One of the most debilitating symptoms I experience on a daily basis is fatigue. It’s difficult for anyone who hasn’t experienced this type of fatigue to understand what it feels like. It isn’t like the feeling of just needing more sleep; it’s complete physical and mental exhaustion. The only other time in my life that I have experienced this type of fatigue was after giving birth following a 21 hour labour. There are times when I feel like I am walking through treacle and struggle to support my own head; making decisions become impossible. I do my best not to get in this state by pacing my activity as best I can.
Christine Miserandino has lupus and experiences chronic fatigue. She came up with a brilliant analogy called Spoon Theory to enable her friend to understand what her life with fatigue was like. Christine used a set of 12 spoons to represent the amount of energy she had to ‘spend’ on daily activities. She then assigned her daily activities a number of spoons e.g. getting dressed – 1 spoon, taking a shower -2 spoons and so on. Christine then explained that if she ran out of spoons she could either not do anything else that day or occasionally she could ‘borrow’ spoons from the next day. Either way the average of 12 spoons a day remained the same. During bad periods this average could be lower.
Currently I am in a bad period and running on 8 spoons. My spoon expenditure is as follows:
- Getting up and dressed 1 spoon
- Getting up, dressed and showered 3 spoons
- Making breakfast/lunch 1 spoon
- Taking care of the cats. 2 spoons
- Going on a short 15 minute walk 3 spoons
- Doing physiotherapy 3 spoons
- Practising the piano 2 spoons
- Looking after family. 4 spoons
- Making phone calls/appointments 1 spoon
- Going to local shop 2 spoons
- Going out and being social. 4 spoons
Ideally I’d like to be able to do my walk, physiotherapy and piano practice everyday but at the moment that would be all I’d be able to do before crashing. I constantly have to make trade offs e.g on days I shower I don’t do my walk and I make sure I don’t have family duties. I don’t like letting people down so I always drop the activities that only I benefit from e.g. my piano practice and physiotherapy first before anything else. I struggle with being a burden on others and try to do my best to minimise this. There are times when I have to hold my hands up and say I can’t do anything right now because I’ve reached the stage I described at the beginning of this post.
Ironically one way to increase my spoon allowance quickly is to incorporate more exercise into my day. If I were to do my walk and physiotherapy every day without fail I would probably be running at 10-12 spoons at the end of the third or fourth week. In order to do this I’d have to be utterly selfish and not do anything else at all. Instead I am doing the best I can and hoping this bad period will be over soon.
I don’t mean to sound self pitying in this post. I’ve lived with this condition for 15 years now and it’s just the way my life is. I have lots to be thankful for not least a loving and supportive family and most of the time I am happy with my lot.