There is no such thing as “waiting for the week-end” when you have a chronic illness

In talking with a friend who was planning some week-end activities, it suddenly occurred to me that I never planned something for the week-ends anymore. Nor for that matter did I plan anything, except for doctors’ appointments.

The more I thought about it, the more I realized that I plan my day only when it has arrived so I know what I have to work with that day. My days are either good days, that means I have a bit of time to do something before I must lie down, or bad days where I try to conserve what energy I can to just cope with the day. On that day you do not plan anything, but try to cope as best you can.

It is not only that you cannot plan because of the unpredictable nature of ME/CFS but it is stressful. If for some unforeseen reason you must commit to a certain date, which is especially true for celebrations, that becomes a double whammy of stress. Now you have to think about not only that day but how long it will be. Is there a place to rest or is the company such that it would be awkward to ask to lie down.

We are all aware of this of course but we do not normally dwell on why. We just adapt to our new way of life. I hadn’t realized that I do not plan to do something special on the week-end. I used to do that when I worked and was home for the week-end. At that time I could be relatively sure that I would be ready and able to do whatever it is I wanted to do. How I took that for granted. How lucky people are who still fall in that category and think nothing of making schedules for their week-ends, holidays and vacations. They do not even take their health into consideration at all!

Vacations cause an entirely different stress level. If you have a family and you don’t go along on the vacation, it might mean that you mess it up for the whole family. If they go without you, they will feel guilty. If you go with your family they will be pleased but now you are stressed. You try to participate so as not to spoil their fun and do more than your energy and health allows. You have the worry of wondering whether you are able to last the event. Even if you do, your chances of not having a crash afterwards are slim.

I thought I would write about it as I know I am not the only one who feels like that. I am finally at the stage myself where it does not stress me out as much for most events with my family. However, if it is an event that involves other people I am not so familiar with, by the time the day comes, I have imagined a million scenarios about what could go wrong. As I do not tell others outside our immediate circle of having ME/CFS, it means I have to find excuses to cover any short-comings I might face on that day. For instance, this week I had to do a TV interview which I had known about for about a week. It was set for 10:30 am. That meant that was all I did that day. Before the interview, to preserve my strength and after the interview to recoup. I managed not to crash for that one.

I am one of those people who, when a thought occurs in my head, it will go around and around until I write it down and see it in black and white.It helps to get rid of items that I merely have to acknowledge. Writing it down takes the place of having to tell somebody. That is why I also wrote my story, Between You and M.E. That one was a tough one as to relate it, it was necessary to go back in the past and relive it. It took time and the courage to deal with the history but it was a relief once I had written it down.

By looking over what I have written, I realized how much strength and determination we have developed to make up for what we have in short supply, our health.


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