M.E. One Soldier’s Fight Back

They say that when trying to make changes in life, personal goals are a must. Those on a diet have a target weight, runners train for a target distance and I, along with 119 other members of the public, have a dance performance in 36 days time.

I have to ask myself why I volunteered for this. Over the last six months ago I have begun a very tentative return to work after six years with Chronic Fatigue Syndrome or M.E. One of the conditions’ central symptoms is overwhelming tiredness not relieved by sleep or rest. At it’s worst I had been spending days on end in bed. The shift from a healthy, active, working life to living with this major disability was a huge and painful adjustment, a year of gradually reducing and finally giving up work and responsibilities. By the time I had reduced my working and household activities to the absolute minimum I was far worse than I had been when I had first fallen ill.

In order to adapt to my symptoms I had first to accept them. There is no cure for CFS, some people recover fully, some partially and some never. In order to give my body the best chance of healing itself, I had to stop thinking in terms of ‘when I get better’ and live with the condition as an ongoing reality. So, as hard as falling ill was, recovery has been no easier. As I regained the ability to do a small amount of exercise such as a walk around the block, I veered erratically from sitting, bored and isolated wondering if I should be doing more to lying in bed feeling like I’d been climbing a hard day’s mountain and knowing I’d done too much.

Of course I know exactly what I need to do. I need to draw up an exercise routine with regular, short periods of activity throughout the day so that I can start to rebuild the muscle I have lost over years of inactivity. I need to gently but surely increase the amount of exercise I’m doing, always ready to pull back if my condition begins to deteriorate. The trouble is, I’m not very good at routine. I soon get restless and need change. It’s projects that focus my mind, not routines, hence the dance performance in 22 days time.

Before I fell ill I was working as a film-maker and I’m now returning to this work. Camera operation is too physical for me to take on professionally as yet but editing is great for engaging the mind and gives me something I can usefully do either as employment or for love, working free of charge on projects that I want to support. Despite these advantages, editing doesn’t offer much in the way of physical exercise, so I needed to take on some leisure time projects too, like a dance performance in 17 days time.

My first was scuba diving. Doing the weekly classroom and swimming pool sessions was a great learning experience and though exhausting, was manageable. Two days of open water drysuit diving was, by comparison, a huge strain on the system. You need to carry a lot of weight to keep a drysuit full of air underwater, and lugging that weight on land when you haven’t carried more than a plate of food for years was a real challenge. My back took weeks to recover and in retrospect, I should have asked the dive school to organise my training as they would do for a wheelchair reliant person. Hindsight, as ever, so very useful.

It seems like ages ago that I responded to a call out for volunteers ‘Aged 16 or over regardless of their background or abilities’ to appear in Rosie Kay’s ‘120 Soldiers’ at Birmingham Hippodrome and now the performance is just 12 days away. I have worked with Rosie before, my first substantial edit job was her short dance film ‘The Wild Party‘, and I also filmed a number of her early performances. It gave me a window into the fascinating world of dance that I had previously seen very little of. Collaborating with Rosie and seeing her projects growing in confidence, ambition and scale was a real privilege and this is an opportunity to reconnect with that world, but this time as a performer!

I had intended to write a weekly article about my preparation for the show but, my goodness; performance in eight days time…

Read my blog about the rehearsal here

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