Since my fling with optic neuritis, a lot in my life has changed. I’ve lost a lot, and its been pretty tough trying to accept the things that I can no longer do. With this loss comes depression, and between this and my physical decline it becomes near on impossible to find the joy in life.
Once you have time to adjust to the life you now have, it is surprising what sort of things come into your life to take the place of your previous interests. These are by no means a replacement for your old passions, but they are seedlings that just may grow into the next thing that keeps you going in your darkest hour.
When I lost the ability to dance, I was devastated. My whole life centred around setting myself free in that studio. Every good day, every bad. No matter the weather I was there, ready to put my all into every step. It was the only physical activity I enjoyed, and a never thought I would find a replacement. However, after a rough couple of years, something that feels absolutely amazing has crossed my path again – and that something is horse riding. Yes – horse riding!
I would never have thought about this sort of activity if it wasn’t for a neighbour of mine. She has hyper-mobility, and maintains its the thing that keeps her well. So, after months of her casually mentioning it (and me brushing it off), she finally dragged me along a month ago and persuaded me to book a lesson. I had my reservations, and was worried I wouldn’t even manage to get on the horse, let alone be up to riding it. I wasn’t sure what my POTS would be like, and getting dizzy or faint when on something so high up was a scary idea – but thankfully this hasn’t been an issue. I started off with the idea of just having one lesson, but now it seems that I can’t wait for the next week to swing by so that I can have an hour of freedom where my disability doesn’t get in the way of my enjoyment.
I never thought I would find another physical activity that felt as good as dancing.
As far as the effects of my illnesses on top of a horse, there are a few things that I notice. As far as POTS goes, its actually a pretty good type of exercise if you are ok sitting. Its basically a sitting down type of exercise, and as such, I don’t find myself getting faint, dizzy or spaced out like I do when I’m on my feet. It also gets you really working your leg muscles, and I think this also helps with getting your body circulating your blood back up to your heart much more then other types of exercise seem to.
With Ehlers Danlos Syndrome its a mixed bag. In the long run, the muscles that you work will strengthen hugely, and it really works the insides of your legs, which for me are muscles that really don’t tend to work properly when I walk. In effect, it can eventually balance out and strengthen your leg muscles, which should hopefully stop things subluxing and dislocating as much. It also really strengthens your core – I don’t think I’ve needed my core anywhere near as much as I do to balance on a horse, and in the long run, I think this will be a big positive. This type of exercise constantly moves. Although I work hard, my muscles don’t tend to get as tired as I would expect, and I think this is because I am not needing to hold a fixed position when I’m working. Weights at the gym have never suited me as my muscles fatigue quickly, but because I am constantly engaging different muscles, it seems that no one muscle set gets overworked which is a big plus!
On the other hand, it does have its downsides. For me, the biggest of which is that my hips tend to pop out of place within the first 5 minutes of getting onto a horse, and this is pretty painful! I tend to just keep riding as I know that even if I got off and popped them back into place, the same thing would happen as soon as I got back on. My knees and ankles are also vulnerable to subluxing when riding, and again this does hurt. I am just banking on the idea that it will strengthen them in the long run and so will be worth the initial pain. It is also hard work – I am using muscles that I never knew I had, and engaging my core when I have been largely inactive for the last 2-3 years is no mean feat.
Its not easy to get myself there on a bad pain day, but it never ceases to make me feel better by the end of the lesson! The sense of achievement I get from a good lesson means the world to me, and spending time around such intuitive animals is extremely therapeutic. No matter whats gone on in the week, it all gets left at the door, and 100% of my focus goes into that lesson, and that horse. After all, the minute you get distracted that horse will pick up on it and will stop doing the things you need it to do.
At the end of the lesson, I do end up wobbling about looking a little on the drunk side until my joints pop back in and my muscles acclimatise, but its totally worth it, and no matter how much pain I’m in, I have the biggest grin on my face for hours afterward.
For me, this is something that works. Remember that I’m no doctor, and that it may not be suitable for you – we are all different. However, never rule things out. We can do so much more then we think we can – sticks, wheels or pain, it doesn’t have to stop us finding things we love to do. Never stop searching for the things in life that make you happy. We deserve it as much as anyone else, and EDS/POTS doesn’t mean we can’t find the joy in life.
Be brave, and find that ‘thing’ that makes you forget your ill.