MS Awareness

By Lauren Kovacs

Guess what? Awareness goes both ways.

Yet another thing that MS folks deal with is awareness. You have to be aware of your own limits and make others aware, too. Who doesn’t want people to see MS? Sadly, awareness has to be spoon fed to others. Little bits. The taste is bitter so, go slow.

If you overdo the information, glazed eyeballs are the result. Some choking may also happen. Strained MS information spit back at us is the last thing we need. Like feeding a baby strained peas, take it slow. Be patient. Little bites.

I see MS awareness as conjoined twins when it comes to others. I give others the scientific/medical side and I always couple it with a simple explanation. MS is not easy for anyone to understand. Analogies help when explaining a symptom to others.

Yes, there are times I lied and said it was from my college cheerleading days. I tell them it was a neck injury from falling off a pyramid. What? I was, in fact, a college cheerleader and I did fall off a pyramid. Not a total lie. Plus it is way more glamorous and interesting. The people I have told this to were usually repairmen that I will never see again.

Lying is wrong, I know. Everyone likes a bit of drama though. I now say it is MS and let them digest it and ask questions, if they want. Boring. Most people need time to digest MS information. Awareness is part of that digestion. Frustration at others not grasping or understanding it is the greased pig of MS.

Heat and fatigue plague most of us. I never keep that to myself. This is when you get to play detective too. If you think the person can take a bigger bite, share. If not, back off a bit. You have to kind of see what the person can handle.

Know your own limits too. We are all super heroes, but even super heroes have limits. The Flash can only run so fast, for example. Super heroes know their limits and have enough humility to know when to stop.

It has gotten easier, as my MS shows now. People know I can’t regulate my temperature.  The ice wraps and frozen drinks give it away. Maybe me looking like a wet dishrag was a clue. I make the drowned rat style look good.

Explaining neurological fatigue is not easy. We don’t really have chronic fatigue, but it is chronic. It never goes away and sleep doesn’t mean energy, ever. It helps that my sons and husband see when I begin to wilt. Around others I say it politely and do what I got to do. I exit the stage and if people boo and hiss, I let them. Take care of YOU. Self-awareness is important too.

Awareness is tough, but be aware that you are the one dealing with MS on a personal level. Fatigue and heat ruin YOUR fun. We are the ones who deal with what happens when we get too tired and/or hot.

Years ago, I once got too hot and lost vision in both eyes for about 30 minutes. My life stopped. Fear tore me apart. No one else knew and life didn’t stop for them. It was a very long 30 minutes for me.

We have roadblocks and we have to find a way around them. Even if people had known, would it have made my eyesight come back faster?  If I had avoided getting hot, my sight would have been fine. Learn to be on top of your own awareness.  Awareness goes both ways.


The Ponds of Socialization

By Lauren Kovacs

Being with family and relationships are like skating on thin ice. Caution and preparation for these are something we need to do, especially near the stress of the holidays. Using some information can help us skate safely onto the pond of socialization. Having MS requires more of everything.

Like anything, we cannot “wing-it.” We cannot fly by the seat of our pants. The biggest thing to remember is to stay calm. Know your limits. Our speed is slow or “No.”

This is where knowing where the thin spots are will help.  I like to know people’s personalities ahead of time, if I can. Going to family events or parties may take some personality planning. I like to know who respects the limits of my MS. Know your audience, so to speak.

Know the thin spots and stay clear. Know what situations and who is safe. This will reduce stress. Pick events that keep stress and fatigue to a minimum.

Some people you may have to physically stay away from. Other situations or people you may have to emotionally stay away from. MS is tough enough without someone commenting how his or her sister-in-law’s cousin’s friend ate something and is fine.

Attending work related parties is part of PR for my husband’s job. I always use my chair.  It cuts down on fatigue so, I can stay a bit longer.  I am social, but in the evenings I am exhausted and the MS “misbehaves” more. My speech is garbled so, I mostly listen.  Sounding drunk at a work party is not wise. I try and eat before I go too.

Eating is very difficult for me. I can more easily refuse food, if I am not famished too. For me, it makes the gluten gods happy. I can be polite and have one or two bite size hors d’oeuvres. I don’t like to wear food in public so, I stay away from that thin ice.

If you are going to an unfamiliar place, take note of bathroom locations the minute you get there. Wear easy off clothes. When I gotta go, I gotta go now. I find thigh-high tights are easier than regular tights or hose. They are a bit drafty, but it is better than dealing with hose when now means now.

Know your limits. Don’t over party because the recovery time is not worth it. Try to stick to any diet restrictions. I mostly eat gluten free, but I allow a cookie or something. Balance for me is key. With a bit a planning, I can have that delicious gluten filled cupcake and be social. Be mindful of your limits and needs. A straw is a must and I carry an extra one in my purse. Most of all, try to enjoy the season.