Keep “S’myelin” Through it All

It started off as an innocent game of Quelf. If you haven't played it, you should check it out. Well, that is, unless you have a weak bladder. It was family game night. We were sitting at the table enjoying our time together, all five of us. Everything was going good until Jake pulled a card that made him do something that was ridiculously funny. We were all laughing so hard and having so much fun until… I did not even feel the urge to go to the bathroom. I couldn't move and it was too late. It was like the floodgates had been opened. It was definitely a game ender. When I finally was able to get up, I heard Jake say “Why did she do that?” I went to the bathroom and mopped the floor, all while crying from embarrassment. This is not the reality that we like to discuss, but for many it is an unfortunate truth.

March is MS awareness month. It is often an invisible disease. A person can look perfectly normal from the outside, all the while there is a battle waging on the inside. Chronic migraines, double vision, numbness, tingling, and burning in the legs and arms have all been issues for me. I frequently have pain from my waist down that makes it difficult to sit at a desk all day. A bladder that does not empty completely, bladder spasms, and constipation followed by intermittent diarrhea, are constant reminders for me that an enemy lurks within my body. My Goliath, in all of this, is mainly guilt. Guilt over not feeling present for family at times, over making plans with friends only to break them, and for missing work due to unmanageable MS related issues.

My advice, is build your support network. They will help you. Fortunately, I have a huge one. My family and true friends understand although I have friends that have walked away. My employer has been more than understanding. I am blessed but others may not be as fortunate.

 

As my doctor has explained to me, Multiple Sclerosis is an autoimmune disease in which the body’s immune system mistakenly attacks myelin, which is the fatty substance that surrounds and insulates the nerve fibers. (The myelin is much like the rubber coating on electrical wiring.) When the myelin is damaged, it causes scar tissue (sclerosis). Damage to any part of the myelin sheath or nerve fiber causes distorted, or interrupted, messages to the brain and spinal cord. These disturbances are the culprit behind a wide range of symptoms.

There is so much that we don't understand about the disease that we live with each day, so we can't expect everyone else to understand. I think what most of us need from others is certainly not pity, but a little understanding.

We try every day to keep “s’myelin” through it all.

Karen

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