I’m not sure how to answer someone who asks “What’s it like living with Multiple Sclerosis?” Uhm…there’s just not a simple answer to that question. Trying to describe the physical and mental difficulties and limitations that I experience because of MS is often met with some interesting responses from others.
I’ve been told to “take Tylenol” for the pain in my body, to “eat more potassium” for the cramps in my legs and hands, and to “take B12 and energy pills” for the exhaustion. When I explain that those things simply don’t work for me, they look at me like I’m a one-eyed purple polka dotted crazy person. After all, it works for them so it should for me too.
Some people just don’t seem to understand that those of us living with MS aren’t like them. We have a damaged Central Nervous System and our immune system is in chaos causing our own body to attack us. Some of the damaged areas to our nerves have healed well over time but some haven’t and new damage appears all the time.
The pain we experience is not because we are in real pain like someone stepping on our foot. We are in pain because our nerves are misfiring and sending pain signals to our brain when there is no real existing pain in the first place. To stop the pain you have to stop the communication process, not the actual pain. There are some medications that help to disrupt this broken communication, but I haven’t found one yet that works for me.
The numbness in our body is not something that goes away by uncrossing our legs like someone does when their foot falls asleep. Parts of our body are numb, experience that “pins and needles” feeling, and cause pain to shoot through our body every minute of the day. No amount of rest or exercise will wake them up.
The exhaustion we experience isn’t because we didn’t sleep well the night before or because we aren’t eating nutritionally. It’s a debilitating symptom of the disease that is not remedied by natural herbs and better sleep. Although those things can help, it’s not a “fix”. Making it through one day without having to take a nap is a good day.
Many of us also deal with vision problems that can’t be corrected with glasses, dizziness, muscle weakness, bladder and bowel dysfunction, breathing difficulties, and of all things, heat makes it all go into supersonic chaos.
That hot shower most people enjoy, we can’t take because our muscles will go bonkers. That hot tub soak, an impossibility. That day at the beach, even in the shade our symptoms can be hard to deal with. That trip to the mall, within thirty minutes many of us are done. Just making our way across the parking lot of the grocery store presents a challenge that some days we don’t want to face.
But through it all, I have learned to look this disease of MS square in the eyes and say, “I am not defeated because of you and regardless of what happens in life I am thankful for each new day I am given.”
We will never understand all the why’s in life. Why MS? Why now? Why me?
Stop questioning why you are going through the storm you are currently facing and determine to be thankful as you go through. You can be thankful even in the most horrible of circumstances, but it’s a choice; and you have it within you to make that choice. You can stand up (even if only on the inside) and say, “I refuse to be defeated by MS.”
I have learned that strength isn’t measured by the amount of things I can do or by how big my muscles are, it’s determined by the attitude I have while going through the difficult times in life. You are doing it. You are making it. Square your shoulders back and hold your head up high today because you are STRONG even though your body is weak!