I am Not a Flake! Multiple Sclerosis is So Unpredictable!
There are a lot of different symptoms that can affect people with multiple sclerosis (MS) and I have experienced so many of them over the years but one of the worst things about MS (if you ask me) is how unpredictable it is. I am not saying that it is actually worse than any given MS symptom I am just saying “super fatigue” might not be as bad if I knew when it was going to hit rather than it randomly blindsiding me when I am supposed to go on a trip or something! Maybe it is just me? I sort of have that personality where I like to know what’s coming, I don’t entirely enjoy surprises… I like to be prepared.
Procrastination doesn't fit with MS
I can’t tell you how many times I have put things off till “tomorrow” (because lucky me, I have all the time in the world) and then I wake up feeling like garbage! At this point, I just want to lie in bed and that thing I needed to get done? Yeah, there is just no way, so, tomorrow… but anyone who has ever been a kid at some point in their life knows that “tomorrow never comes”. I think MS is just not the “right disease” for a procrastinator like me. I know that if something comes up and I am feeling well at that time, I should just do it right then and there but those days are not so common for me anymore so it’s hard to say “You know what? I don’t want to sit down, enjoy a coffee and watch the Daily Show, no, I want to scrub the bathtub!” but it sure is easy to say “I’ll deal with it tomorrow”.
Making plans is challenging
But that is clearly more of a “personal issue” that not everyone may deal with. What I know is hard for everyone is making plans. The unpredictable nature of multiple sclerosis is just a key characteristic of this disease so of course that will affect the lives of those living with it. When I was first diagnosed with MS I was working on a career in photography. I did a few weddings but quickly learned that most people want to book a photographer about a year in advanced. I got lucky with the weddings I had done already but it was so hard for me to agree to be somewhere and do something in a year when I did not know how I would feel in a week! So I sort of moved away from that career path but this affects our (people with MS) personal lives as well. Sticking to the wedding theme, I have friends getting married this year, one who wants me to participate in it! This makes me really nervous because I can’t just agree now and back out at the last minute you know? Pressure! Even though I want to do this I am nervous because I just have no idea what my health will be like by then!
People think you're a flake
Well it’s not always something so “dramatic”, most the time it is as simple as a friend wanting to meet for lunch and at the last minute having to cancel. After a while that friend (and most the people in our lives I am sure) start to think we are just a flake, we are just always blowing them off. But we are not! Most of us (again, I am sure) have every intention of keeping our word but even in the course of just 12 hours how we feel can drastically change. I might agree to dinner in the morning but experience something in the afternoon that triggers a pseudo-exacerbation and bam! I can’t drive. But a lot of people do not understand this or think we are just making up excuses, I wish! Multiple sclerosis is just so unpredictable…
Do you celebrate your MS Anniversary?