I’m Sarah. I’m 39 and I live in Adelaide with my husband and two children.
I was diagnosed with mitochondrial myopathy a little over 10 years ago. Since then I’ve had times when it was hard to walk 100 metres and times when I’ve been able to swim 400 metres. I’ve had times of frustration and grief and times of acceptance and happiness. I’ve worked out lots of ways to live in my low energy body and still do the things that need to get done for my 2 children and do some of the things I like doing.
DIAGNOSIS
After a few years of declining energy, constant pain in my legs, poor balance and depression it was a great relief to be diagnosed with something that had a name. I wasn’t just unfit or crazy, the faulty gene had been identified. I have mitochondrial myopathy.
I kept running out of energy because I wasn’t making enough. The pain in my legs was a build up of lactic acid, the poor balance was a neurological problem. The depression and anxiety was partly caused by my trying to keep up with everyone else and failing.
FRUSTRATION
Even with a concrete diagnosis, life with a mitochondrial disease is frustrating.
There are a lot of things I’d love to do but can’t. I don’t climb ladders, I always hold the railing when I’m going down stairs, I fall over doing pilates and don’t ask me to stand on a chair and change a light globe. I wish I could do the things I want in my garden without waiting for someone else to do them. When I have a cold it goes on and on for weeks.
Probably the most frustrating thing for me is that I look well. My disease is invisible.
Each day there are the questions; how much can I take on today? Is this event or activity or task going to use up all my energy? Will there be some left to do something else? I’m going to be really tired after doing this thing I really want to do: is it worth it?
And the hardest one of all – should I take on this job, relationship, whatever, knowing that I might get too tired and have to stop and be disappointed or disappoint others?
These questions don’t have ready answers. Too often the answer is: I’d like to do that but I probably shouldn’t. It’s sad and I often feel my limitations oppressing me.
GETTING BANG FOR MY ENERGY BUCK
Since my energy is a finite resource each day I’m always looking for ways to get the most bang for my energy buck, the most value for energy spent. I’ll give you a couple of examples…
I love doing craft and creating things. I tried pottery once but I just wasn’t strong enough to shape the clay spinning around on the wheel. Sketching or painting involved too much standing around. Sanding and painting furniture – much too exhausting!
Knitting and crocheting I can do sitting on the couch. I love doing them and I’ve been able to make clothes and blankets and all sorts of things sitting pretty much still. I can recommend it to anyone with low energy. I can express my creative and artistic nature without getting too tired.
I love gardening and growing vegetables. To get the most vegetables with the least amount of effort I grow vegies in raised beds so I don’t have to crouch or bend and I grow things like zucchini, tomatoes and pumpkins which give lots of fruit from one plant.
I like to eat things that have the most nutritional bang for my energy buck!I don’t want to waste precious energy digesting something that doesn’t have any nutritional value. I use my bread machine to make my own bread with organic wholemeal flour for instance. Keep sugar to a minimum, keep processed food to a minimum and so on. When I cook I make double and freeze some for the days when I’m too tired to cook.
I need to watch what I eat carefully. If I put on weight I can’t hit the gym or go jogging to work it off.
ACCEPTANCE
In spite of the limitations I can embrace my illness and see the good things it brings me. The difficulties of life can be seen as challenges that make us into better people.
I have luxuries that others long for. One of them is mindfulness. Because I don’t have the energy to multi-task I do one thing at a time and I can focus on doing just that one thing, relax and concentrate. Because I have a much more active mind than body I can think through things and give my thoughts time to bubble.
Another luxury is time. Because I can’t fill my day with activities I get time to rest. Time to sit in my garden and watch the insects and birds. Time to lie in bed with the curtains open and watch the sky and clouds. I have time to knit and read and read to my children. I have time to pray and meditate.
Forced rest makes you appreciate the small things in life that busy people might not notice. Such as: there is a new bird visiting my garden that I haven’t seen before. Also my pear tree has just blossomed and each day the tiny pears get a little bigger. I have time to watch these things.
I HAVE FEARS AND HOPE FOR THE FUTURE
I wonder what the future will bring for my health and the health of my children. I wonder how to explain to them that one day they’ll be like me. On the other hand, in future when they start getting symptoms we’ll know how to help them.
I feel hopeful for myself and my children. Treatment has helped. I’m much better than I was 10 years ago and with research into better treatments maybe I can improve some more and there will be greater hope for my children and others with the disease.