Humans of ME/CFS
YES, I CAN!
It was almost eight years ago when the first signs of chronic fatigue syndrome (ME/CFS) peeped into my body and I guess they felt comfortable because ME/CFS has stayed for these eight years.
Why do I say, “Yes, I Can”? Because there are many activities I can still do, but I have to adjust my pace such as washing clothes. I can no longer do four loads of wash in one day. But, I can usually do one load and fold it. I can set twenty minutes of ironing out in my kitchen and iron on a good day.
I make a large pot of soup with organic vegetables and chicken, so I don’t have to worry about cooking when I don’t have energy. I do most of my clothes shopping through catalogues. I wait to buy until a catalogue has free shipping and often sales. I can even get my difficult-to-fit 8AAA shoe size!
I no longer drive, not because my doctor told me I shouldn’t. But with my level of fatigue, I don’t think I’m safe on the road for others or myself. I have a student driver whom I got through UW Madison student employment office. He helps me get my groceries and run other errands. I’ve had the same driver for two years. He also drops me off at my book club group, to visit friends or to take me to my grandchildren’s athletic activities. It costs me between $150 and $200 per month. I certainly couldn’t drive my own car for that price.
Eight years ago, I thought I would no longer have my family (eight or twelve depending on who is in town) over for dinner. I can no longer prepare a festive dinner in 2 – 3 days. I start 2 weeks in advance deciding on the menu, setting the table and so on. I always have something I can make the day before and my children and grandchildren help with the serving. Who says the dirty dishes have to be done the day of the party? I often wait for a day or two to do the dishes. After an effort such as this I feel a sense of accomplishment, which I think is extremely important for a person with CFS.
I went to Rockford, IL, to join my older brother for a brunch. Between my driver’s time and gas, it cost $93. For a three hour brunch with my brother whom I dearly love, it was well worth it! I was in bed for four days afterwards.
That is one thing I have learned having ME/CFS. Sometimes, I plan to do fun things that I know will land me in bed for some days after. But then I am in control. I’m saying to life, “Yes, I can!” The tradeoff is worth it. Finally, some might find it helpful to know that I am 83.