“How do you feel about everything that is happening?” my therapist asked me, last visit.
“Good,” I responded, without hesitation. “I feel as if I’m breaking down barriers: embracing life and possibility, despite my illness.”
Yesterday, I promised to rest, but there were boxes in the way, and nowhere to sit, so I unpacked one, then decided to clean the bathroom, and then my sister called to say they were dropping by, so I unpacked another and stacked the rest out of the way to make room to sit. Then I tackled the outside, tidying up as best I could and dragging out the lawn furniture.
“Illness doesn’t go away,” she reminded me gently; “but you are choosing not to let it define you. Do you think you’ll be able to handle it?”
“I am looking forward to the autonomy – not having to depend on help all the time.”
I ignored dizziness, racing heart, a mounting headache, and pushed on. This venture is about independence, after all, I told myself. I need to be able to do it all.
“It will not be without challenges,” she added. “You will need to establish a new rhythm, not just for yourself but for your marriage.”
Later, when Ric asked if I wanted to go for ice cream, I ignored the mounting fatigue and said yes. The need to celebrate our transition outweighed physical health.
“Yes,” I agreed, “and my experience of life is that nothing changes unless you are willing to shake it up. I feel like we are grabbing hold of the helm and charting new waters. It will be good for us.”
This morning, the fight is gone out of me. It is nearing noon, and still my body clings to sleep. I managed to stumble to the counter and make a tea, but am back in bed. That short journey caused me to sweat.
She hadn’t said it, but I saw it in her eyes as we bade our farewells: “Take care of yourself. Enjoy the adventure, but remember to do so with a modicum of restraint; ME/CFS is a real disease, and like many issues that plague us, will not be outrun.”
(Image is another from Ric’s collection of sunset shots: Lake Huron, Ontario)
We’ve traded it all for fresh air, early morning bird calls, and ever-changing scenery.
“Been here since the park first opened,” he beams and then proceeds to point to each of the other trailers and run down who’s who: “The ones behind you like to party,” he warns, “as does the couple just over there. These people have two little granddaughters, that’s a woman by herself, the next one just lost her husband last year, this one over here had a boyfriend but they broke up, Dean across the way helps out around here like me…” and so on.
Like turtles, we carry our home with us, and while we may move a little slower than everyone else, we are not catering to anyone’s schedule but our own, so it doesn’t matter. Only two days into our trip we found a lovely spot at a small RV park in Asheville, North Carolina along the French Broad River and ended up staying three nights. When things got too hot in Sarasota, where we were packed in like sardines on steaming concrete, we pulled out a day early and headed elsewhere. The flexibility of this lifestyle is freeing.
What I wish I had done was to pack better snacks – maybe pre-made sandwiches. The U.S. has wonderful rest stops along the way, but these do not include food courts like the road side service centers in Canada. Vending food is all that is offered, and since I already had lots of junk food on board, that was not helpful. I will plan better next time – eating is an important part of my health regime, and by the time we reached our first destination, I was feeling really sluggish, with a complaining gut.
One day and forty-five minutes late, we are off on our new adventure. It is still dark outside and the temperature is minus seven Celcius. This is the first time I’ve been in the passengers seat and I am high up.
