LEMON-AIDE

   This is Invisible Illness Awareness Week, a time to spread understanding of the many serious illnesses that often don’t show on the outside, in spite of causing great pain, exhaustion and lack of function within the sufferer.  You can visit the Invisible Illness Awareness Week web-site for information, support, resources and a chance to add your voice to the many that are blogging and sharing about their own experiences living with invisible chronic illness.

I thought I’d help spread awareness by sharing an experience I had many years ago, soon after I became ill.  My illness has progressed over the years and I need to use a cane or walker now. This has made my illness more visible which helps people see that I am challenged physically. With visible illness comes greater understanding…many people hold doors open and are patient when I take longer at a register or am walking slowly in front of them.  Invisible illness is a whole different experience…

I remember going to the grocery store many years ago.  I showered and dried my hair, an exhausting task on my best of days requiring a rest and recuperation period afterwards.

That afternoon, after resting, gathering my purse, looking for my keys, then filling up my water bottle (a constant companion since becoming ill) I drove to the store and sat in the parking lot awhile to gather energy. I remember already feeling anxious anticipating standing in line at the register.  Standing up in one place for too long causes my head to seek the ground in order to keep blood flowing to my brain. Orthostatic Intolerance often accompanies systemic illnesses such as ME/CFS, FMS.  It causes the body to struggle to maintain blood pressure. This means blood pressure can drop suddenly, which can cause fainting or in my case near fainting. If I don’t sit or lie down at the onset of symptoms, my body does it for me; fortunately I don’t lose consciousness as some people do.

As I slowly walked the store aisles, collecting the items on my list, I heard someone call my name. I looked over my shoulder and saw a woman from the playgroup I helped start (before I became ill). For the past year my three kiddos and I had not able to participate due to my illness. “You look great” she said, “I’m glad you are feeling better”.

I don’t remember how I responded, I imagine I was tongue tied, as I often was when I saw a well meaning friend or acquaintance who hadn’t seen me for awhile and assumed I was doing well because I was out of the house. Perhaps I gave a nod and said “good to see you too”. I never knew what to say. “Well actually, I feel awful and am having a hard time standing up, but good seeing you”–is not socially or culturally acceptable, and a bit too personal to tell someone I am not close to.  I know I would have had to keep the conversation short, again, to avoid standing in one place too long.

When I reached the registers, the lines were indeed long. I leaned my torso over the cart handle and held my upper abdominal muscles in tight–a trick to help blood pressure stay up. I nervously remembered previous times when the light headedness, exhaustion, and wobbly legs of OT set in before I’d paid for the groceries. I’d had to dessert my cart or sit down on the spot…both were quite embarrassing!

When my groceries were paid for, bagged and in the cart and I was wheeling it towards my car, I felt great relief and gratitude at remaining vertical. As I lifted the groceries into the backseat, my legs felt like jello and I was severely thirsty and craving salt. I knew I needed to drink from my water bottle, and lay back in the driver’s seat for a rest before driving home.

First though, I needed to move the cart out of the parking spot next to me.  Self-consciously I pushed it into a space near the front of my car, between the noses of other cars. I knew I did not have the stamina to walk it to the cart “garage” and then make it back to the car. As incandescently as I could, I left the cart, slipped into the drivers seat and closed the door.

“Honk! Honk! Honk!”, I heard behind me. I sat up and turned my head. A grey haired women with steam shooting out of her ears, was shaking her head at me and pointing violently at the cart. I slid down in my seat hoping for a moment to become as invisible as my illness.

Many years have past since then, but I remember how my stomach had that tight churning feeling as I drove home. I hated being thought to be a “slacker”. Intellectually I knew the lady had no idea that I couldn’t physically put the cart away.  Still her response emotionally bothered me.  I wanted to have a t-shirt and a bumper sticker printed that read ” May appear more physically capable than she is…”