A Day A Week A Month Living with CFS ME

A Day A Week A Month

How to live so that CFS ME doesn’t suck the life out of the wife!!!

Started to write a post about a day in the life with someone who has CFS / ME because it’s such a confusing and fluctuating ordeal. Many ask me why he can’t do this, that or the other thing. Or how it is that he can one day, but not the next. This is so baffling I can easily say it’s worse than cancer, or losing a limb, or this or that… but you’ve all heard it before. What you don’t hear much about is how we keep up hope, love, and a glimmer of courage.  What I rarely do is cry for help — for most often I get advice but not help.

At first, I was angry and frustrated. How could this happen? What did I do so wrong that life became such hell?  I’m a nice person who usually goes out of her way to help friends and family. I’m a good woman. Why! Why! Why!  But that was so long ago. Now? I’m just grateful for the love we share. It’s not easy. It’s hell. It’s terrifying. But it is what it is and I decided long ago: I don’t run away from this just because it’s hard, I’m scared, and we aren’t finding a cure.  Leaving would be cruel and selfish. Living with someone who has cfs  me forces a patience usually reserved for the dying – but it’s less predictable. And there is no endpoint.
thornyloveSo we go day to day. People do. They get by. They find ways.

Not to whine — we kept trying to figure out a flexible career.  We found people loved our team approach and we loved the creative ways we could serve. Photography is a gift. Words flow. And Design? it’s what we did in the corporate realm so we offered the same approach to smaller ops.  It was our key selling point.   Together we made a good team. 

Until the illness took over and too often production halted while he dealt with the disease disturbance. It makes for a good story but only if there is a happy ending.

I became a certified health coach. I learned all I could about the latest nutrition facts and myths,new trends, new supplements, new superfoods. I became an expert in foods that heal.  I became the guide. And sadly, I almost stopped because this dang disease sucked the passion out of me. Getting someone from bedridden to out cycling some 150 miles a week and dumping 60 pounds was great. Watching this disease rob him of life a second time was hard. He’d gotten back on the horse a couple times, but ultimately, it never lasts.  Together, we know more about coping with CFS / ME than most of the self-proclaimed experts.

The only thing that lasts is love. I don’t mean crazy stupid love. I mean the nurturing and nourishing love that includes fights here or there, some yelling, some slamming of doors, but  love reigns stronger than the fear, worry and angst. Coffee and fresh air help too.

How we do it? We do it together. We do it one day at a time. We use what we’ve learned about love, about hope, about recovery, and about faith. We try. We are not perfect. I tell myself that he didn’t cause it, he can’t seem to control it, and the doctors sure can’t cure it. If they could, we’d do whatever we could to make it happen.

I learned long ago that love is not about expectations.  I have them. We all do. Love overrides the expectations and we suddenly see our expectations as premeditated resentments.

Leave a Reply