May the Force be with you

To what extent do you plan how you are going to invest your energy on any given day? The vast majority of you don’t give it a second thought – at most you may be working out how to make the best use of the time you have. Considerations of how far you can push your physical body are rarely on the agenda. However, if you suffer with chronic fatigue for instance or long Covid or in my case, muscular dystrophy, the calculation is a very different one.

There are many different types of muscular dystrophy but in essence they share a common characteristic in that the components your body needs to build and re-build muscles don’t work properly. For some people the degeneration of their muscle function is a long, drawn-out affair whilst for others such as me the decline can be precipitous. Then there are those who are born with the condition and never have the chance to experience the joy and freedom of a properly functioning body: how casually I held the gift of a body that largely allowed me to do what I wanted, when I wanted for 60 years. Whatever sort of MD you suffer with, there is a very clear limit to how far you can push your body.

The first thing I weigh up on waking is how to invest the little energy I have for the coming day. This extends for instance to considerations of whether or not to wash my hair, which requires me to sit on a perch-stool in the shower as I can’t lift my hands to my head and instead need to put my head towards my knees and rest my elbows on my legs. That in turn means I need to expend energy to push to standing afterwards, which doesn’t come with guaranteed success. General showering can still be done standing up, which avoids the ‘perch-stool press’, although for how much longer I can’t be certain. Indeed a lot of 2022 was spent trying to get ahead of the game by installing aids to make the house as fully accessible as possible before I am totally confined to a wheelchair.

It extends too, to planning to rest up in the afternoon if I know I am going out in the evening or allow for a quieter day tomorrow if today is going to be busy. Indeed I realise that when I get up in the morning I immediately start to long for the moment I will be able to get back into bed again, even if the day ahead is filled with good things.

And the calculation of how much energy you can afford to invest changes by the day. At the start of 2022 I was able to walk up the slope to our driveway using a stick and I could still walk half-way up the lane towards the village church and back (a half-mile round trip) if I had someone’s arm to lean on. By June, after my fall, I could only walk up to the drive and back using a ‘walker’ and any thoughts of venturing off the estate were out of the question. Now I am no longer safe to walk up the slope at all and have to go up in my wheelchair.

All this begs the question ‘ How bad is my condition going to get?’ If we knew the answer to that then we could plan more intelligently and make memories while we still have the chance. In pursuit of the answer we agreed to have my full genome sequenced and for the results to be run against the complete bank of known gene mutations that cause muscular dystrophy (MD generally has an inherited genetic root).

The answer that came back put me into a flat spin. They, whoever ‘they’ are, could identify NO known genetic mutation in my DNA that is associated with muscular dystrophy. On the one hand it was comforting to know I wasn’t some form of standard mutant ninja turtle, but it left so many questions unanswered.

Am I patient zero of a brand new mutation not previously identified (maybe it will get named after me!)? Am I suffering from something completely different and the answer lies in a different department at the hospital? Am I suffering from some auto-immune response (you do hear of people’s bodies reacting in weird ways to non-specific viruses) or am I reacting to environmental factors that affect my body in this particular way? Could it be that I haven’t drunk enough good wine in my life or is it a result of having never seen Star Wars?

At present there is no obvious way of finding an answer although we are increasing our consumption of good wine, just in case. It would be nice though to have some idea of how much energy I have got left in the bank to invest (and with MD the small print warns that your investment will only go down and never go up). Maybe I should watch Star Wars after all as I could do with some force with me!