Ok fine!
I admit that denial of MS and its friends mental and physical stress is a battle. They go together and share equal importance. One affects the other. I had unknowingly adopted both.
Years of mental struggle and talk-therapy led me to medication eventually. I am not one to rely on pills. I try several options, before I let pills win. Anti-depressants are, for me, a must now.
I take a teeny-tiny dose, but it helps. It gets Continue reading
We all have that New Year’s resolution bug. For MS folks a fresh start comes every day, really. We learn that even tying our shoes in two tries instead of three is a fresh start.
It can be hard for many to see joy in the simple things. Just getting my hair in a ponytail is worth celebrating, for example. If people would take joy in simple things, maybe Continue reading
Aside from eating lots, being merry, and not worrying about the summer heat, we try and keep some traditions. Napping with a cozy blanket, of course, is a given. As my boys have grown, some Christmas traditions have changed. Some changed for the better, others I miss, and some result in teenage whining.
For a family photo, I have had the boys make Continue reading
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.