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Fatigue management... so tired!!!

Open Door - May 2004 pages 8-9

Jacqueline Toff

Like many people who have MS, one of my most disabling symptoms is fatigue - life-sapping exhaustion making me feel as though a plug has been pulled allowing all my energy to drain out. Over the years I have found it can be "managed" to a certain extent though not eliminated. Some years ago I went on a Fatigue Management Programme at the National Hospital for Neurology and Neurosurgery, which I found extremely useful.

One of the first things I was given was a Life Style Analysis form with headings

  • What do you want to be able to do?
  • Jobs that must be done
  • Jobs that could be handed over
  • Jobs that could be eliminated
  • This made me stop and think.

Then I discussed my daily activities with the occupational therapist. It was very useful to have an outside, dispassionate opinion on the manner in which I was doing everything. Very simple solutions were suggested which I had not thought of for myself. For example, I attend painting classes and I found that by the time I had driven home, taken all my gear indoors and got something to eat, I was completely exhausted. It was gently pointed out that it would be more sensible to drive home, leave everything in the car, go inside and sit down with my feet up for 15 to 20 minutes - and then bring things out of the car. Why couldn't I have seen that for myself? It needed someone outside to look at the situation. It worked well.

There were many other instances - very small changes, which, for me, made the difference between being able to do what I wanted and giving up on things. It taught me to look more keenly at my life-style and "think laterally". Of course I would prefer to steam ahead and get everything done at once but by stopping and taking a rest - before I get exhausted - I can actually do more.

This was one of the main lessons the Programme taught me. I also became better at asking for help from other people. Taking frequent rests is one of the principles of fatigue management and another is forward planning - spreading tiring and lighter tasks through the day - or even the week or planning journeys carefully with frequent stops. Other factors in fatigue management are following a healthy lifestyle and keeping as fit as possible.

All common sense really but sometimes hard to see for oneself. Some people find a rest while they read or listen to music is helpful, though I find that does not work for me. I need to close down the whole operation, shut my eyes, feet up, sleep if possible.

I have managed to incorporate a lot of the ideas from the Programme into my daily life. When I am cooking, I will do a bit, perhaps leave something simmering and sit down for ten minutes. Before I serve the meal I sit down again if I can, rather than be too tired to eat it and I may ask someone else to serve it! If I want to go out in the evening, I try to do it when I can rest during the day. Even getting dressed can be geared to the least possible effort. I get all my clothes together and then do as much as I can sitting down. In the kitchen I use a trolley to take everything I need from one area and take it to where I will prepare it.

The Programme had a lot to say about organising each work area, whether at home or in the workplace so that you expend the minimum amount of energy fetching things, stretching or walking from place to place. Using small carousels is helpful, on the desk or in the kitchen - they minimise scrabbling around trying to find things.

Fatigue can be a major disabling factor in MS. It is useless to pretend it isn't there or that one can rush around for a full day as perhaps one did before MS intervened. However, a lot can be done to minimise its impact. One has to get to know one's fatigue patterns and, as far as possible, what causes it - but also to realise it can sometimes occur for no apparent reason.

As with any management process, forward planning is necessary as is knowledge of the tools and "person power" available. If a report must be written in the office or grandchildren are coming to visit at home, that may be all that can be done for one day. The limitations have to be acknowledged and tomorrow is another day.

Of course the fatigue cannot be "cured" and there will be times when it overwhelms you in spite of forward planning, taking frequent rests etc. It's infuriating and if you had the energy you'd kick the cat - or the armchair. You do not want to ask for help; you want to be totally independent. Whilst managing fatigue is possible much of the time, sometimes it needs the support and understanding of work colleagues, family and friends.

Sometimes too, we need to have a break from being sensible, from forward planning. We want to be spontaneous occasionally, have a really late night, to party or to fly to Paris on the spur of the moment - everything has its price!

Even the National Hospital's Programme says, "moderation is the key to leading a full and happy life but occasionally extremes give spice!"

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