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.
Sandy – I’m so sorry you are having such a rough time. I, too, have had CFIDS for 20+ years. It does get old, doesn’t it.
I know for me there came a time that I had to stop working. It wasn’t fair to my employer (I could no longer give 110%) and it wasn’t fair to me because I just could not get better.
I hope that this flare eases up. Gentle hugs.
Sandy Robinson says
Thank you, Dominique. I have had to stop work many times over the past 20 years and the longest I didn’t work was about 5 years.
Andrea Borja says
I’m sorry to hear about you being a CFIDS. I know you might seem to think that you’ve somehow lost the you in your battle against CFS, but please don’t mourn for that person. The Sandy that you miss, is still inside you, you know. 🙁