I have had CFS for almost 20 years and I still cry whenever I can’t handle a bad flare. I get so frustrated and just want to have a normal life. I have been having trouble all week and I keep feeling worse as the week goes on. Sunday I was feeling really bad and then I worked Monday. I was in bed all day Tuesday and Wednesday and I had to work today. When I started walking around the store today I felt so miserable I couldn’t keep going. I had to go and sit down in an office for a while and just cry. I should have stayed home – I know. I didn’t feel that bad though until I started walking around – that is when it hit me severely.
When you have CFS you get really good at being your own cheerleader. While I’m sitting in the office crying, I’m giving myself a pep talk the entire time. I was saying to myself things like, “Your shift is only 4 hours. You can make it. You can do it. Just take it slow, don’t let anyone rush you and you will be okay. You will be okay.” But 4 hours with a CFS flare might as well be 30 hours because the symptoms are so severe all you want to do is collapse – and I literally felt like that is what my body was going to do.
I had my little pity party and my pep talk and I went back to work. I talked to my boss and explained that I need to cut my hours back to just one day for a while. I have been having so many flares lately that I just need some time to get well. Even though I am resting all of the time (except for the times when I’m at work), I’m not getting any better. Working 2 – 3 days a week, 8 – 12 hours, is too much for this CFS body I guess. Isn’t that sad? I CAN’T WORK IN ONE WEEK WHAT MOST PEOPLE WORK IN ONE DAY. At one time my shortest work day was 10 hours a day. That was a long time ago and another person. That was the old Sandy. The Sandy that was energetic, alive, vibrant, loved life and wanted to take on the world.
I had so many plans for my life, so many things I wanted to do…I miss that person. I want her back.