Foggy is snoring softly next to me in Foggy HQ so I thought I’d make the most of the peace and quiet and write a blog about the choices M.E sufferers make to make the most of the little energy they have.
People living with M.E have limited energy; our energy can be represented by a non-rechargable battery. We only have a certain amount of energy each day and we have to make sure our battery doesn’t go flat before bedtime. This means we are very good at micro-managing our time and activities. We have to make choices. What is worth spending our valuable energy on?
I regularly have to make decisions like whether drying my hair or meeting a business friend for coffee is more important. Which activity holds the most value for me personally? In this scenario, meeting the business friend is more important, but is the interaction damaged by turning up with wet hair? With a new acquaintance it might be, but most of my business friends know about my M.E life and are understanding. Unless you have limited energy you will not understand how exhausting blow-drying long hair can be. I have thick hair that holds lots of water! It takes around 15 minutes to dry. That’s 15 minutes of holding both arms above my head shaking a hairdryer and pulling/twisting brushes. It’s exhausting! Fortunately for me, my hair ‘hangs’ well so I can just wash and go! It takes hours to dry naturally though so sometimes the need for a blow-dry is unavoidable.
I sometimes have to cancel plans with friends because I know I simply won’t have any energy left at the time I am due to meet them. It used to feel odd to me, cancelling BEFORE I felt too ill to go out. However, I’m now an old pro after having M.E for 11 years and prefer to not leave the inevitable cancellation until the last minute. It’s not fair on my fabulous and caring friends, I find that plenty of warning helps the situation be a bit more tolerable.
Anyone who hasn’t heard of the Spoon Theory – read this. The Spoon Theory This excellent way of describing how we manage our energy levels if we have a chronic illness has been adopted by millions of people worldwide. I personally don’t, but many call themselves ‘spoonies’. We lose energy every time we undertake an activity whether that is washing up, climbing stairs, getting out of bed, showering, cooking dinner, writing a blog…… All of these activities mount up and we find our battery is on the verge of being flat very quickly if we don’t learn to say no or make wise choices.
Saying no is blooming difficult, I am a people pleaser so will always push myself to do more than I should. I have learned over time to say no more, but I have met with resistance from some quarters. This resistance is understandable I suppose, these lucky people don’t have the energy of a washed out rag and remember, we don’t look sick. Rest assured though….we FEEL sick….very sick, every day. Understanding and consideration goes a long way if we have just cancelled our plans with you or can’t do a favour/job for you. It won’t have been a decision we have taken lightly. Unfortunately, we know our need to save energy is far, far greater than pleasing our friends and loved ones. Sorry!
Sally (and Foggy OBVIOUSLY)