This is a process that is very different for everyone. It is not easy to face the monster. It is often a lonely quest. Questions, nervousness, unknowns, anger and shock tend to be its odor. Stinky.
My story is too long to write. You would get bored. It was so long ago and re-living it does not help me much. It changes and we change with it. Faith, for me, has been my only rock.
It started when I was 16 and involved nine months of Continue reading
Here it comes! Cooler weather (hopefully) and the munchkins go back to school, as fall arrives. Smell the crispy leaves (or not) and hear the silence. It also means for many of us, no help.
Most of us are masters at adaptation. Embrace the Continue reading
By Lauren Kovacs
Funny, not so funny. I know MS is really a mean demon. It tries to throw peanuts at you like a demented circus clown. I hate clowns.
Try and find humor in it, where you can. Be silly. Wear what you want, for example. Try and do what makes your moment. MS changes all day.
I can only wear certain sneakers. I like silly sneakers. Being in kids shoes, I wear whatever ones I like. The ones with lights are not yet in my closet. I have some dignity; however, I love my pink polka dot Chucks and my Sketchers with sparkles.
I do have some adult-restraint on apparel, but not too much. I wear only pull-on shorts/pants now. I kinda had a funeral for my button shorts/pants. Go crazy. There is little control with MS. Control your wardrobe. I am not saying wear big red floppy shoes and an orange wig, but have some fun.
Laugh at yourself. I fell at the doctor’s office recently. I jumped up and shouted, “I’m ok!” I didn’t really jump. I kind of slither up my walker. The only thing was a wee bump on my ego. Chocolate is great at ego repairs, too.
I once told a MRI technician that my lesions light up like a Christmas tree and I recommend he wear sunglasses. When he had to stick me eight times for the IV, I could not find any humor in that. I do not identify well as a pin cushion, and then spending almost two hours in a Pringles can they call a MRI was not funny.
Find humor in MS. Laughter is the best medicine, they say. I have to use a life vest in my own pool now. I call it buoy training. I have very little control in the water now. I would be a floating chicken nugget for a shark, if I was in the ocean.
MS can be very depressing. It is like MS jail. I had to turn in all my talents, before the life-long stay. Heck, I had to turn in my coordination, too. Trying to drink grapefruit juice out of a cup ended up on my face and in my hair. That hand earthquake left me with a burning eyeball. Make light of stuff.
Laugh off your quirks, when you can. If you laugh at yourself, it helps you and others move on. I know MS is mean and a thief. Making light of most MS incidents can help you not to dwell on the MS monster as much.
By Lauren Kovacs
Most of us with MS see travel as a visit to an energy sucking monster. At least, it is a trip I avoid. Ok, fine, my voyages include a trip to my couch most days. If I am adventurous, I might go to a drive-thru and get ice coffee.
There are handicapped-type plans you can make. When booking a hotel stay, ask for a handicapped accessible room. They generally have more room in the bathrooms and have shower grab bars. Grab bars in the shower are a must. I also found a travel shower chair. Continue reading
By Lauren Kovacs
Alternative approaches to MS are pretty personal. Many of us will try just about anything to add to our medication routine. Short of crazy stuff like putting fried eggs on my eyes or sleeping with spiders, I am guilty of trying lots of alternatives.
Some things might help some. I heard massage is great, but it turns me into a sleepy blob. Too relaxed? As if I don’t already fight the fatigue monster 24/7, massages rubs me into a sloth. Not for me. Continue reading
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.
By Lauren Kovacs
I know this is very hard. Fear is paralyzing, even without MS. You wonder why you didn’t wear your brown pants when trying something new. I am not suggesting Bungee jumping in your wheelchair or am I?
Branch out a bit. I skied the Swiss Alps, was a gymnast, a college cheerleader and hiked the Highlands of Scotland. Physical freedom may be way out of reach now for most of us now. Wheelchair wheels don’t do well in mud and sheep poop. Do something small instead. Be adventurous. My adventurous thing is leaving the house wearing regular jeans.
Try something new to you. People may not be impressed that you can do something, but you might. When I rode horses, for therapy, they had me ride backwards to work other muscles. I hated it and was terrified. But, not many people have seen the southbound end of a horse while it walked around the ring. Try. You may surprise yourself.
I have terrible hand coordination. I got a Knifty Knitter hoop and made hats. Takes me days, but when I am done I know I accomplished something. Others may not appreciate your hard work, but you know. Maybe you need to see and touch your accomplishments.
Pick a new thing and try it. I tried painting with my non-dominant hand. I used to be a great painter and it was so bad my kids could not even tell what it was. I no longer paint, but I tried it.
