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 muscle, 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.
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. 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…opps, we’re sorry. That was an involuntary spastic moment.
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.
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 things in the room begin to move around? Yeah, we live there. Who needs an amusement park when we have a roller coaster in our heads everywhere we go. We can tilt our head a certain direction and we’re off on the most exhilarating ride of our life.
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. We can go from the extreme of not being able to go to “I gotta go NOW!” One positive in it all, if you ever need to know where the nearest bathroom is…just ask. We know the fastest escape route to every bathroom on the planet.
We forget often: scheduled appointments, birthdays, 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.
Yes, we experience pain. Lots of it, too. It’s not pain like when someone is stepping on your foot either. We are in pain because our nerves are misfiring and sending incorrect signals to our brain. And just in case you were wondering, Tylenol doesn’t help. You have to stop the communication process, not the actual pain. Sadly, MS pain never gives us a day off or allows for a time-out.
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.
Heat causes chaos to our already damaged nerves making our symptoms a hundred-trillion times worse than normal. Add humidity to the mix and it becomes an unbearable situation. The cold is just as bad for many of us. Someone once said that there’s a place where the temperature is perfect all year long. It’s call “My Imagination.” Have you heard of it?
Aside from the long pauses we take as we search to remember words, our voice can sound weak, winded, choppy and soft. 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 Drive-thru ordering can be comical…”So, you want lettuce and popcorn on your hamburger? Really?” Regardless, we have a lot of wisdom, so pause and take the time to hear it.
Mood swings are real and we have them more than we 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 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.
Oh, the terrors. Itch, itch, itch…scratch, scratch, scratch…and not a mosquito in sight. We probably look like a ninja contortionist as we uncontrollably scratch at different parts of our body without any visible reason, but when our skin itches we just want it to stop. We have been known to scratch our skin raw in the process.
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 make a good breakfast chef if anyone’s hiring. When it comes to cooking scrambled eggs we could whisk those eggs to pure fluffiness.
MS can cause muscle weakness in our respiratory muscles giving us one of the most uncomfortable hugs ever. The MS Hug feels like a boa constrictor has wrapped itself around our torso and refused to let go. Good news: we are still breathing. Bad news: we have yet to discover the secret to breathing fire. I blame my breathing difficulties on the fact that my dad took my nose when I was 3 years old and forgot to give it back.
Hearing loss, fluttering sounds, and ringing in the ears can be frustrating. For many, it feels like water has been trapped in the ear muffling sounds. Between that and the ringing, we carry around our own heavy metal band in our head. Although, sometimes our lack of hearing can be voluntary due to people being ignorant and saying stupid things that we don’t want to regret responding to later.
Something people don’t like to talk about, but just because sex isn’t talked about doesn’t mean it’s not a problem. Numb body parts, disrupted nerve signals and emotional changes makes intimacy 100 times more difficult. Patience, understanding and lots of care is needed. Well, that and maybe some chocolate, or bacon…or chocolate covered bacon.
Our headaches can be caused by many things: medications, lack of sleep, damaged nerve receptors, depression, a bladder infection, steroids, stress, and of all things… annoying questions. “Have you taken an aspirin?” is not an appropriate question to ask us about our pain. Neither is a response telling us it’s all just in our head. Really? MS…in our head? Who would have thought?
Not all seizures are the same. It’s possible for us to have the typical kind with uncontrollable jerking movements, but we can also experience lapses of consciousness without any movement at all, experience a “drop attack” where our legs turn to jello causing us to drop to the floor, and have moments when we appear to be wide awake but are completely non-responsive. Those are all considered types of seizures not new dance moves.