Today I did something unexpected. I faced one of my biggest fears. James, a former caregiver who is filling in because I am so shorthanded right now, had to be out of town, and Samantha, another former caregiver helping me out, has been sidelined with sickness for a few weeks. I am still in the midst of interviewing potential new people to work for me. All of that means I spent a long time by myself today.

Alone time is something I sincerely appreciate in my life. It helps me to gather my thoughts and quiet my mind, as I think through the best way to get things done. Although it has taken some time, I am learning to enjoy my own company.

But because of my physical and psychiatric circumstances, my spending too much time alone can be difficult, if not dangerous. If I attempt a transfer by myself, from my wheelchair to my bed to take a nap, for example, one wrong move could mean my falling and breaking a hip, and potentially being on the floor in pain for hours. And sometimes, when I spend too much time alone, I get in my head too much, if you know what I mean.  My thoughts just race and there is nothing to distract me.  So a day to myself always sounds good in theory, but anxiety is also a huge part of the prospect. Therefore, it is rare that I spend an entire day by myself. The idea of doing so kind of scares me.

James told me a few days ago that he had to be out of town for the day, and although I definitely felt the fear, I was also intrigued. I wanted to see if I could spend the day by myself and be productive, without any major pitfalls.

Preparation was key. Last night I enlisted James’ help to put the food that I was going to eat today on the lower shelves of the refrigerator, so I could reach it all.  It’s totally frustrating to be hungry and have a refrigerator full of food that happens to be out of my grasp. Then I made sure that all my supplies were where I could reach them. That means I put a package of baby wipes in the bathroom on the floor so I could pick it up, made sure the towels in the closet were pulled forward to the edge of the shelf, and I had easy access to several “reachers” (long metal instruments with a hook on the end and a trigger control that opens and closes the hook. Perfect for when I drop something and it lands just outside of my arm span.)  When I went to bed, we left my shoes on, since I cannot put them on myself, and I am much more stable in terms of balance when there are shoes on my feet.

Nerves had me rattled when I woke up this morning; I am not going to lie. Thoughts of all kinds of potential disasters niggled at my awareness. So when I pulled myself to a sitting position, changed my t-shirt and was about to transfer from my bed to my wheelchair, I said out loud, “This transfer will go extremely well and I am incredibly safe.” It worked. I proceeded without incident.

Throughout the day I broke everything I had to do into steps, and I talked myself through each one before I started a task. Before beginning anything, I told myself out loud that it was going to go well.


I did everything I could do for myself today. That list included feeding Leah, my service dog and giving her all the medication she needed, making all my meals (including cleaning up after dinner) completing the laps on my parallel bars, and filling out and scanning lots of paperwork I had to finish. There are sometimes when I have caregivers help with that kind of thing when my hands are refusing to cooperate.

Some things I just can’t do without help. Full disclosure is coming. I am still wearing the sweatpants I slept in last night, (I much prefer sweats over pajamas) because I can’t get a different pair of sweats over my shoes. I will put on clean ones when James comes to help me into bed tonight. (But we have all done the same thing when going  camping, right?)  I also cannot rinse out my CPAP machine, that I use because of my sleep apnea; there are just too many parts that require the fine finger dexterity that eludes me. Go figure.

All in all, it was a good day. Exhausting and empowering all at the same time. If you want to know if I want to do the same things all the time, the answer is “no.” Just because I might be capable of doing something does not take the stress away from it. And just because I can do something physical successfully once does not minimize my fall risk on days when I am more unsteady. My experience today only solidified my need for caregivers in my mind.  But it was nice to discover all the things I am truly capable of and to know that list is longer than I thought it was.

Today I discovered something else very cool as well.  You know what can happen when you face one of your biggest fears?

You just might kick its butt!