Maybe try a new thing when no one is around. I tried painting when the kids were at school. It was an epic fail, but the important thing is to try. It was a horse in a field and my kids thought it was a rock and I had to work hard to even get them to guess.
Try things that are completely new. Painting with my non-dominant hand was a disaster. I saw the mess on paper, when I was trying something I used to be good at. It just pointed out how MS has taken everything. Don’t set yourself up for disappointment.
Now, if an opportunity involves something very new, I try it. Ok, bungee jumping will never happen. I stay away from what I used to be able to do. Set yourself up for success. Trying what you used to do might cause failure. Trying something totally new might be your thing.
You may find you are awesome at fly-fishing, for example. What you used to shy away from or dismiss could be a great activity. Maybe you can pick out great lures for fly-fishing. Playing guitar with your toes might be for you.
Gender norms might need to be crossed. I know a guy who took up knitting. Be brave. It is like when my mom made me eat Lima beans, when I was a kid. I still hate Lima beans. Don’t knock it until you try it. Feel free to knock it out, if it is not for you.
By Lauren Kovacs
You would think after 20 plus years of MS and three kids I would be good at prioritizing. I struggle with this monster to this day. It is not always easy to slay this dragon. It is relentless and seems to have many lives.
Mentally or on my phone, I try and note my path. I try and tackle one, maybe two, things a day. Try being the optimal word. I often plan the week out on Sunday evenings.
It can be hard, too, when prioritizing has a roadblock called “help”. Many of us rely on help from others. We end up waiting patiently, all while cooking in stress and anxiety.
I know beggars can’t be choosers. As if needing help for simple things is not hard enough, we must learn to function on someone else’s schedule and timeline. Their priorities never click with yours.
Make “you” the priority. For example, we go to 10am mass. It is kind of far and my sons are alter servers. I make sure they don’t smell and are presentable, and then they help me. Even with all older boys getting out the door is hard. Being a wrinkled mess, nuclear breath, and non-matching clothes don’t bother them apparently. Yet, my shoes are tied and I am always ready.
I get up at 6:30am and take my medication, eat, get dressed, do my eyeliner several times, hair only goes into ponytail or down and do any other leaving the house stuff. I save the things I can’t do for later. Some days I am completely ready on my own and others I am not.
Yes, it drives me insane, after 20 minutes I can’t tie my shoes. I may have irritated my ears trying to put earrings on, but at least my eyeliner is straight. Some days I can’t button my blouse or fix my collar.
Part of prioritizing is letting go. I only wear silver earrings without those little backs. They may not be super matchy-matchy to my outfit, but I have earrings on. If they were there from days before, no biggy.
Trying to go with the flow is torture for many of us. Most MS folks are planners. We usually have plan B, C or maybe even plan E. “E” is usually the “enough is enough” plan.
Is it essential to survival that I have different earring on? Am I at least modest in my dress to go to church? I hate dresses, but I make sure my pants look nice. Are my pants easy up and down? How easily can I get to the bathroom? The wheelchair does not fit in there, but the walker will. Are my bowels and bladder empty?
Priorities change like our MS does. Factor in everything. Is it a huge deal that you had to wear sneakers? Yes, the black boots would have looked much better. The dress pants would look good, but they have a button and zipper. Are my fingers working today? Will I be too tired?
Overthinking might, in some cases, be helpful. Choose the path with less stress. Ask yourself what you can do by yourself, if you built in extra time. If I just can’t button my shirt, I wear one without buttons or ask for help, if time permits.
Prioritizing can be exhausting. Even making phone calls is tough, when your speech is garbled. I worry someone will report me because I sound drunk. It gets worse as the day progresses.
I try and keep appointments for late morning. My day is prioritizing. Everything comes before my afternoon nap. Once I nap I wind down the day. My descent into more MS speeds up after lunch.
Making “you” important. It is a balance to do this on top of family needs. Don’t brush your wants and needs aside. I may want my hair pulled half back. Find a way to meet that want. I don’t mind having two hairstyles, but there are times I want something different.
Putting make up on is very hard. My eyeballs are used to being stabbed with mascara wands. Baby wipes are great for removing eyeliner that left a wiggly path. Don’t give up on you because MS is in that path.
By Lauren Kovacs
This is a Grinch every MS person faces this time of year. Even those who chose not to celebrate will be affected in some way. Even if you don’t bring that creepy “Elf of the Shelf” into your home, the season seeps into your life. Like glitter, it sticks to everything.
I have had to hand the holiday reins over to my family for most things Christmas. I did what I could. Each year, I find something else I cannot do. I am thankful my husband was always the cook and party planner guy.
