Anyone struggling with ME knows how difficult it is to assess what can and cannot be done in terms of activities. In my case, I am talking about simple things like washing myself, being creative for half an hour while sitting on my bed, ten minutes on the phone with my mother, watering the three plants in my room, drinking coffee in my room with my husband chatting with my daughter.
And no, that’s not the schedule for one day!
As such, I know roughly what my body can tolerate, but there is a kind of gray area where it is difficult to determine if and what is possible at a given time on a given day.
This is because of the following things, among others:
⁃ how I am doing emotionally and physically;
*what I did do the days before;
⁃ what is planned for the next few days (e.g. calling doctor, the domestic help coming, writing a piece for FB);
⁃ how quiet/silent it is in the house;
⁃ the weather;
⁃ how much noise is coming from outside;
⁃ …
All this affects what I can handle, so I will have to take that into account when doing or not doing things.
But even then, it is never entirely clear whether my body can tolerate a certain activity. What can go right without consequences one time can be too much and cause PEM another time.
This makes living with ME very difficult and, despite all the planning, unpredictable.
Every day remains a day of weighing and balancing, hoping and discarding, doing or not doing. And even then the outcome is uncertain.
Last Sunday I felt well and decided to go downstairs for a few hours to drink a glass of wine with Michiel on the couch by the fireplace. It had been a really long time since we managed to do this and then you notice how nice it is to be ‘just’ downstairs for a while. For Michiel too, these are moments with a golden edge.
The following Monday I was exhausted and a day later the consequences of this ‘outing’ are even more obvious: when sitting up straight my heart races, sounds are hard to bear and tinnitus sings a tone higher and louder.
When I think about it, it is quite confronting, because I used to do everything without thinking about it. Now my life consists mainly of planning and assessing whether something can or cannot be done, whether something is wise or not, whether something will have consequences or not.
Actually I am in a kind of straitjacket that determines day in and day out what is possible, but especially what is not.
That straitjacket is called ME and it is impossible to escape from it.
Marieke
The ME Global Chronicle 