Humans of ME/CFS
What really makes my soul sing is dancing. If I can save enough energy to dance today, I will be as happy as it is possible for me to be (under the circumstances). Living with ME means constantly struggling to do your best with very little energy. Every morning when I wake up, I ask myself: what is today’s priority? What is the one thing that will make me happy, keep me smiling, and will not regret trying to do? Once a week that thing is a dance lesson. I rest all day before and the day after to gather the energy to survive the lesson. Plus, I have several mini breaks and nibble on high energy snacks during the lesson. Prioritizing tasks helps remind me what is really important to me. If I have an activity I really want to do, then it cancels out all other minor plans. In fact, I have to plan everything with military precision: timing of events, stocks of food at hand, and the all-important fall back plan for if I suddenly start to feel unwell. I love dancing, I love languages, and I love swimming. So, my week (hopefully) consists of a dance class, 2 Spanish classes, and 2 swims. I only have the energy to do ONE of these tasks each day. So, every day I wake up and ask myself what is the most important thing I want to do today. Today, it might be my rhumba class. So I will NOT put the washing machine on, clean the kitchen table, or iron a shirt. Today is dance day. ONLY dance day. I can make myself rest now by telling myself I can dance later. Tomorrow, I want to go to my Spanish class, which I try to do twice a week for an hour. I absolutely must organize a meal in advance, ready for me to eat on my return. I cannot pop into the shop for milk after class or I will have overdone it and be too shaky and dizzy to get out of bed for several days after and therefore miss the next Spanish class. If during class I start to feel tired and unwell, I have learned through painful experience not to be polite and hang until the very end. I speak up, say “I am sorry” and leave immediately. That way I have a chance of getting home to bed, resting, and being able to get up again later or the next day. Otherwise, I will get shaky legs, dizziness, nausea, and have to miss the next class. This week, I really want to go out to a family dinner with my brother and cousin. It is summer so there are no Spanish or dance classes this month. I ought to be able to enjoy a lunch out if I just stop myself from doing any household chores or going out at all the previous day. Spontaneity, where have you gone?
