I knew the other day when I posted about my weight loss update and the fact that I “workout” and have “built muscle” that I would receive some backlash from people. I normally do whenever I talk about exercise and how I try to do so in spite of having ME/CFS & Fibromyalgia. I realize that by writing about my life with chronic illnesses, and how I try to cope with the effects of working very part-time, being a mother and wife and trying to still get as healthy as possible puts me out there for ridicule by others and I am willing to accept that if what I write helps someone else somehow.
When you put your life out there, like I do, you find that even the people who should understand (like those who are sick with the same illnesses as you) think the same of you as many of the non-believers of our illnesses and society in general. There are so many misconceptions surrounding ME/CFS & Fibromyalgia to even the ones that have the illnesses that I just want to scream sometimes. The emails I get after I write about going to the gym and “working out” are just so unfair to me because my version of “working out” is not what everyone else at the gym is doing, and it shouldn’t matter.
I would think that others with our illnesses would be happy or inspired to see that someone with all of these health problems is making an honest attempt, no matter how futile sometimes, to make a better life for herself, and instead all they see is that people will see that I exercise so therefore, I’m not really sick and everything I say is a lie. Do you know what I have actually been told in emails? That by discussing the fact that I attempt to exercise and attempt to work a few hours a week, I am making it harder for others with these illnesses to be taken seriously and to get disability. Can you believe that? That is just absurd.
ME/CFS & Fibromyalgia are not black and white diseases; there are many shades of gray. Where one person may be completely bedridden, another person may be able work full-time; another may be able to work only part-time; another may be able to do restricted activities that don’t involve stress, etc. Each person’s illness is different. It’s the same with disability. People assume that if they would see someone with our illnesses working a few hours a week, out mowing the grass, or walking slowly on a treadmill for 15 minutes that we can work for 40 hours a week and that we should not receive disability.
Disability is meant for those who can’t gain “substantial employment”. There is no way I could work a full week and I can’t help support my family on the 8 – 12 hours a week I work at the store. My bosses can all tell you that I am a huge pain with my schedule because I have to have all of these restrictions in place: I can’t work three days in a row because it causes a flare, I can’t work more than 4 or 4.5 hours because it causes a flare; I can’t work more than 8 – 12 hours a week because it causes a flare.
On the days that I work, I can’t do anything else – there are no workouts, no nothing. I come home and I crash because the hours I work take everything out of me. This week my big gym workouts consisted of one day at the gym. But even that little bit has helped improve my strength and flexibility and that helps with the Fibromyalgia. I came home today from work, threw a pizza in the oven, ate a salad, waited for the pizza to finish baking and laid down. I got home from work at 3 p.m. I laid down about 4 p.m. I didn’t get up until 7:30 p.m. and then I had to force myself because I needed to eat something. I only worked 4.5 hours today but my body feels like I worked a 10 hour shift. It’s hard. But it’s harder for me to be here all of the time, lying on the couch, waiting for the time to pass, because every day is not a bad ME/CFS or Fibromyalgia day. I never feel good, I just feel better some days than others.
Monday I’m off to the doctor’s office to discuss going off of pain medications if possible and to see what other options are available – therapy, etc. I want to do this stuff for me, for my family, for my life. Would it be easier with all of my problems just to quit everything? Yes, it would. But that’s not me and that’s not the example I want to set for my son. I want him to see that you don’t give up when the going gets tough. There’s nothing wrong with that. I’m proud of the fact that I have tried to make a better life for myself and I won’t stop talking about it!