The Ponds of Socialization

Posted on December 19, 2016 by MSAA

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.

Wellness Covers A Wide Field

Posted on October 21, 2016 by MSAA

By Lauren Kovacs

Staying well encompasses physical and mental skills. Everyone has different needs and tricks. The key is to find what works for you. Maybe you choke up on the bat or spit in your glove.

For me, gluten reduction helps me stay ‘well-ish’. Eliminating it completely caused massive weight loss. I figured it out when my beloved donuts caused me to be super floppy. It turns out too much sugar contributed to the wet noodle effect too.

I did therapeutic horseback riding for years. It improved my gait, when I had one. After years, I had to give it up. I was wobbly and I was seriously freaking my Dad out who was my official side-walker.

Turmeric seems to help me be able to walk some. I use a walker in the house to keep my circulation going. Yoga helps, if you have energy. I like seated Yoga or I find exercises geared to seniors. I try to be active while reducing falls by being seated.

I schedule my day of any activity between 9-12. Not ideal, but I am worthless after lunch. I am in a different body, after lunch. I take half my “awake” medicine, nap and take the other half to get me through homework time with the kids. Combating fatigue is like walking a tight rope. One bobble one-way or the other will make you crash.

Be patient with yourself. We are standing in front of a pitching machine. It takes a lot of practice and there is a learning curve. You have to be ready to take a hit too. Strategy is important. Sometime you can smack the pitch and others you swing and miss.

Just like selecting your pitches, select how you respond to want MS throws at you. Days where you strike out miserably are going to happen. Maybe the pitch hits you and you have a bruise, but you advance to first base. You now have knowledge about avoiding that situation again. In my case, I learn to avoid a fall that way again.

Learn to treat yourself. Cheer yourself on out load. Positive affirming words to yourself out load can have a big impact. Just like a cheer squad helps to push a team forward, cheer for team YOU.

The Call of the School Supplies

Posted on September 28, 2016 by MSAA

By Lauren Kovacs

We all dread it, as parents. The school supply trip. It beckons us and sinks its teeth in.

With three kids, this trap is one I can’t elude or ignore. I try to do it in one trip, however I usually go to a dollar store first. A big box store is my final stop.

Going early in the morning helps avoid oppressive summer heat. My kids are on a year round schedule and it is a must. I like to avoid the real scary call of the wild by not going later in the day.

I have recruited my little troop of squirrels. They each are sent into the shelves to finds an item, while I am the list holder. I busy myself by looking at the new boxes of crayons. Even though they are past using them, a box always shows up in our bags at checkout.

I coordinate from my wheelchair. Once they find their nut (supply), it goes into the cart. After our adventure is complete, I reward them with a treat (candy) and the call of the school supplies is silenced.

There are always random things a teacher wants. I turn to the net for those. It saves me a trip out.

Reward yourself. Buy a muffin or donut for yourself. It takes work to get those supplies. Share in the joy of new school stuff by treating YOU.

Cut the Deck and Deal the Cards

Posted on August 26, 2016 by MSAA

By Lauren Kovacs

This is a big ticket for those with MS.

We never know what our hand will be. Even frequent shuffling can deal you a bad hand.

Our crystal ball has been smashed. For me thankfully, I had 18 years of a mild MS course. I was able to work, get married, have kids and mostly be like everyone else.

I had been a college athlete and I never thought that being physically active would end. As an adult, I took figure skating, did Irish dancing and clogged. I was always up for something to excel at.

The changes associated with declining mobility are extremely hard. New ways of doing things became an essential skill. Sometimes, there is no way to really deal with the physical betrayal. When it comes to medical equipment, picking fun colors seems to make necessary medical equipment less medical.

Changes can come frequently. Cards are often shuffled and dealt quickly. First, I started needing a cane. No big deal. I bought a blue fish cover for it. A year later, the walker came into the game. I made sure to get one in pink with big wheels and a cool frog bag attached. Then, another hand was dealt. I needed a wheelchair. Not cool. I was not happy.

I again figured a purple one would be fun. Going with devices as non-medical as possible was a good way to deal with that change. I made them extensions of me. A little pinch of personality and a little bling can go a long way. I didn’t fold and stayed in the game.

Last year we took a trip and I needed to bring a walker to use in the cabin. We flew, so I bought a gray one that folded into a garment bag. I used duct tape with butterflies to make it fun.

I really hated the idea of using that walker, but people saw the butterfly duct tape. I was able to enjoy our trip a bit little more. It was still hard to get around, but I felt less disabled.

Making change fun is the only way I can deal with mobility changes. A pink walker, a purple wheelchair or butterfly duct tapes were simple changes that were not medical. Make changes as non-medical as possible, when it comes to mobility equipment. I was dealt a bad hand, but injecting fun is a simple way to make a bad hand livable.

Summer Love

Posted on July 20, 2016 by MSAA

By Lauren Kovacs

Summer is a double edged sword for many with MS. Making the monster happy is a battle. While winning the war may not come until a cure, small victories can be celebrated.

