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I don’t forget things on purpose

I have had some doozie moments with my memory like forgetting to eat a meal I had prepared because I was too tired to eat it once it was ready. I took an unplanned nap and somehow it caused amnesia to set in. It wasn’t until hours later that I discovered a plate of food in the kitchen.

More than once I have forgotten an appointment I had for physical therapy. Thankfully they come to me and it ends up being a welcomed surprise visit.

I had my home healthcare nurse visit this morning…early. She called me last night to let me know of the early appointment so I asked her to call me to let me know she’s on her way so I can be up. She called and I had already forgotten she was coming. I scrounged around for the needed supplies for her visit. It was for my monthly suprapubic catheter change. She arrived bright and early at 7:00 AM. Thankfully I had enough time to make a cup of coffee before she arrived.

The bad thing about early mornings is I always forget what I have planned when my alarm clock goes off. I have to make a note and write a message of my computer to let me know why the alarm is sounding off. I have been known to silence the alarm and go back to sleep not realizing what I just did. Thankfully I have not missed an appointment only barely made it in time for my name to be called.

One night I opened a candy bar and for whatever reason I set it down on my lap, got myself comfortable in bed, then forgot to eat it. What? Who opens a wonderful, delicious, amazing Kit Kat candy bar and forgets to eat it? ME, that’s who!

At around 3:30 AM I woke up and could smell chocolate. I didn’t quite know what to think as to the reason why. Still no recollection of the candy bar. I used my hands to help shift my body to a more comfortable position and it was then that I felt something strange. There was melted chocolate all over me.

I had to take a shower to clean myself up then stripped the sheets off my bed and threw everything in the washing machine. I didn’t have the energy to do anything else. I actually took a vacation on the couch and drank my morning coffee as I chuckled about my crazy brain fog moment.

One of the things that frustrates me quite frequently is when I can’t put my words together in coherent sentences. You know, those doohickies and whatchamacallit phrases. I have even made up words that don’t exist and expect people to know what I’m saying. Somehow they do.

My brain seems to have a mind of its own with no plans of sharing them with me. All I can do is laugh in the moment and not take my brain fog moments too seriously. It is what it is.

The ABC’s of a life with multiple sclerosis

Life with multiple sclerosis is filled with some crazy, unexpected and painful moments. It’s not a disease for wimps, that’s for sure. Here are some of the basics of living with MS.

A – awareness
There is still a huge lack of understanding by the general public about MS. We are not contagious, we didn’t do something to cause MS in our lives, there is no known cure, and it’s not all in our head…well actually it is. Our brain MRIs prove that.

B – brain lesions
That’s just a fancy way of saying that our brain has wounds inside. Some of them heal well while others leave nasty scars that disrupt the communication along the nerves that make our body work. That’s the reason we do the things we do…most of the time. Some times it’s just who we are and has nothing to do with our brain.

C – cramps and spasms
Our muscles tighten up causing us great discomfort and pain. Any muscle can be affected from those controlling our hands, to the ones around our ribs, to those that move our big toe. Think of it as a constant Charlie Horse, just not in the leg.

D – drunk walking
We have full intentions of walking without bumping into things but it seems the walls, floors, tables and chairs have become our friends. They need some love and appreciation from time to time and we just so happen to be the ones to give it to them.

E – eyesight problems
Our vision can become blurred, doubled, dimmed or even gone. Sometimes it’s even accompanied with pain and color loss. So if you see us wearing uncoordinated clothes or find us making funny squinting faces, no need to stare…that’s just how we roll.

F – falling down
We are professionals at falling. It’s our specialty. We can fall up a flight of stairs, getting out of bed, and even on flat surfaces. If there was an Olympic sport for falling, we would be gold medal winners for sure.

G – good days and bad days
We don’t plan them…they just happen. Some days are good, some are bad and others are downright terrible. That doesn’t change over the years so if you ask if we are feeling better we don’t know how to respond. How we feel can change from day to day, hour to hour and minute to minute. Feeling better? Compared to what? Yesterday? This morning? Ten minutes ago?

H – heat sensitivity
Trips to the beach on a hot summer day, time in a hot tub or sauna, or even blowdrying our hair causes our symptoms to worsen. Air conditioning is a must. We are thankful for its inventor and would give him an award if we could.

