Explaining MS Symptoms

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!

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

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Get Over it Already

Now, before you think that I’m trying to tell you to ‘get over your MS’ based on the title, let me assure you that I’m not. I have just come in to contact with people over the past few months, that have said this to me… maybe not with the exclamation points, but that’s how it came off to me, no matter the volume it was said in.

How do you tell someone to just ‘get over it’? I’m sorry, but I would NEVER tell someone that… unless it was one of my friends who had a break up and needed to move on cause they were stupid to begin with, but you get what I mean. I would never say that to someone with MS, or any other chronic illness. Why? Because I have this thing called… RESPECT. Yeah, I know, it’s not something that EVERY person we come in to contact with has. But, I was raised with it… along with common sense, which also seems to be lacking in some individuals these days as well too.

But back to the main point… has this been said to you before? Did you do anything about it? Or, did you silently slap in the face? Duct tape their mouth shut? Perhaps visualized having a remote control that could easily just ‘mute’ stupid? (So maybe I have a BIG imagination at times.)

So let me just get to the heart of what I’m trying to get to, so that those people out there that they we should just ‘get over it’ or ‘move on’… from having MS… it’s not something we can just forget, for most of us anyway. This is something that affects my life on a daily basis. Can you tell by looking at me that it affects me on a daily basis? It depends on who you are and how well you know me for one, but to the general population, no you wouldn’t be able to tell that it bothered me daily. That’s because the general public only sees me when I have the energy to be OUT in the general public.

If I were to just ‘forget about’ or ‘get over it already’, that would be like an out of sight, out of mind ordeal, which is something that I can’t do…. Because I have to make sure I take my daily medications on time, so that I can make it through the day without face planting my desk, having muscle spasms while walking, etc. Get where I’m going with this?

Also, by implying that I just need to ‘get over it’ says a lot about the kind of person YOU are, the person saying these things… it means you are just flat out RUDE and you should have your mouth washed out with soap, in my opinion anyway.

Yes I have multiple sclerosis, yes I deal with it every day, no it doesn’t go away, the severity of the symptoms just differ from day to day, depending on multiple factors. I’m not going to just ‘get over it’ because you think I talk about it, or bring it up just for pity or attention. I don’t want pity though, and I don’t want your attention if you’re just a rude person. When I speak about it, it is in reply to someone asking how I’m doing or trying to educate someone about multiple sclerosis, neurological symptoms, etc. I know that’s hard for some of these small-minded people to get their head around, but that’s the truth. And as they say around here, “You can’t fix stupid.”

These people that pass judgment on us, or anyone with a disability, chronic illness, etc. They are trying to cut us down because they don’t like who they are as a person, so they cut down others to try and build themselves up. It’s pathetic, really.

Let me finish this off by saying, don’t let other peoples judgments keep you from doing what you want to do, talking about what you want to talk about or anything else.

They don’t know how much strength it takes to live with this illness, where it’s extremely difficult to even get out of bed sometimes. You are stronger than you know, and we need all the energy and strength we can get to make it through each day and to fight back against MS… and I’ve learned it’s a waste to spend any energy on trying to change peoples close-minded thoughts.

Till’ next time… 😉

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.Net**