My little sister has ME/CFS, as does a friend of ours, Nim. Its sadly still a mysterious, debilitating condition that causes severe fatigue, 'brain fog' (inability to think and communicate clearly) pain and myriad other problems. Its like my sister has flu every day of her life.
Some days are good days - she can potter in the garden, or go with someone to the supermarket (never able to go alone). Some days walking from her bed to the bathroom, a matter of a few feet, takes herculean effort and leaves her shaking with fatigue and too ill to eat, read, watch tv or do anything but sleep a sleep that brings her no overall rest.
If she overspends her energy on a good day to do something like visit a friend or clean the house or take a carefully planned family trip to the beach (as long as she can sleep in the car and rest continually during the day) she invites a bad day the next. She calls it 'running out of spoons'. Google 'spoon theory' for a visceral illustration of what its truly like to have ME/CFS and similar life-stealing conditions. Healthy people have a large supply of daily spoons (energy) - so many we don't have to think about them for normal day to day life. Bev and Nim have a finite supply and they risk running out just by having a shower in the morning, walking downstairs and making a sandwich. Using energy to cook a healthy meal means they might not have the energy to eat it. They have to make choices constantly.
Borrowing an extra 'spoon' or four to do something Bev wants/needs to do means she will have less for the next day. She does that much too often, but its the only way she can have at least a glimse of a life that healthy people take for granted.
She would love to walk along the river, perhaps take a picnic, a small pleasure most of us wouldn't think twice about but is denied to Bev, Nim, and others like them.
Research is essential to find out why and how ME happens.......and what can help.
I am walking for Bev and Nim and all those affected by ME/CFS because they would love to be able to do so themselves, and moreso they all need something that is rarely given to ME sufferers - respect, support and understanding and the assurance that people are fighting for them.
I aim to do my walk on 6th May at the start of ME week.
Thanks for reading :-x
