The Difficulty of Living With a Fluctuating Condition

I don’t know about the rest of you, but there is such a difference between my good and bad days.

Yes, I pace which is the number one advice for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I pace till I’m blue in the face (not literally blue, you understand). People pace differently, but it involves alternating rest and activity at a level which is “manageable” for you. For me, it involves doing exactly the same thing every day. Day in, day out. If it’s 11 a.m., you’ll find me in the shower. 6:40 p.m.? That’s my 13-minute (to be exact) reading slot. This was what I was taught. Find your baseline of activity and do it every day no matter how you’re feeling.

Pacing is supposed to stabilize you. Well, it has to a certain extent. I no longer have absolutely abysmal days when I can’t, for example, carry my plate to the kitchen after eating or when I can’t send a few text messages. And I would never not live without pacing. On the whole, it has made my symptoms bearable and allowed me to increase my activities a tiny bit each year.

Yet, I still feel like I’m riding a rollercoaster. I will have a few days or even a couple of weeks when I don’t feel too bad (as long as I follow my pacing regime, any slight variation and I get cream crackered). I get happy. It feels like a miracle. Can this actually be happening? I’m able to feel well enough to enjoy the small things I do? Might life actually get a bit better for me? Sometime, my daily routine even feels too little. Good days raise your expectations. You start to hope, make plans to see friends. But making plans when you have ME/CFS is pretty difficult. Basically you have no idea how you will be one from day to the next, from one hour to the next even. Because sooner or later, bam. The fatigue hits. Then I struggle to do even my basic routine. I try to work out why I’m feeling so awful. Did I overdo it? Do I have a bug? And the dreaded question of all, have I relapsed?

And I don’t know about the rest of you, but I seem to feel responsible for my bad days. I start to feel l like a failure – I’ve never worked so hard at anything (11 years and counting to be exact) and not achieved my goal. But here’s the thing. Pacing may help manage the illness to a certain extent. Other things may help a little too – meditation, supplements, etc. The truth is, however, that there is no treatment and no cure for my condition. There will be good days and there will be bad days. That’s the nature of the illness no matter what you do (or don’t do). There’s no point trying to reason with it because there is no rhyme or reason.

So here is your reminder (which I need as much as the rest of you). You are not to blame for your illness. You are not in control of it. And on bad days, when you don’t believe it’s possible for you feel any better, try and remember that you do have good days. You will get some respite and you will smile again.

One of my good friend’s favorite phrases is “You can’t control the waves but you can learn how to surf them.” And I try to remember this when I can. Although, for me, it’s less surfing, more hanging on for dear life to a bodyboard.

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Thinkstock photo by bernardbodo