What is Multiple Sclerosis (MS), like?

What is Multiple Sclerosis (MS), like? I see the question “how do you explain MS to others?” frequently in MS social media support groups. If the information is needed to tell adult loved ones then the suggestion to take the loved one to their next MS neurologist appointment is given. There are usually a few links given to a Multiple Sclerosis Society website for literature also. Usually the question is asked because the loved one just doesn’t understand or sometimes believe the Multiple Sclerosis effects.  Well, I thought I would take a try to explain part of my MS in a way that non-MS can visualize.

When I was diagnosed, I described my MS to my kids as having sandbags tied to my ankles. For my then estranged husband, I gave literature. He just skimmed the possible effects and decided that meant I had them all. Well, no, but he is now an ex.

So, here we go.

MS patients are Snowflakes; each patient has their own set of symptoms and each symptom has its own severity level. Here I will explain what it is like to have my stamina and foot drop.

Foot drop is where the communication path between the brain and the muscle that lifts the front of the foot and toes has broken down. The body will try to fix it. Sometimes it will seem to succeed. Sometimes the path may work better than others. Sometimes the path will work less than others. I have had foot drop since my last relapse. 

MS patients frequently spend many times more energy to do something than a well person. Please let that sink in for a moment.

Now, here is the description.

During most of my typical day, walking is like having toddlers sitting on my feet and wrapped around my legs.

During my typical worst time of day, it is like adding a preschooler to my back with their legs wrapped around my waist and their arms around my neck and shoulders.

During my typical best time of day, remove the toddlers and the preschooler and put a heavy hiking boot on my dropped foot. Oh, moving is so much easier! My walking speed even increases.

I say typical because MS likes to keep you guessing. For me, heat, humidity, and fevers will sneak up and bump me up at least to my worst time of day. Sometimes heat, humidity, and fevers are like replacing each toddler and preschooler with multiple cinder blocks. Old, healed, symptoms may be added to the mix as well. To keep things interesting, MS will randomly bump you to a worse level without your usual triggers. I describe this as having a cinderblock wall in your path where there is no way over or around. You are stuck finding a way through the wall or back tracking for another path.

The goal is to find the right Snowflake mix of diet, exercise, treatment(s), and maybe device(s) for you to minimize your worst time and increase and maybe improve your best time.

If any of this describes part of your MS, please share it with those that wonder what your MS is like and let them know exactly how *much* it is a part of your MS. What are your symptoms that others don’t understand?