Those long lists on medical sites that describe Multiple Sclerosis really don’t tell the full story. They list out symptoms that make MS sound no different than a vacation to the hospital for a broken toe. So here is MS according to someone who actually lives with it. Yes, there is humor in there somewhere. You just gotta laugh at MS or you will go crazy.
Much like someone who has just hiked 20 miles up a steep hill after two days of no sleep while carrying a backpack loaded with rocks on the hottest day of the year…that is fatigue. It’s that moment when your legs can no longer hold you up and every muscles, bone, and even eyelid hurts. Then as soon as you sit down (or more like fall down) you are asleep. A tornado could blow by and you would sleep right through it.
No we aren’t drunk, but imagine those times when you have experienced being drunk yourself. You attempt to walk across the floor with full intentions of simply going from your chair to the door but end up walking into walls and tables instead.
Do you remember a time when you were sitting on the floor with your legs crossed and your foot fell asleep? Now imagine living with that feeling every minute of the day, only it’s not just in your legs. Many of us have that very feeling in our arms, legs, face and body.
A constant charlie horse in the legs is more like it, but sadly it’s not just in the legs. Any muscle can be affected. One of the most dreaded is when the muscles in the ribs cramp up. It’s been given the name “MS Hug” but it’s far from being a hug. It’s more like someone giving us the biggest bear hug ever…and they won’t let go. We also have a tendency to involuntarily twitch and kick without warning. So if you say something stupid and we hit you in the head…oops, we’re sorry. That was an involuntary spastic moment.
We don’t enjoy seeing two of everything unless it’s chocolate, or not being able to read an email on the computer because the words are blurry. Many of us will lose color clarity as well. So, if we are wearing uncoordinated clothes, don’t laugh. We didn’t know we were wearing bright neon green.
You know that feeling you get when you are sure you’ve entered an unknown universe for a split second because you stood up too fast? Everything goes blank and the things in the room begin to move around? Yeah, we live there.
Who needs an amusement park when we have one everywhere we go. We can tilt our head a certain direction and we’re off on the most exhilarating ride of our life with loop-d-loops, dips and turns.
Long bathroom lines are our enemy. We can’t hold it and will give you a reason to mop the floor if you don’t let us cut in line.
Just like with the bladder, we can’t hold it, so if you don’t want an even bigger mess, please let us through to the front of the line. We can go from the extreme of not being able to go, to “I gotta go NOW!”
Yes, we experience pain and lots of it. Pain that doesn’t go away with Tylenol either. It’s a constant and we would gladly share it with you if you like. Many times we can’t sleep because the pain is so intense. Sometimes just wearing socks or lying in bed with the sheets over us hurts. Our body is on high alert all the time.
We forget often: scheduled appointments, birthday’s, someone’s name, words, phone numbers and even how to do something we’ve done for years. Multitasking is out of the question. And asking us to deal with a difficult situation that requires deep thought may be met with a blank stare because we simply can’t get our brain to work.
Mood swings are real and we have them more than we would like to admit. We have been known to burst out laughing at the most inappropriate times, like when someone is sharing a sad story about how their pet fish died. We also cry for no reason, get angry faster than normal and become extremely frustrated at things that never frustrated us before. After all, our life has flipped upside down and we are living in a world we don’t understand anymore.
Our voice can be softer or even winded as we talk. Many times people will ask us to speak up, and although we would like to and even try, we can’t seem to get the words out any louder. We have a lot of wisdom, so pause and take the time to hear it.
If you invite us over for dinner and offer us a deliciously cooked steak and we decline, choosing to eat a bowl of soup instead, don’t be offended. Sometimes the effort of chewing and then trying to swallow what we just chewed is difficult. It’s MS’s fault, not your cooking…although, if you met my neighbor you would have a different story to tell.
No, we don’t have Parkinson’s Disease…although it does look similar. Our hands, head, and sometimes whole body, can go through bouts of uncontrollable shaking and we can’t make it stop. We would probably make a good breakfast chef if anyone’s hiring. When it comes to cooking scrambled eggs we could whisk those eggs to pure fluffiness.
Sometimes we just can’t catch our breath, and no, it’s not because a gorgeous hunk just walked by.
Oh the terrors. Itching, itching, itching without even one mosquito in sight. We probably look like we are going crazy as we scratch at different parts of our body without any visible reason, but when they itch we simply want it to stop.
Most of the time hearing loss is because of damage to the nerves that control the ability to hear, but sometimes it’s voluntary and due to people being ignorant and saying stupid things to us that we don’t want to regret responding to later.