I am Not a Flake! Multiple Sclerosis is So Unpredictable!

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 fatiguemight 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

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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