Lately, it feels like every time I decline an invitation, or say I can’t do something (which by the way it KILLS me to say I can’t do something), or complain about not being able to go somewhere because of the heat, I’m being judged.
Not an excuseI have even heard people chat about me when they didn’t know I was nearby or in hearing range, say that I’m just using my MS as an excuse. Think of this as a follow up to my article, Last Minute RSVP.
I would be honestNow, the people that state these kinds of things don’t really know me, because they would know better than that. If I don’t want to do something or go somewhere, I’m just not going to go. I will tell you that I just don’t want to go, flat out. I know that most people respectfully decline a lot of things, but sometimes I’m just a bit too blunt, and my filter doesn’t work.
These people that make these comments aren’t even worthy of a response from me because they don’t matter in my life if they are going to be rude and disrespectful. But I have all of these people that also have MS that reach out to share with me things that happen to them and IT’S NOT OKAY.
Accepting the inviteWhen it’s over 100 degrees outside and I’m invited to a fully outdoor event, meaning there is no way to cool off nearby, I decline because of the heat. People then say I’m using my MS as an excuse… do you want to know what would happen if I DID go? Let me share that with you because I feel like some people need to have their eyes opened up.
You don’t know how it feelsI would show up and be okay for probably 30 minutes. I would then start to overheat and need to sit down, if there is seating. I would need to be chugging water to stay hydrated, instead of indulging in an adult beverage like everyone else. When I sat down, I would become very fatigued and probably be almost falling asleep in the chair. This is all within an hour of being at the so-called event.
Someone with a chronic illness like Multiple Sclerosis dealing with fatigue as a symptom is not the same thing as a healthy person being REALLY TIRED.
I’m not being anti-socialSo then what? You’re going to look at me and say, “She shouldn’t have come if she was going to be anti-social and sitting down the entire time.” This is NOT an assumption either, as I’m speaking from experience. But sitting there doesn’t stop the torture, because, at some point, I’m going to have to get up.
What you don’t seeHowever, what you don’t see is that my legs feel like they each weigh 110lbs. and my leg muscles are having tremors that won’t stop and are annoying, which at times leads to muscle spasms where it makes it impossible to move.
I need to leaveNow I’m going to have leave early because my body just can’t take it anymore. You can sit there and gossip about what happened to me, but my torture isn’t over yet. It’s only over in your eyes. When I get home, I go to bed because I have no energy to do anything else. I will want to sleep for two days most likely and have trouble getting around days after I went to the event. This also doesn’t take into account if there were a lot of people there, did I get a migraine from the sensory overload?
Not just a problem in the warmer monthsThis can also happen in the cooler months as well, so don’t be fooled. I can get overheated being inside at times. I probably pushed myself too much just preparing to go to an event (shopping, getting my essentials planned and packed up aka “The Ball and Chain of MS”. Then walking around the event, etc. It’s completely exhausting.
A new perspectiveIf you haven’t read the “Spoon Theory” by Christine Miserandino before, I highly recommend it. It’s a good way to look at what it’s like living with a chronic illness and sharing with others that do not understand.
Don’t make assumptionsSo what is the point of this article/rant? DO NOT ever assume someone is just ‘using their illness’ as an excuse, ever. It is never okay, and it will never be okay. It’s like assuming that we’re just ‘abusing the system’ by using our handicap parking pass when we “don’t look sick”. People that don’t live with what we do on a daily basis will never fully understand, and I hope they never have to.
My body is against meTo put it simply, my body is against me. It dictates what I can and cannot do on a daily basis, even if it’s against my wishes. With that being said, I’ve come to realize that the only thing strong enough to hold me down, is myself. Literally.
I don’t want to deal with what I do on a daily basis; therefore, I would NEVER use my illness as an excuse and/or cop-out.
I know my body, I know my limits, I know what I can and cannot handle. You are not me, you do not suffer through what I do, so your opinion and commentary are not needed, ever.