Time Out of Mind
Ever since my multiple sclerosis kicked in, I am suddenly the person who is late. I find myself running ragged trying to complete projects when I should be farther along. It seems like whenever I check the time, it is always much later than I thought it was. Where is the time going? It wasn’t that tasks were taking longer to do. I already learned to build in an extra 30 minutes to an hour to accommodate for any physical problems. No, this is just is minutes slipping away. Minutes that turn into hours.
Finding myself in a strange time warp
One day, I mentioned this to one of my MS buddies. I learned that I am not alone. She also experienced the same phenomenon. We shared our misery of finding ourselves in a strange time warp. There were stories of being late to important occasions, and phone calls were also on the menu. How often had I been preparing for a meeting only to glance at the time on my cell phone and see that somehow I was entering the Zoom meeting 15 minutes after everyone else? My frustration only grew because I was already trying so hard. I set out to understand what was going on. And what I discovered about myself has been an important few steps in my multiple sclerosis journey.
I am not new to MS, nor am I a veteran
Having had my multiple sclerosis diagnosis, the official one, for five years I am not a newbie and I am not a veteran warrior. I am in that between space. I am better at understanding my symptoms. Yet, I have not made friends with MS. This means that I am regularly surprised by this quirky illness. It should come as no shock that my lost time is MS-related. My quest to locate those minutes led me one step closer to making multiple sclerosis my pal.
Neurological changes happen with MS
I knew that some neurological changes happen with MS. I obsessively read about brain volume. I read about the aging brain. I read about cognitive decline. I spent a decent amount of time doing quizzes and testing myself. I was looking for big changes. Would I start speaking word salad? When I am fatigued, I will struggle to find the exact word I wanted. There are times when that happens and I feel scared. As someone who is very happy with her brain, I get panicked at lapses. It turns out I was worrying about the wrong thing. I don’t have cognitive decline, but I do have changes because of MS. By admitting this to myself, I made a forward leap.
Acknowledging the physical and cognitive impact of MS
What I learned is that excessive pride will impede my path. I had to admit that things are different now. That my neurological impairment exists. My inability to recall a word or the occasional slip of the tongue was real. Not was real, is real. It is real, it is happening to me, and multiple sclerosis is the reason. I wanted so much to prove to myself that I was unchanged by MS. And by unchanged I mean brain-wise. I am okay with the knowledge that my body is affected. The physical pain is mentally more acceptable to me. And looking for why I was losing time, I found something else instead. I found the courage to be honest with myself and confront that excessive pride I mentioned earlier.
Working towards acceptance
Being too proud to admit that multiple sclerosis is affecting me on all levels only hurt me in the end. It kept me from finding solutions. It kept me from telling people the truth about why I was seemingly unreliable. It put a wall between me and greater acceptance. Something as simple as losing time helped me when I least expected it.
Why was I losing time? Distractions!
Just as an FYI, I did figure out where those minutes were going. Distraction. Squirrel moments. I was taking too long because in the course of getting ready I would notice little things here and there. It might be skincare samples that needed to be organized or looking for some lost item. Mostly, it was me reading and hoovering up information. An article here and there along with Google searches were the culprits! A word of advice, if you have something you need to do, you may want to put down your cellphone or get off the computer. Easier said than done!
Does your employer provide workplace accommodations due to your MS?