Una's Blog

 

 

 

 

 

by Una Hearne.

We talk in terms of fighting illness/ obesity/ drugs/ redundancies etc. Fighting can be a brilliant frame of mind. I have a friend who had cancer and approached it as a battle. With military efficiency she fought, she won and we couldn’t be more pleased and proud of her.

However, fighting is not always the right frame. It depends on the situation and what works for you as a person.

For me, facing ME/CFS, I find the most useful frame of mind for me is the very opposite of fighting – Peace.

The best analogy for what it’s like to live with ME/CFS is to imagine your energy as a battery which re-charges with sleep. With ME/CFS your battery will only charge a certain amount – say 15-20% – no matter how much sleep you get. If you use even slightly too much energy you ‘crash’ and it can take days, weeks or months to recover back to your 15-20% level.

The only two things which have been shown consistently to help stabilising and recovery in ME/CFS are pacing and extreme rest. Pacing means taking a break between activities and staying within your energy limits. Extreme rest – imagine the opposite of extreme sports… There you go! To be properly at rest means to be in a peaceful state. No tension, anger, resentment, also no over-excitement or drama. The most useful piece of advice I received along the way was from a lovely lady who actually recovered from ME/CFS. She said ‘You can’t afford the luxury of negative thinking, you simply don’t have the energy’. That really resonated.

Peace, for me, comes from acceptance, allowing and looking for joy. It is not a one-time decision, it is a daily practice.

I accept I am ill. And I’m ok with that. I accept that I can no longer do most of the things I want. And I’m ok with that. I allow my feelings to be what they are. So even when I’m frustrated and can’t accept the situation, I accept this is how I feel right now. And I’m ok with that. I keep my mind open and look for joy every day (there’s plenty). I savour and enjoy the hell out of every little thing I can. And I’m ok with that too.

Unfortunately I have to add that the awful irony of this illness is we are forced to fight for the services we need – medical and welfare – and to spend energy trying to raise awareness. This uses huge wells of physical, emotional and mental energy we simply can’t spare. So to finish this blog, a huge shout out and big hugs thank you to all the activists and everyone doing their bit, to get us to the day we can get help we need without depleting what health we have.

Meanwhile from me, Ommmmmm….

 

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