So, you’ve been diagnosed with a rare disease, perhaps you are unable to do some of the things that you used to be able to do, or you are worried that life will change and aren’t sure how it will play out for you, that life as you knew it is over. Maybe things have been slipping for a while, a gradual change in what you are able to do. For me it took a while to come to terms with the first ‘big’ diagnosis, I took time to grieve, to get my head around things. The second big diagnosis I handled in a completely different way, it was a relief. Whatever your particular set of circumstances, however it might make you feel I’m here to show you that it’s OK and often there is a way around things.
What I have learned, and it has taken me a long time, is that it is all about mindset. If you think that you can’t do something then you definitely won’t be able to do it, you have to develop the ability to think out of the box a little. Be creative. Since I have had this shift in my thinking I am much more content with my life, I’ve accomplished more and I’m generally able to stay more well. I’m not suggesting for one minute that your mind will cure you. What I’m saying is that I’m not mentally battling things like I was before, acceptance has been a powerful healing tool, for both my mind and body.
Here are some of my swaps in recreation, fitness, work and life…
Teaching. I am unable to work in my chosen profession due to the my health and its unpredictability. I have become a writer, I am a mum to three amazing children, I have been a school governor and a volunteer and I work in the family business. There are plenty of ways to fill my days without over exerting my body or making me more fatigued but still keeping my mind active. Read more about my relationship with work.
Writing. CMT and EDS have left it virtually impossible for me to write more than few sentences so I type everything now. I use an iPad, it’s light, portable, and the keys are easy to press. I can’t feel the keys but I use my sight and manage OK. In fact I’ve got much faster. If I’ve had a particularly tricky dislocation in my hands or wrists then I dictate instead. This may be the way forward as things change. There are many different software to support this on the market now such as Talk Typer, Google Voice search, Microsoft Windows Speech Recognition, or the ever popular, Dragon.
Dancing. I loved to dance and it’s the one thing that I really miss that this has taken from me. You know when your tune comes on and you lose yourself in the moment. I’ve never really found a swap that’s worked for me here. It’s something that I just don’t do, not like I used to. I enjoy the music but it’s not the same as dancing the night away. Other people have managed to redirect themselves more successfully through singing or acting.
Drawing. I really enjoyed drawing, it was the one subject that kept me grounded through school. Now I dabble in computer graphics which allows me to be creative without dislocating something or putting too much strain on the small joints in my hands, other crafts such as pottery can be good swaps and be therapy at the same time.
Ice skating. Now I have only ever tried to ice skate once, I would have been in my teens and I distinctly remember not even being able to stand in the skates at all… even on dry land. However at Lapland UK out daughter wanted to ice skate with her brothers. Like me she wouldn’t have even made it to the ice so we popped her on a penguin (that the children hold on to for support while they are skating) and my husband pushed her, he danced with her and she was fully included with her brothers. Both of whom spent their time falling over even holding onto a penguin. But they all had fun and I was happy to watch.
Swegway. The boys are very keen to get a Swegway (self balancing board). We have resisted until now, they look like fun but I worry about them hurting themselves and it would be great if Rubie could join in the fun too and a swegway would definitely not be safe for her. Then I spotted this video. I think that my husband could turn this around in an hour.
Running. In fact even when I could run, and that was a long time ago, I was the slowest in the class and I hated it. Now I can’t because my right knee has severe osteoarthritis amongst other things. So I swim or exercise in the water, it’s much better for you, I try to walk my dog every day (even if I drive to the park and sit on a bench and throw a ball) and I have fallen in love with Pilates which has been my saviour.
Pilates. Pilates has truly saved my mobility and I wholeheartedly feel that I would be a full time wheelchair user had I not discovered this practise 10 years ago. Many of the exercises are adapted for me to take part in the class safely, I don’t kneel because of the previous surgeries and osteoarthritis so I do a different programme to the rest of the class. Often am in class healing from a recent dislocation and need to be careful in certain postures but I have an experienced and well qualified teacher that supports me through this.
To be honest, whatever position you are in with your mobility you can usually do something. Most exercises can be adapted to be done on a chair for example. My advice would be to find something that you enjoy and do it often.
Lifting a kettle. It became increasingly impossible for me to lift the kettle at home, the lift then twist would cause my wrists to dislocate so we installed a water heater. Piping hot water at the touch of a button. There are much cooler designs available now with boiling hot water plumbed straight in or if you are on a budget cradles that hold your kettle to allow you to pour without taking the weight through your wrist.
Preparing dinner. Due to the lack of feeling in my hands, (meaning knives are my enemy because I don’t feel cuts) and the fact that the small bones in my hands and my wrists partially dislocate daily, preparing food for the family is a chore and downright painful. So I’m training the kids to cook, not every day, but once a week as they are not really taught this as a life skill at school anymore. (In a year at secondary school my son has only cooked flapjacks, muffins and fruit salad, he wont survive on that). I also buy ready prepared vegetables, chopped for you and ready to go.
Climbing on the rocks. Climbing slippy rocks at the beach would be an accident waiting to happen but I very much enjoy sitting at the bottom on the beach, enjoying the view and taking photos of my gorgeous family.
Public transport. In my teens I fainted a couple of times on the tube in London, I distinctly remember regaining consciousness and the people on the tube carriage had moved as far away from me as possible and turned their backs, not one person helped. As the train pulled in at the next station, which was thankfully overground, I got myself off and sat in the fresh air until I was well enough to continue with the journey. These experiences have put me off travelling by public transport, particularly on my own. Soon after this I started to drive. I now drive everywhere, you’d be surprised just how accessible London is by car. No stuffy tube carriages. No more waiting at stations or bus stops. No standing. No more crowded spaces.