When You're Stuck in the Middle of 'Sick' and 'Well'

Stuck in the middle of sick and well. That’s how I feel. Chronic illness is never easy, whether you are the person who’s sick, or the caretaker or family member of a person with a protracted illness.

Before I became ill, I was very busy multi-tasking, care-taking, mothering, wife-ing, and working. Then it all changed. My world completely stopped. I was diagnosed with a rare lung infection that led to many other illnesses, finally resulting in myalgic encephalomyelitis, otherwise known as chronic fatigue syndrome (ME/CFS). For the last three years, I have spent most of my days in my house, resting, chasing doctors and insurance companies, researching my diagnoses and…crashing.

Crashing is what I call not having the energy, stamina, motivation or wherewithal to do more than is necessary to take care of myself for that day. Until very recently, most of my days consisted of making myself get out of bed, get dressed, but not always showering (because that used every bit of energy I had) and forcing myself to eat three meals. My body was aching, spinning, dizzy, burning, exhausted, fatigued, overwhelmed, underwhelmed, out of sorts and… crashed.

But now I’m in a new place. My doctors impressed upon me the importance of pacing-budgeting my energy, so as not to use more energy than my body could produce. What I learned is that I have about a two-hour window when I can do errands. Anything more than that usually (but not always — another side of this chronic illness thing — unpredictability) results in what’s known as post-exertional malaise (PEM), which is just fancy language for, sometime within the next 12 to 48 hours, I’m going to crash. The crash could be mild, with just lower stamina and mild pain, to spending the next few days doing absolutely nothing, because my body is too weak, fatigued and aching to do anything but lay on the couch.

So, because I’ve learned to pace, and because I changed my diet, and because I followed my doctors’ orders, I am having some days where I feel almost “normal.” That’s a tricky place to be. That’s the in-between-sick-and-well place. This place is sunny with a chance of rain. I don’t know when the storm clouds brewing in the distance will appear, but I want to take advantage of the sunshine while it’s here. That’s when I can forget about pacing. That’s when I start to feel guilty for feeling better. That’s when I start to feel a little “crazy.” Am I sick? Am I well? Is this going to last more than today? Is this a remission? Ugggg! My head is spinning.  Oh wait, that makes me exhausted! I can’t overthink these kinds of things because it uses too much energy. Even emotional/mental energy can zap me. So I’m back to trying to stay in the middle of sick and well.

It’s like walking a tight rope across the Grand Canyon. It’s a very long, taut rope that stretches farther than the eye can see. If I don’t navigate it properly and keep my balance, I may fall into the deep canyon that is major relapse. I read stories all the time of people with my condition who warn about the perils of getting too cocky while walking that tight rope, only to find themselves at the bottom of a deep dark canyon, worse off than before. So that is always looming…

It’s a continuous balancing act between my old life, my current life and the life I hope to have. So, I’ve decided to do my best to balance on the tight rope, only not on the one stretched across the Grand Canyon. This one is several inches above ground and it only stretches a few feet in front of me. Because what I know for sure is that I don’t know what’s out there in the future. I can only take care of the day I’m in. I have to keep reminding myself — being in-between sick and well is better than just being sick. So, I’ll take my little victories of sunshine however they come, balance with my eyes open and my arms out stretched, ready for whatever is ahead, but holding onto the improvements of where I am today.