ME/CFS & Fibromyalgia: Many Shades of Gray

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!  :)

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  1. Hi Sandy,

    You know what I think? I think you deserve a round of applause for your efforts at the gym. You know what else I think? I think the reason you have critics is because you have hit a nerve. You’ve triggered something in them that makes them feel threatened by you. They see that you have the fortitude to exercise (within your own limits) and that makes them look at themselves. Perhaps they feel guilty because they know they should (myself included) but for whatever reasons, don’t, can’t or won’t excercise. I think it’s a fear-based response that they are not even aware of. I wish I had your discipline. Well done, keep it up.

  2. You are a very strong woman. I admire you.

  3. Disability is never the same for any two people. It didn’t occur to me to bat an eye or raise an eyebrow reading your last post. I think it’s great that you do what you can and I also know that for every hour you spend working or going to the gym or whatever, there are far more hours spent paying for it after. And many hours spent saving up to have the energy to do other things.

    Don’t pay any attention to negative comments or emails. There are plenty of us who do understand all too well.

    take care!

    • Sherlock – Disability isn’t the same for any two people. I appreciate you always being a faithful FF reader and commenter. Thanks for always understanding and being here for me! I appreciate you!

  4. I’m a person with CFIDS/ME and I work out. I do it because if I don’t my body starts to ache from all the lying around I have to do, and I do it because I hope that if I make my body as strong as it can be then I’ll be better able to fight off anything else that comes my way. I know that I’m going to be out for at least a day after working out for an hour (in water) but it’s worth it to me because I think it helps me and my body cope with CFIDS/ME.

    • Hi Tammy, It’s nice to hear that someone else attempts to work out also with ME/CFS. I find that there are times when I have to get active to see if activity is going to make me feel better or worse. I agree that the exercise that I do, in my case it’s more strength training and resistance training, has helped improve my overall health. Best of luck to you on your exercise journey!

  5. Just found you – through I have to say that the nine months during which I was trying to find out what was wrong with me, and not exercising because I wasn’t sure if I would make it worse, were a HUGE downward spiral for me. It wasn’t until I started working out again that I crawled my way out – to a much less painful life. Granted, I was in pretty decent shape to being with, and exercise has always been part of my life, but honestly, my lower back and butt would just ache after spending so much time on the couch. Just walking in the park or taking a peaceful yoga or restorative yoga class really makes a difference. Hooray to you for sticking to this and making the effort. It is usually the last thing we want to do, but it is so important!

  6. I was told by my dr that is it imperative that I work out, even if its as simple as walking 10 min a day. And it is very very tiring, but honestly after the first month I noticed that I feel even worse if I don’t work out. So I do and I rest after and I believe that it helps. My hats off to you all – we all do the best to our abilities and keep this from kickin’ our butts.. well too much. or something like that!

  7. Melissa and Tina – Thanks for commenting! Congrats to both of you for maintaining an exercise regimen. We don’t have to workout like Olympians or do anything dramatic – just something very minor like you mentioned – a light walk, light yoga, can make all of the difference in the world.

  8. YEAH! YOU GO! and felt my muscles wither away after being sick for a few months, I noticed when I got dressed up and couldn’t stand in my heels b/c my thighs were shaking! Oh we can’t have that, now! I lost a lot of weight but it was all muscle. Even though I’m not good at being consistent about exercising,I know deep down that exercise is keyi n whatever form it can be done. Anyone I have met that has “sprialed up” has found some form of movement and stuck with it. Anything that gets your circulation going! Good for your mind, body and soul. It’s very motivating, which is something we can all use! It’s up to each of us individually to find our own level and be very aware of how we feel and not overdoin it, just like with everything else we do. Even if it’s just walking across the room! I’m the queen of lazy exercise!And do it consistently. I am happier when I remember to walk to the corner and back. Or in place. Or doing the bicyle while laying in bed. And stretching, that’s easy to do…we don’t have to be yogis just to stretch…I put a pillow under my tush and do that in bed, too! Laying down all the time feels good in the moment but actually causes more problems like muscle atrophy and muscle tension, so movement is important, just be gentle. And whatever you do, don’t forget to pat yourself on the back for doing it! Hey I walked in place for a minute today go me! If I keep it up maybe by next month I’ll be able to do a minute and 30 seconds! :)

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