I’m sure that you’ve had people ask you about your symptoms… friends, family, health care team, etc. That doesn’t seem like a ‘loaded’ question, but in all reality it is. We’ve probably found the symptoms we’re trying to explain at times, but the scientific name is too hard to remember, too hard to pronounce, etc.
However, one thing that I’ve come to notice is that just explaining the symptom… what it’s doing, what triggers it, etc. is VERY difficult to explain. I mean, especially when you have cognition issues… it’s like trying to explain something that you can’t find the words for.
For the longest time, my vision was affected from the get go… and I was trying to explain the symptom of my vision issue… but there just weren’t words to explain it besides… weird. Now, that doesn’t really narrow an MS symptom down, because most of them are all weird. Now that I’ve educated myself on MS and it’s symptoms, I can explain things a little better… but notice the key words… a little.
I once took a video of my leg, because it was freaking out. That’s the only way to describe it. My thigh was literally freaking out and it was like I had jumping beans inside my skin, and they were having a party in that certain area. My doctor loved my explanation of what was going on, for one, but showing him the video, which we can’t always do, because not all symptoms are visible… but he could tell from the video and my ‘odd’ description that I was dealing with tremor.
Not to mention when I sit there and even try to discuss things that I’ve noticed, or if I’m trying to describe my symptom to a friend, I get a big case of ‘cog-fog’ and have no idea what I’m trying to explain…. The words are in my head, but I can’t compute it to come out of my mouth. It’s the most frustrating thing to deal with!
I remember one time I was sitting there explaining to a friend about walking issues… and how it feels when your foot is asleep and you can’t wake it up because it’s lazy. Imagine dealing with that at random times due to MS? When it doesn’t just ‘wake up’ when you tell it to… I’ve had a full conversation with my foot before, encouraging it to wake up… in front of people… at least I’m providing entertainment?
So, the moral of this whole story is… when people ask us to ‘explain’ our symptoms that come with MS… it’s much easier said than done, on their part. Because it’s not easy to say on our part, that’s for sure.
Don’t take this as we don’t want to explain it to you, or that we don’t know what we’re talking about… there are just no words for the weird things that accompany multiple sclerosis. I mean, we can look up symptoms of MS, but the ‘definition’ doesn’t always match what we’re going through, so then we have to wonder… “What is it really? Is it multiple things at once? Is it something else besides MS?” There are so many different factors to take in to account, that it’s hard to get it all figured out! This doesn’t even cover the ‘embarrassing symptoms’ of MS… because who wants to share that publicly… but that’s a whole different story.
Anyways, that’s something that I had to deal with not too long ago, and thought I would share my frustration!