Carole’s Daily Life

Assistive devices

All of my challenges impact my life big-time. For years, I used a wheelchair outside the home for energy conservation. Now, I use an electric scooter; we have a lift on our van, so I can drive it on and off. I also use the scooter for sitting at meetings as it's more comfortable than most chairs.

2024 has been a horrendous year. I’m struggling with increasing fatigability. I’ve begun having extreme weakness from an unknown source on many days. My doctor is working on finding the cause. On many days, I now use my walker inside our house. I also use a cane for balance outside, so my disabilities are no longer invisible!

Wheelchairs can be humorous. We used to go on hikes, Joe pushing the chair as far as possible, then leaving it by the trail while I walked a short distance. I'm sure that raised some eyebrows!!!

Daily challenges

Energy conservation forms the basis for decisions. As one doc put it, "You have a limited amount of strength; you can use it all at one time and be wasted the rest of the day, or you can alternate activity with rest and keep going all day." I choose the latter.

Fatigability is my biggest challenge. Neurologically weak muscles fatigue faster than normal muscles. Resting the muscles is the only way to recover. Untreated fatigue causes damage that can take hours to weeks to overcome.

My responsibilities include light housework, some meals, laundry (with help), and financial records. Since I can no longer do any heavy housework and we cannot afford a housekeeper, Joe gets stuck with most of the work. Family and friends help some. Meals I mostly manage, but again too many times Joe cooks. Laundry I usually do because it can be arranged around my fatigue. Financial work I do.

An ordinary day: wake up, be up about a half-hour, rest one hour, be active one to two hours, rest again an hour or more, etc., etc. Resting means sitting in my recliner where I read, study, plan, watch TV, talk, etc. I've become a master at adapting tasks to diminish fatigue. When I'm up, I rotate activities to use differing muscle groups to minimize fatigue.

Challenges to meet

Some dilemmas arise. What happens when it's time to make dinner and I'm fatigued and desperately need rest? Or I need to leave for an appointment? Maybe I want to go to a friend's? Or do the fun thing I had planned? Choices have to be made. Do I go ahead and do it and risk the damage from over-fatigued muscles? Should I cancel? Do I call on someone else to carry out my responsibility? I always tell myself I'll plan better next time. Do I????

Social interactions are highly impacted. I'm limited to one, at most two, hours' sitting up. Even then, I need a special chair. How much socializing can you do in that amount of time? Can you say to your friend, "I can't come in the kitchen and talk because I'm too tired?" How can you tell your friend her chair isn't comfortable for you? What about seminars or classes? Most are too long for me. Volunteering? Same problems. Using the phone? My arms tire quickly of holding it, or my voice gives out. It's just easier to stay home than venture out, so isolation becomes a colossal problem.

So now you know some of what my life is like. I'm only one of thousands and thousands of people with life-altering physical challenges. Look around and find someone you can help even if it's just acknowledging their existence by saying "Hi," or praying for them.