Pacing – Not as easy as it sounds!!

“Just set yourself a steady pace, not too much, and listen to your body. It will tell you when to stop.”

That is so simple. My body will tell me when I need a break. That’s what my physiotherapist, psychologist, doctor and neurologist have told me.
I have lived over half my life with Multiple Sclerosis and when I am in a flare up, or as I am now is a steady decline, I have found pacing a herculean challenge. Once again I am trying to get back into a new rhythm as for the last 5 months I have been focusing on my physiotherapy for my disobedient right leg. It refuses to behave like my left leg, with the feeling of weights compressing my thigh.

This has made walking very difficult, but the MS Society office in Galway has an FES (Functional Electrical Stimulation) system which stimulates my leg, and I can walk normally, when wearing the device (See this YouTube video). The office is one and a half hours drive from home, and I attended two sessions per week. Travelling for three hours, twice per week, is exhausting on its own, and added to this an hour of therapy, I had little energy for anything else.

Pacing is the key. I stopped all other activity because I had no more energy. I had used my spoons. Since last week I have stopped going because of financial reasons, and I am now attending a half hour physiotherapy session once per week in Clifden. Much less energy being used, and so now I can get back to swimming again. Brilliant.

Swimming

It is a fantastic exercise, and I am varying what I do, and limit my time in the pool to 20 minutes. A combination of breast stroke, front crawl and walking. By mixing it up I don’t get bored, and I am getting back my general fitness. My plan is to swim four days a week, physio once a week, and two day’s rest. I also need to do strengthening exercises at home as my hip muscles are weak. (I wrote about the importance of exercise here).

The difficulty I have is controlling my enthusiasm. I want to do more, but if I do, my body collapses. The message of over doing it takes too long to get from an over-used muscle to my brain. I think the disease damaged the nerve pathways, and I need to ignore my body, and let my brain decide, based on experience.

This is really difficult.

My body is saying “Do more, you have loads of energy”, but my head should know better. The energy is not there, and it is a mirage of ability. Like a dream, if you try to touch it, it floats away, and you forget what the energy was like. I end up collapsing on the couch, legs up, with velcro and duct tape holding me down.

Getting fitter

What will happen? Over the next few months, as my fitness improves, the spoons of energy will grow. It won’t be a miniscule amount, like it is now. Nine spoons could become 15, and I will do much more. Swimming will help this, and I am also trying to see if I can get the FES device permanently at home. This will liberate me from the confines of the house. To walk in the fresh air will be such a treat. I miss the touch of the breeze on my face, and red cheeks from the exercise. I’ll feel almost normal. At least for a short while.

Pacing will always be important. If I overexert myself, the pain in my head will explode, and my spoons will empty. Setting a steady rhythm, within my ability, is vital.

I need to remember.