I had a really bad CFS spell yesterday and most of today and once again, all of the things I wanted to get done I had to let go and push off until my next day off, which is Friday. One of my major issues I have is that when I am flaring, I will lie on the couch or in bed and think about all of the things that I was planning to do or that I should be doing. It’s a total mind game I have with myself that I know only makes the stress worse and my illness worse, but I haven’t been able to let go of that control yet.
My husband will always tell me, “Don’t worry. We can do it tomorrow.” Or he will say, “Don’t sweat the small stuff. Tomorrow’s another day.” But I feel like I have already lost so many tomorrows. I keep waiting to feel better tomorrow – but tomorrow never comes. I’m 41 years old, I will be 42 in less than 6 months. I feel like my life is slipping away from me and it has been overrun by ME/CFS & Fibromyalgia. I want to do so many things, but I feel like my life is spent waiting. I’m always waiting to do the things that I want to do and the things that make me happy, but CFS & Fibromyalgia always get in the way.
I keep trying to find ways to make a life for myself as normal as possible but with a young son at home, there just isn’t any energy left for me to do anything really for me. The only thing I honestly can say that I have done for myself on a regular basis was getting the massages and going to the gym and I had to give up my massages due to my husband losing his job. I try to get to the gym twice a week if physically possible but since Christmas, I’ve been lucky to get there once a week. I enjoy spending time with my son and his activities – don’t get me wrong. But with these illnesses and the constant flares, post-exertional malaise, and pain, tomorrow never seems to come for me.
I know that even for healthy people they often feel like their life is slipping away from them. But healthy people have control over their situations where I don’t. I was always a big goal setter and that is just part of who I am. Setting goals, working to achieve goals, and always trying to get to the next level kept me going in life. I mentally still have a lot of that mindset and when I lose days, like the past two days, I can’t help but feel like a failure.
The “critics” we have to deal with in our lives would read a post like this and say, “Well, just get up and make it happen!” or “JUST DO IT!” I know a lot of people like that who are supposed to be motivators, life coaches and “successful” business people tell us that we need to take charge of our lives, reclaim our health and we can choose to live to the fullest. It’s not as if we have a choice. Yes, there are some things that we have control over and yes, there are some people who will use their illnesses as a crutch for everything in their lives. But most of us aren’t like that.
I dream of actually being able to work full-time again some day. I would love to be able to go in, work a full day’s work, and come home and be tired from working all day. Not be the sick exhausted I get from the CFS. To healthy people, that sounds crazy, I know. I have people telling me all of the time that I am “stupid” for trying to work when they assume that “I don’t have to”. People think that if you get disability you must be raking in the money. Believe me, the majority of us on disability would rather be working full-time than having SSDI because we don’t get near what we made when working.
I would love to be able to plan for tomorrow and know that I can accomplish what it is that I want to accomplish. I fear what if tomorrow never comes? Then what? Will I be 80 years old, looking back on my life and all I remember are these days of sickness? I don’t want that for myself or for my family. I keep trying to do everything in my power to make a better life, but CFS & Fibromyalgia always seem to win – no matter what I try.
I refuse to give up, but sometimes I feel like I keep losing battle, after battle after battle.