The Invisible Illness

Sorry I haven't posted in so long. We spent most of last week in my hometown, Rochester, NY, visiting family for the Thanksgiving holiday weekend. As you can imagine, it was exhausting, but I did enjoy seeing everyone. It took us 11 hours on the road to get there Wednesday (with a stop at the Lyme doctor who is sort of but not exactly on the way), then there was a BIG family gathering each day with a different branch of the family. Then, an 8-hour drive home on Sunday (most restful part of the weekend!)

Anyway, I managed OK while we were gone by resting a lot at my dad's, but I am still not doing well overall. I've been struggling with yeast overgrowth for months now. I think I am finally getting it under control (I promise a post on all the remedies I've tried when I am feeling better), but this week I have still been feeling pretty horrible, especially in the second half of each day, with sore throat and severe flu-like aches. Each afternoon and evening has been a major struggle for me, both physically and emotionally.

A couple of times this week, I have been reminded of why ME/CFS is called an Invisible Illness.

The first time was on the phone with a family member who'd been in Rochester with us. She remarked on how great my son had seemed, so full of energy that he must be doing much better. In fact, as most of you know, my son has been much worse the past six months (and this relative knows that), and I explained that on the day in question, he'd spent all morning and afternoon in bed because he felt so terrible after playing with his little cousins the night before. He was in such bad shape that morning, he was lying on the floor, until he decided to just go back to bed. But, by late afternoon, he had rested enough to be able to play football and laugh with another set of cousins...and THAT is what everyone saw. Invisible.

This week, even though I was feeling awful and knew I shouldn't, I went to my neighborhood book group Wednesday evening. I'd tried to rest as much as possible all day, but I was still not in good shape. I figured I could manage just sitting on someone's sofa for a couple of hours and talking, but I was wrong. The aches quickly deepened, my orthostatic intolerance flared up, and brain fog began to set in. After an hour, I was feeling horrible. I tried pulling my feet up on the couch and sitting cross-legged (for OI) which helped temporarily, but my symptoms continued to worsen. I was slumped way down, with my head against the back of the sofa, and began to have trouble concentrating and speaking. When I went to the bathroom, I had trouble walking normally and had to shuffle along slowly.

So, of course, I figured it must be obvious to all my friends and neighbors around me. Nope. When I mumbled that I needed to go because I was having a bad day, a close neighbor/friend who has health problems of her own was surprised: "Really?" she asked. By this point, I was ready to curl up on the ground and burst into tears, and I was stunned to realize that no one could tell. How is that even possible? Invisible.

My husband often says that no one outside of our household can possibly understand or even imagine the bizarre life that we live. People only see us when we are well enough to be out; no one but our immediate families are there to witness the days or weeks spent lying prone. It's been months since I've been well enough to manage the grocery store - my husband had to go again tonight to restock. It makes me feel lonely to realize what an isolated world we sometimes live in, that even among close friends and family members, our suffering - even when severe - is often invisible.