me, and did what I always do and overdid it, trying to workout every day on top of walking. That led to a mini crash, so I’m aiming at focusing on my walking and adding in a few barre classes every week with a day to rest in between as I build up my strength.
I’ll definitely keep writing about how this goes over the next few months. What are your favourite ways to exercise? Oh, and just a bit of a disclaimer, while I’m writing about exercise programmes that I try and may work for me, all our bodies are different. If you have a physical condition, please do get advice from professionals before embarking on any new exercise programmes.