Heat is a battle most of us fight. Staying cool is essential. Cooling vests with the ice packs work well. I don’t enjoy looking like someone on safari suffering from some weird allergic reaction, but it is better than the alternative. Lumpy ice packs stuffed into a vest are not a fashion statement anyone wants to make.

Stick to a routine, as much as possible. I know having kids home for the summer is like herding drunken cats. As a mother of three boys and being a frequent wheelchair user, I am very familiar with the struggle. Pick an activity indoors, like bowling. It is cheap and you can bask in the A/C with caffeine and cheese fries. You can still participate from a comfy chair.

Fatigue it my number one enemy. It cuts me down with one swoop and then stabs me to be sure I stay down. Coffee and soda are the poison of choice for many. But, as caffeine is a diuretic and liquids have to exit the premises, these are not always good options for those of us dealing with tight time limits on the bladder. The caffeine crash is another unsavory blow.

I have found timing is everything. Time medication and naps to your daily needs. My secret weapon is caffeine gum. Chewing caulk-like gum is gross, but it gives me a wee kick without frequent trips to the potty. Using the potty, for me, has its own gymnastic routine. It also means using precious energy. I feel like a gnat in winter already. I cannot afford to use energy on potty breaks.

Take summer slow. Summer days drift away so fast, but enjoy it too. MSers are great at balancing. Enjoy what you can, when you can and however you can. Sitting in a lumpy cooling vest chewing caffeine gum is far better than missing out.

The Social Butterfly

Posted on June 17, 2016 by MSAA

By Lauren Kovacs

Staying social is a huge obstacle for many people with MS. Even before MS, I was more of a wallflower than a butterfly. Now, I struggle with my inner hermit. I think I might be allergic to people.

Like a butterfly that has two wings for balance, so does a social life with MS. Balance is key to our safe and an even flight into the world. We cannot fly with one wing.

Socializing outside can inject heat into your plans. Just as you pack for a beach trip, pack your MS bag. Be prepared for anything. Good thing my sons are Boy Scouts. Being prepared is their theme.

Planning ahead makes for a smoother flight. Look at the temperature and the humidity level. Know where and how close bathrooms are. For me, heat boils my guts. Bubble, bubble toil and tummy trouble is my summer cheer.

Stay cool however you can if you are outside. Jumping into lake water might be your only option. In my case, flopping off the edge of the boat or being thrown in is my method. Air conditioning is best. Don’t suffer in silence. Butterflies are silent creatures, but let people know when you are too warm.

You need to know your limits. Boating above 80 degrees with high humidity is not an option for me. The lure of delicious KFC chicken and a good time are not enough for me to risk turning into a wet noodle with tummy issues.

Be a social butterfly when you can, on your terms. Butterflies are cold blooded and like the heat. However, like there are thousands of different butterfly species, heat effects us all differently. A wet rag slurring his or her words is no fun to be around. You don’t want to be a hermit, but socialize smart.

If my feet are cool, I feel better. Investing in several pairs of sport/water sandals is a must, for me. If I am neat water, my feet are in it. I always make sure to get a fabulous pedicure. Painting my own toes is just ugly.

It is a struggle to be social in summer. Be a butterfly when it is cooler. Sitting around a fire pit at night toasting marshmallows can be just as fun as boating with friends. Slap on some bug spray and enjoy the night. Butterflies are sleeping, but the owls are out.

The Monster’s Identity Revealed

Posted on May 18, 2016 by MSAA

By Lauren Kovacs

I was only 16 and the MS monster tried out its first attack. Optic Neuritis was the flavor it chose for nine months. At the age of 21, the monster awoke again. Numb from the neck down and several bewildered university sports medicine doctors pushed me to seek help from another doctor.

The doctor told me it was a stroke, gave me muscle relaxers, and sent me back to campus. Being a pretty smart college student, I knew muscle relaxers and a stroke were not the answers.

I went and saw our old neighbor, also a family doctor. I was directed back to the neurologist from my optic neuritis days. I was not sure how my eyeball related to my numb legs.

After tests, he said it was MS. The monster had revealed its identity. He said not to research it. I was only 21 and I was not going to research it?

The university library became my new home. Because you could not see it, many of my teammates accused me of faking it to miss our long practices. I sat day after day watching my team practice for UCA Nationals without me. Still confused, I just kept reading books about MS. The internet was still new.

Now, I read anything and everything MS related. I read about alternative therapies. I visit blogs. Prayer is also still a big shield.

I write down new drugs I am taking. I keep track of side effects. I write down how new medicine makes me feel. I take charge of the MS. I am the boss.

I had to change doctors because, after five years on one treatment, it was the only way for me to change medicines. Another one, I swear, made me feel like I was making it up. You are in charge. After five neurologists, I finally found a great one. She works with me instead of feeling like I was sent to the principal’s office.

Wheelchairs, walkers, and leg braces are part of me. The internet has been the new library. I read about suggestions on everything, not always MS related. No MS topic is off limits or embarrassing either. If there is a short cut to anything, I try it.

Reading and taking charge are ways I keep the MS monster calm. I have days where I cry a lot, but chocolate is my cure. I don’t let MS rule my life. Even if I am unsure about a medication, I talk to my doctor openly about it.

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