What It's Really Like
I just had an idea kinda hit me and I couldn’t wait to write it down and share my feelings about it, because it’s something that I seem to be encountering very frequently recently.
Well, I guess I can start off with how many times I get asked, “Is your MS bothering you today?” When someone talks to me, sees me, or something… cause I might be walking slow, or tired, or just not being very sociable in situations. I kinda think to myself, do they not realize that the symptoms that MS causes don’t just come and go? That’s how it is for me at least.
It might seem to outsiders that I have better days than others, because that’s true… but I think some people take is as, if I’m having a ‘good day’, that I’m not dealing with any symptoms caused by MS at all. Now, if only that were possible… I know a lot of us would enjoy that. However, I do know that there are people out there with MS, who have the luxury of not dealing with MS symptoms on a daily basis. Let me just say that I envy you for that.
I’ve even had someone tell me before, “Looks like someone woke up on the wrong side of the bed!” Which yeah, I know it’s a humorous sort of expression… but if I’m appearing ‘odd’ to someone, then there is a reason for that. In reality, even though I deal with fatigue all day long, and have to take medication to even keep me awake during the day, when I go to bed, it’s not like I can immediately go to sleep either. This graphic can sort of summarize that.
I know that a lot of people think that, well if you’re tired all day, then how can you not sleep right after hitting the bed. My body obviously likes to make my life difficult, so when I get to bed it seems like all the trouble I was having throughout the day that I forgot, come slamming in to my head when I want to go to sleep. Maybe I’m turning into Bella Cullen… (From Twilight Series, Breaking Dawn), I wonder if I will eventually sparkle! (Lol total sarcasm, sorry. And if you don’t know what I’m taking about, “You can Google it.”)
I know that I recently wrote something up about the laziness, and how hard it is to get through the day each day, but I don’t think people understand that when we explain what we have to do everyday, that we aren’t exaggerating and it’s not for just, when we need it. It’s most likely an everyday thing. Like my article “Day in the life of Ashley”, that was an example of a decent day, to say the least.
How do people NOT know that we deal with the same issues on a daily basis? Well we must be AMAZING ACTORS & ACTRESSES obviously. I mean, who wants to be a Debbie Downer all the time. This is why I try and joke about the issues I have most of the time, so that I’m not bringing everyone down around me, or complaining too much. Which I really don’t understand about complaining too much? Because I mean if the roles were reversed, and people had to walk a day in our shoes… they would finally understand that it wasn’t for attention, pity, neediness and that we were actually aware of how we complain, because I’m stubborn and I don’t really let on what’s going on with me except to maybe a handful of people on a day-to-day basis. I do let it all out in my writing though, but it’s different. I know that I don’t realize it when I complain, because I usually try and keep all that to myself… well that and my best friend who is oddly connected to me and we experience the same thing in some degree at the same time… (Yes, she has MS too.)
The bottom line is, everyone complains on a daily basis… but a large amount of people complain about the most ridiculous things… and I’m just like... How can you complain when you have no idea how others suffer?? Now I’m not just talking about me, I’m talking about everyone else living their life with a struggle, those who don’t know if they will be able to feed themselves or their family… those are things to complain about. I think people need to be appreciating more of what they do have there in life, and stop taking so much for granted. I’m one of those people and I think that I really need to evaluate WHAT I complain about, how often I do it, and to whom.
Now DO NOT take that the wrong way, you should always let out your true emotions in any form you can. Whether you vent it out with your family, doctor, friends, support groups & other ways. It all depends on your personal situation. What I do, doesn’t help with everyone. I’m just trying to share my feelings and how I’m learning to deal with them.
I recently told a close friend with MS that I try to not create drama, be judgmental, etc. But I do have my own personal view and beliefs, which are different from others. That’s to be expected, right? But I don’t think that we should be trying to like… ‘Recruit’ people to follow our own beliefs. We each have our own, and that’s what makes us our own person. Who wants to be the exact same as everyone else? That would be very boring.
I totally started rambling again, sorry. It’s been one of those days where I couldn’t comprehend or understand half the things that were said to me, I over did it doing yard work outside in the heat… and it’s just one of those days, where I just need to be like in a completely silent room with no one around and no unwanted noise…doesn’t it sound amazing? Well I’m a mother of two rowdy boys, so it sounds like Heaven to me.
So the moral of the story that I think EVERYONE should know about Multiple Sclerosis is… We are not all the same. Some people don’t experience symptoms everyday and that’s amazing. However, there are a lot of us that DO experience symptoms with different levels of severity. You may not realize it, because we hide it so well. But the symptoms, for me at least, are always there, just depends on the severity of them.
I’m not trying to discourage friends or family or anyone to ask about your MS… but I’ve come to realize that I like to have people kind of ask me in general questions, and not make statements… Like “Oh, you look so good!” or “It seems that your MS is bothering you a lot today.” Turn those two statements into questions, so that you are actually giving the person to answer in a way they want to. I think that the kind of commentary I’m referring to is in my article, “MS & Things You Should NOT Say” & I made another list a while ago, just to kind of give simple ‘ideas’ on how to approach a convo with someone with MS, when you want to talk about their MS – but not want to upset them in a way. Here are a few ideas…. “MS & Things People SHOULD Say.”
Needless to say, I’m probably going to continue on this sort of subject in the near future, so stay tuned J. One thing I will share is that one of the things that really helps boost up my mood, when I’m in a crabby mood, is Pinterest. Just looking for hilarious quotes on images, it’s amazing. Even if I’m in a ‘bubble’ where I don’t want to socialize and/or converse with someone, my head and I have a great time viewing funny things. Yes I said my head and I… I talk to myself, or have a full conversation with myself... because I feel like some days, I’m the only person that isn’t going to piss me off, or bug me. I never claimed to be normal, by the way.
Here is an example of what I mean about, trying to cheer myself up, while still being in my bubble.
I know it’s not a funny one, but it kind of explains the ‘draw’ of why I like to search for humor, when I’m in a ‘mood’.
How well do people around you understand MS?