I hate to admit it, but I am human. This was brought home to me yesterday as I experienced a temporary meltdown.
I have been Superwoman for many years. I did it all. Managed a series of demanding consulting jobs over the last 25 years that frequently involved long days and lots of business travel. Helped Skip through 20+ years of progressive MS, figuring out new ways to deal with each new symptom that emerged, solving ever more significant problems. Became a full-time caregiver as her ability to handle the tasks of daily living fell away. I used to have a social and volunteer life as well. We used to entertain here and there, with Christmas Eve's special dinner of butterflied leg of lamb, scalloped potatoes and sauteed red cabbage my personal favorite (all of which I prepared). We were actively involved in the local Unitarian Universalist congregation for a while, I even served on the board for 3 years. We used to take vacations to distant places twice a year. And, I loved the planning of those vacations almost as much as taking them.
I was feeling pretty tapped out before Skip went into the hospital two weeks ago. The Superwoman cape was getting quite tattered, showing its age. The demands of caring for Skip have basically crowded out all the non-essential stuff and I've been feeling pretty careworn. The wound care, which involved daily visits from nurses, feelings of frustration and fear and additional effort, were piling on too much and I could feel the strain. With all this, though, Skip was at home and we had control over our daily lives and routines.
Now we're in a whole new world, where control is gone. I am no longer hands-on for Skip's care. Instead, I must stand by and watch as things are done for her. Sometimes I think a great job is being done; sometimes, not so much. And, other people can decide to send her off to the hospital at 2 in the morning when all she needs is some hydration (that's really what the problem was). How come I know that the special bed she's on can cause dehydration and the folks who are supposed to care for her in rehab don't so they don't take countermeasures such as daily hydration IVs?
Okay, so I'm not Superwoman. Never really was, of course, but I pulled off the impersonation for a very long time. Now that I'm human, I admit the frailty of humanness. But, can I learn to ask for the help we humans all need?
HOW HAVE WE FAILED MS AWARENESS?
22 hours ago