One of the defining features of CFS/ME is something called post-exertional malaise. This is when you do an activity and then sometime later, often the next day, you feel the fatigue caused by that activity. It is extremely difficult to deal with. Not knowing if you have done too much until the next day is a difficult way to live. I’ve learnt to judge what is too much, but it is still a bit of guessing game because energy levels can vary from day to day.
I decided I have an ‘energy bank’. And in the bank there is ‘money’ (energy) and every time I do something it costs me money. Each day I get the same amount. So say I have 9 pounds in the bank one morning. It’s going to cost me 1 pound to have a shower. It’s going to cost me another pound to get dressed and another pound to have breakfast. I now have 6 pounds left. I will need 1 for lunch and 1 for dinner. So I’m left with 4 pounds. I want to take Walter for a walk, and this is really hard work for me and costs me 3 pounds. Now I have 1 pound left. I use it up in the evening playing the Sims.
The next day I have 9 pounds again. Again I need to shower, get dressed, eat breakfast and save 2 pounds for my other meals. I have 4 pounds left again. I need to do a load of washing and that costs me another pound. So I have 3 left, and after lunch I decide that I will go into town for a change. I know it will cost me all of my 3 pounds, but I don’t get out very often and I want to go. I have an uneventful and pleasant trip into town, but on the way back I notice I haven’t got much petrol left in the car, I really need to refill it even though it will cost me a pound (yes, I realise the irony). So I do that and I now know I will be overdrawn at the end of the day. When I get home I discover the washing machine has thrown a wobbly and stopped working mid cycle and little lights are flashing at me all over the place. Sorting it out and getting it working again costs me another pound. Then when I give the Walter his dinner, he gobbles it so fast he makes himself sick. I lose another pound cleaning it up. Then my husband phones to say he will be home late, and I’ll need to cook dinner. Cooking dinner costs me another pound. I go to bed 4 pounds overdrawn.
In the morning I get my 9 pounds again, but 4 of them have to pay off my overdraft, so I start the day with 5 pounds to spend. Showering, dressing, breakfast, lunch and dinner take all of those, leaving me with nothing. If I do nothing else today I will have 9 pounds again tomorrow. But if I do other things, I risk becoming more and more overdrawn.
I’m quite lucky, I usually have 9 pounds a day, spare a thought for those people who only have 1 or 2 pounds a day. I remember I used to only have 3 or 4 pounds a day and that was very hard, but luckily with time I’ve earned some interest.
There is a wonderful alternative explanation of this called ‘the spoon theory’ which I came across sometime after I came up with my ‘energy bank’. It’s a very good description of the same thing, but it is a little too simple for CFS/ME as it is based on Lupus.
The example I have given above is an extreme one. In reality my husband never phones me to say he won’t be home for ages and I’ll need to cook dinner, and I could have managed without getting the petrol. But I wanted to show what happens on those days where everything goes against you. It’s very difficult to deal with. Also, the reality isn’t quite this simple, some days I don’t have 9 pounds, I only have 7 or miraculously I’ll have 12. This will vary without rhyme or reason, but stress and illness definitely reduce the daily budget. And just to confuse things further you don’t actually know what your budget is on a given day, you have an idea, but you won’t find out until the next day whether you’ve overspent or not. Also you cannot save left over money from the previous day, if you don’t use it all, it just disappears.
Sometimes, I think: you know what? I don’t care! Today I’m going to do what I like and to hell with the consequences. And often I pay for it the next day, but it’s worth it. The best days are when you do this and wake up the next morning feeling ok, and you realise the budget for yesterday was higher than you thought and you haven’t overspent. You don’t have to spend today paying for the excess of yesterday. It’s just a shame it doesn’t happen very often.
‘Energy is the essence of life. Every day you decide how you're going to use it by knowing what you want and what it takes to reach that goal, and by maintaining focus.’ - Oprah Winfrey
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