"But You Have So Much Time"
“You must have so much time on your hands” is something I’ve heard numerous times when I explain my current situation in life, that of a 42-year-old single, disabled man with multiple sclerosis who is stuck at home, unable to work. It’s not exactly an incorrect assessment of my day-to-day life, but it’s not quite the truth either. While my condition does leave me with a lot of what could be considered “free” time, very little of that time is actually usable. Having an abundance of time where you can’t really be productive is actually a huge source of frustration for a lot of people with chronic illness.
An exorbitant amount of free time
I definitely find myself with an exorbitant amount of free time; at least, from an overview, it seems that way. I wake up and don’t have to go to work. In fact, I have weeks where I don’t have to go anywhere at all. You could argue that if I didn’t have my dog to care for, I don’t even really have a reason to wake up in the morning. While at first thought, that may seem welcome to some folks, I assure you, it gets old very quickly.
Struggling to find a purpose
When you feel like you don’t even have a reason to wake up, life sort of feels a bit pointless, particularly at such a young age. It’s no wonder depression is so prevalent among those with multiple sclerosis. Struggling to find a purpose continues to be a significant issue in my life. As much as folks may complain about going to work every day and doing the daily grind, please imagine going from that to suddenly not even needing to wake up. I’ve nowhere to go, no one to support, and nothing to do, and it’s maddening.
Much of my time is unusable
No purpose but a lot of time, surely you can come up with a purpose! Seems simple right? Just go volunteer or something like that. With all that free time, you can do whatever you want. Yes, I’ve got plenty of time, but the reality is, is that a lot of that time tends to be unusable and unpredictable. The reason I don’t work and have all of this time is because my body is in shambles. I do have moments where I can crank out an article like this or maybe even do laundry, but I have just as many, probably more, moments where I feel pretty awful.
Fatigue, pain, and cognitive issues
I’m so fatigued I can’t even sit up, or my legs are in so much pain, I can’t concentrate on any task at hand. I have times where I can’t even just lay there and binge Netflix because my cognitive issues prevent me from following along with whatever show I’m trying to watch.
The unpredictability of my symptoms
Perhaps more infuriating than these actual symptoms is the unpredictability of them. If I knew when my body was going to fail me, I could actually plan around it and make more use of the time that’s been allotted me. That’s just not how it works though, my body can go from decent to unable to even get up and use the bathroom in a pretty short time. All of this makes a large chunk of my free time unusable.
Be careful what you wish for
I’m sure there was a time when I constantly kept wishing for more free time. I wish I had been more specific and wished for more usable free time instead. These days, I have full days when I basically do what I need to in order to survive, and there are many times when I need every second of that time to get it done. There are also many days when I still need help from others, too. I don’t bring any of this up for sympathy, but rather to explain to folks that things aren’t always as they seem. Someone may not be working, they may be home a lot, but that doesn’t mean it’s a good thing, and it doesn’t mean it’s easy. Far from it. This kind of free time feels anything but free.
Thanks so much for reading and as always, feel free to share!
How do you feel before getting an MRI done?