I – IV steroids
Oh, the dreaded round of IV meds. Most of the time they help to lessen the inflammation in our brain and spine, but they create such terrible insomnia while we are on them that we may end up scrubbing the floors, power washing the house, detailing the car and painting the basement. Just don’t look at us the wrong way because they also cause terrible mood swings and have the potential of turning us into the Incredible Hulk.

J – jitters
We make a great omelet and can whip those eggs to perfection with our hand tremors. If only we didn’t keep dropping the whisk in the process.

K – krazy mixed up words
Toss our vocabulary into a blender and let the words get chopped to bits. Now dump them out and try to form a sentence or even a word. At times that’s about how easy it is for us to find our words.

L – laughing through the tears
We cry and cry often (most of the time you don’t even know it), but we laugh too and many times you will find us laughing through the tears. That’s not a sign of weakness. Our tears are just some of our strength leaking out. But don’t worry, give us a hug, spend some time with us or help us out when we need it…that’s all we need to be replenished.

M – memory problems
Sometimes it’s hard to remember schedules, appointments, names and even what someone said 5 minutes ago. Thoughts get lost more than our car keys. If only we had a “clapper” to help us find them.

N – numbness
Many parts of our body go numb much like when someone crosses their legs and their foot falls asleep. Oddly enough, we feel pain through the numbness. If only we could get them to wake up. We would gladly offer them some caffeine or an energy drink if it would help.

O – oops, oh well
Asking us to catch something when you throw it to us, and us actually catching it…now that would be something to cheer about. See, we get excited over the little things.

P – pain and more pain
Our pain isn’t because we hit our thumb with a hammer. At least that kind of pain you could see. No, our pain shifts and changes throughout the day and at times can become unbearable. So much so that even wearing socks or covering up with a sheet in the bed hurts.

Q – quiet please
Loud noises can be super annoying and seem to become amplified in our heads, so if you see us sitting in the quiet…we like that. Loud parties, restaurants and get togethers are taken in moderation so we don’t overwhelm our nervous system.

R – relapses happen
It’s just a part of life with MS…it’s called a progressive disease for a reason. It may take years for a relapse to happen or only months…though we pray for it to be years.

S – swallowing difficulties
It’s amazing how many muscles and nerves coordinate to do something as simple as eating. One nerve out of whack and we could swallow wrong. It takes concentration and effort to chew and swallow. More than most people realize.

T – tingling
Pins and needles is what we call it and they don’t go away no matter how much we try to massage that area of our body. It’s something we learn to live with and try to ignore. But ignoring that kind of thing is about as easy as ignoring a spider crawling across your big toe.

U – UTI
No, that doesn’t stand for Under The Influence although we very well could be with all the meds we take. Our bladder causes us difficulties. It’s not something we like to talk about, but it is a reality of what we have to deal with. So when we say we have to go to the bathroom, don’t stop us. We may run you over in order to get there in time.

V – vertigo
We don’t need to buy a ticket for an ocean cruise, we have one in our head every day. If only we could get a few Hawaiian shirts, drinks with little umbrellas in them and an all you can eat bar to make it feel more festive.

W – wheels, canes and braces
Oh the fun we get to have pimping out our walkers, wheelchairs, canes and braces. Now if someone could invent a zapper that we could use on people when they are rude to us because of our disabled parking tags or slow moving we’d be in business.

X – X-rays and MRIs
The rat-tat-tat noise of an MRI machine can be slept through. We know that from experience. Our medical charts are filled with images of our insides. I guess you could call us Super Models…we are so photogenic.

Y – yawn, yawn, yawn
We have a constant yawn from the moment we wake up until the time we go to bed. Being able to wake up rested is a fairy tale from a land far, far away that no one has found yet. It must be around the corner from Neverland or next to the pot of gold at the end of the rainbow.

Z – zings down the spine
If you want to know what it feels like to stick your finger in a light socket, just ask. Looking down at our toes…zing, there it goes. A lightning bolt down the back of the neck and all the way to our toes. Maybe that’s what helps to light up the light bulb over our head when we get a bright idea.

