I have been fortunate to have several influential people through my MS journey. I reflect on them based on the struggle of the moment. Every moment with MS changes. Thus, influence changes.
I look to my mom who was a military wife for years. She carted four small kids all over to globe to meet my dad at his new duty station. I reflect on her when I combat new MS monsters. Fear of the unknown is not going to get me.
I look to a gymnastics coach I once Continue reading
This is the question.
I used to be super organized. Years ago an older MSer told me that I will learn to conserve energy in my own way. She was right. Being organized can cause energy conservation.
With three sons and a husband, organizing consists of piles. They usually have no idea where something is. When they ask me I say Continue reading
It is tough when dealing with MS. You don’t want to be the burden and the boil on someone’s bum. But, you also don’t want to seem stubborn in not asking for help. The winds of MS are blowing at each other. I get it.
Sadly we have to buffer the winds. Bad hair days from those winds are common. Keeping calm in the wind storm is hard. MS is a strong contender. Being calm can help avoid a flare.
Not easy to please others by asking for help, keeping your Continue reading
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