I gave up helping decorate the tree or the house. I direct most of that now and point. Taking it down last year was very hard, especially telling the boys to wrap up certain ornaments for proper storage. (PS even fake candles melt in the attic no matter how well you store them.)
I do all my shopping online. I order online and if it arrives early and unwrapped, so be it. I let people know something is coming and to bag or wrap it. I can only do so much. The old saying, “it’s the thought.”
I keep a list of people and record what I bought and how much I spent. I can’t remember everything. I can budget and keep track of gifts all together on one list. I have a very big family. I can’t hang an ornament, but I can do the shopping part. That is huge.
Gift buying, angel trees, charity and such require a lot of planning. It can be a lot of work. Most MS folks are great at planning. Embrace what you are good at.
Not being able to stand up might make you able to decorate the tree on the bottom half. Just be sure there are no glass items down there. Maybe you can still make fabulous wreaths. Maybe give those as gifts. Take a talent and latch on. Even small tasks can bring you joy during the holidays. Embrace whatever you can. Cookie taste tester is important.
Rest/nap and keep your schedule, too. It can be tempting to skip that nap or stay late at a party. Spiced eggnog is delicious, but is it worth it? Trying to walk like The Nutcracker might not be fun. Pick your battles.
We all have to live and be merry, however. Moderation is key here! Those of us that don’t eat gluten have to weigh the consequences of eating that one cookie. Is it really gonna kill you to have one cookie in celebration? One, not three or ten. I have been known as a cookie monster. I get it.
If I have been good about not eating gluten all week and I attend a party with cookies, yes, I will skip the seaweed smoothie and eat the cookie instead. Come on, live a little. I want to enjoy the holidays and if eating one piece of fudge is more fun than liver and onions, bring on the fudge, but self-control is also key.
MS folks have to balance a great deal at the holidays. Don’t deny yourself a small treat. Think of it as a “to me from me.” Our battle is long and small prizes now and then are ok. Don’t be a glutton, but one small candy cane is not going to break the MS bank.
By Lauren Kovacs
I admit this is a tough emotion for many MS folks. I am not exactly the “glass is half full,” sparkles, and glitter type. Not sure how I survived as a college cheerleader. Many were bubbly, barf. I was more of the stick in the mud with a giant white bow.
Gratefulness has been a learned trait. I force myself to see the green grass and pretty unicorns. I often see giant animals pooping on my lawn with sharp pointy things on their heads. Many of us have to really try to be thankful. Come on! MS has taken a lot and it is not a generous disease.
Alas, finding thankfulness is hard, but we must try. I would fit in well with a Grinch family, however green is not my color. See, glass half empty!
I have to “cheer” myself on just to get to the bathroom in time. Finding things to be grateful for takes on a new identity. If I manage to tie my shoe or put elastic in my hair on the first try, I celebrate it.
Small things deserve great thanks. MS folks adapt better than most. I am a lefty, yet I have learned to apply eyeliner with my right hand. I drove my figure skating instructor nuts because I spun like a lefty and jumped like a righty. In kindergarten, I cut paper right but, wrote left. Drove my teacher crazy enough to put me in some special ed. classes. Little did I know that one day this ambidextrous trait would come in handy. That is something to be very thankful for. I still can’t write right handed, yet every other thing I can do with my right hand.
I learn to be thankful for much smaller things. Simple stuff does matter. Think about just getting through the day. Toilet paper, straws, walkers, naps and all that meaningless stuff is, in fact, deserving of our thanks.
I am thankful my boys can enjoy gluten. Stuffing at Thanksgiving would suck. I am grateful I have enough self-control to resist it. Talk about resisting temptation.
MS reveals how tiny stuff can induce great thanks. I am very thankful for anti-bacterial wipes. I can de-germ my walker and wheelchair wheels pretty easily. Think about where they go. When I did horseback riding therapy, those wheels went over horse poop.
Even though I have had to give up my jeans, being small enough to wear fun kid-size leggings is a trade off. Yes, I have lots of sneakers too, but less of an ankle injury risk than heels. I am truly thankful for that.
It may take some thought, but we can find stuff to be grateful for. It might seem simple to some. I get weird looks for being thankful for my piggy dog, but he cleans up all the food I drop on the floor. He is now on a diet though. Poor guy. He loves food.
I am thankful for having a life jacket. Drowning in my own pool was not on my bucket list. Small things to be grateful for shows humility. It can be fun, too. I love that I can paint my own nails, if I use glitter polish. Covers the mess well.
When going around the table talking about what you are thankful for, think. Small things show that you have character. It might make someone else see how blessings come in all sizes. I personally, am grateful for whoever invented elastics for pants. Sweet tea is a close second. Electric toothbrushes are a lifesaver, too. No swamp mouth.