Why I wear mismatched socks

My walking only happens now each morning in therapy when I have a gait belt secured around my waist and rails to hold on to. My shoe choices have become limited due to the fact that I wear AFO (ankle-foot orthosis) braces to support my feet as I attempt to walk. One on each leg/foot.  Because my shoe choices are limited, I get creative with the socks I wear.

I have brightly colored socks, striped ones, polka dotted ones, and some with weird patterns. I even have those crazy toe sock. Of course, since I don’t feel my toes, the toe part of the toe socks don’t always stay in place, but regardless, I wear them. I think my sock choices are so mixed up because it makes me feel rebellious. People see my feet and they know you don’t mess with a girl who’s got both pickles and Cookie Monster on their feet at the same time.

My sock collection grows every time I visit the store. I guess you could say I’m a sock hoarder…well, not really, but you have to admit that does sound kind of cool. I don’t think I’ve ever met a sock hoarder before so I’m not sure what one would look like, but if the trend could be started, I’m starting it.

The good thing about having so many socks is that I can mix and match them when the pairs get separated from one another. I’m still not sure where they disappear to, but they have this strange ability to run away. I think they are running away from multiple sclerosis. I would if I could run.

But no matter how much I would love to leave MS behind in the dust or how much I wish it wasn’t there…the reality is that MS is a part of my life. It stinks…I know. It’s kind of like that ugly mismatched pair of socks that somehow ended up left behind all year in your gym locker covered in sweat and never making it home to the washing machine. MS stinks like that…bad!!!! Some days more than others, too.

When you are having a bad day because MS is raising a stink, know that it’s okay to cry. I cry often and I’m not ashamed to say it. Yes, this positive focused MSer cries. But being strong has nothing to do with whether someone sheds a tear or not, so don’t believe for a moment that you are weak when you cry. You are not only strong…you are MS strong. That’s a kind of strength that defies logic.

You are strong, you are brave, and you are going to make it. If you haven’t figured it out yet, you wear odd, crazy and weird well. Be proud of the person that you are. I know I’m proud of you. Take time to cry today if you need to, then pull up your socks, go out and conquer the day. You can do this!

My AFO brace

Here fishy, fishy, fishy

I can sit and watch it rain for hours. There’s something therapeutic about it. The steady rhythm and the sound of flowing water are soothing. As a kid I would watch the drops of water on the car window trying to pick the fastest raindrop. I would challenge my brothers and sister to pick one and we would make it a contest. It made traveling fun.

I also like watching fish swimming around in a tank, in a lake or in a bowl. There have been studies on the health benefits of fish watching. I’m not sure if I can say the same for raindrop chasing, but I would imagine it’s the same. Fish watching has been found to relieve stress and anxiety, calm the mind, lower blood pressure, help to reduce the effects of chronic pain, and even enhance a person’s ability to focus…all things that someone living with multiple sclerosis would greatly benefit from.

If your day today is filled with a long list of to-do’s, demands from your boss, needs from your family, piles of work that simply can’t be put off one more day, take a little bit of time to watch some fish. If you don’t have your own fish tank at home, why not add “going to the pet store” on your list and pause to watch from there.

I actually had a Betta named Blueberry once that had an amazing personality. I loved watching him fan his fins, play hide-n-seek in his tiny cave and swim around the tank as he proudly displayed his colors. Even watching him eat was entertaining. Sometimes he would spit it out and then go chasing after it.

Maybe instead of fish, you are more a dog or cat person. There’s something just as calming about them cuddling up with you as you scratch between their ears and rub their belly. It could be that you prefer caring for horse, maybe birds, reptiles, or even hamsters. It seems all animals have the potential of making great companions, being amazing “friends” and helping in relieving stress.

I would have a zoo if I had the room for it. Does that mean I live a stress free life all the time? No, but it does make life much more enjoyable and entertaining…that’s for sure. And who does’t need some entertainment from time to time?

This morning, my entertainment was watching an ant trying to lug a broken cracker on top of its head. That was my view as I drank my morning coffee. I’ve even already laughed a few times in the process. Each time the cracker would slip off its head and he would attempt to pick it up again seemed more like watching an I Love Lucy episode. Laughter is therapeutic anyway so I’ve already had a good day.