How Much Usable Time Do We Have?
Last updated: June 2022
For most of my life, I have prided myself on my productivity levels. Raised with a strong work ethic, I’ve always been someone who takes pleasure in getting things done. Whether it was a project at work or cleaning my house, I’ve always enjoyed getting as much done as I possibly could. It’s no stretch to say that my feelings of self-worth have always been very tied to my ability to be productive. Living with multiple sclerosis has really forced me to examine not only how much I can do on any given day, but how I should treat myself when I can’t get as much done as others. At this point in my life with MS, it’s become apparent to me that I simply don’t have as much “usable” time as most people.
What do I mean by usable time?
Thinking back to my past, as well as looking at my friends’ lives, I’d say the average healthy person has a significant amount of time where they get things done throughout their day. Many people wake up, get themselves ready, work for eight or more hours, and then can still come home, make dinner, and even get something else accomplished before they have to rest again (maybe they do laundry, or take their kid to a sport, or maybe they work on a hobby).
That’s a lot of time where they can be active physically, mentally or both. I think you could reasonably say that most healthy people have about 10-12 hours of very usable time in their day (if not more). It may not feel like it to them, but even if they aren’t doing what they want to do, they have a lot of time where they can be productive. A lot of time that they can use for something.
Productivity with multiple sclerosis: A slow leak
For a large chunk of my life with MS, I still managed to have a lot of usable time. I still went to work, still had some hobbies, still got a lot done. Eventually, as my disease progressed, I was still able to work but had little ability to do anything else (I was able to survive, but not thrive). Then, symptoms really caught up with me and put me on disability. Throughout those years, my amount of usable time slowly started to decrease to where I am today. For me, my usable time slowly decreased, for some, it happens quickly. I consider myself extremely lucky to have gone as long as I did, even if those last several years were hell.
Why don’t I have as much usable time?
So what makes so much of my time un-usable? Well, for one, I require a lot more rest these days. Everything takes more energy. So yea, I pay the MS tax the day after being active, but sometimes I also have to pay throughout the day too. Like having to constantly feed a parking meter, I need to stop and take more breaks than I ever have in the past. Take my dog on a nice morning walk? Well, I need to get back and put money in the meter by crashing on the couch for a bit. I lose a lot of usable time to recovery (though I try to tell myself that recovery time is still an accomplishment). Those necessary breaks add up throughout the day.
At this point in my life with MS, it seems like everything I do also takes much longer. Need to clean the house some? Well, I’m not as fast as I once was, simple movements take more effort. Fatigue slows me down, mentally and physically. Cognitive problems make me stumble mentally, with confusion that makes tasks last much longer than they should. Other symptoms, like pain and spasticity, can suddenly pop up and interrupt or slow down whatever task I am trying to accomplish. Much of these issues are also extremely unpredictable, which can wreak havoc on any schedule of tasks I may have planned out.
Living with low productivity
Having less usable time has been extremely damaging to my feelings of self-worth. Face it, whether it be at work or raking leaves, it feels good to accomplish a lot, to get things done! When you can’t get as much done, you start to feel less valuable. At least, I do. From a mental health standpoint, I have struggled tremendously since having to leave my job. I think that struggle persists for me because I struggle at home as well. All because I now lack that pleasure and feeling that you get when you get things done.
Working on acceptance
It’s something I am constantly working on, but I still struggle with. At the end of the day, I’m not even comparing myself to others, but to Devin of the past, and that’s when I struggle the most. I work on sliding my scale of accomplishments to be better in line with who I am today, not who I was years ago (or even yesterday, because some days are better than others). Still, it’s a mental hurdle that I am constantly trying to cross.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: