Guilty as Charged

I tend to be a rule follower and a planner.  I obey authority figures. I respect laws. I’m the annoying person who reads all the directions, twice.  I look at maps before heading somewhere new. I lay out my clothes the night before and meal plan at least three days ahead.  In other words, negative consequences are generally a sufficient deterrent to keep me on the straight and narrow. Well… almost always.

Sometimes a person has an obligation to disobey, and in a calculated, planned coup, rage against an authoritarian, oppressive regime, even if the result is certain defeat.

In this spirit, I make the following confession: I, Amy Renee, did purposely, and with a full understanding of the probable outcome, defiantly spend 15 minutes weeding the landscape in the front yard on the afternoon of April 27, in the year of our Lord, 2019.

Statement of Reason: The landscape was rife with nefarious weeds that had invaded upon my property.  On the date in question, the sun was shining and the sky was a beautiful, clear blue which did beckon me forthwith to act upon the foreign invaders.

Defendant’s Previous History: The defendant has a long history, dating back 29 years, of rebellion against the established rule of law, specifically related to over exertion.

Sentence: As the indicted has, of her own admission, willfully and knowingly acted against the long-standing, acting, dictatorial powers of Multiple Sclerosis, she shall be sentenced to between three days to two weeks of excessive fatigue, difficulty walking independently, embarrassing clumsiness, and intermittent loss of bladder control.

The court would like to ask the defendant how long it will take her to learn her lesson. “Probably forever, your honor.” It certainly seems so. Court dismissed.

Shopping at Full Speed

Its bright red concentric circles beckon to land me squarely in the store. The aroma of freshly made popcorn and your choice of hot or cold, legally addictive, caffeinated beverages magically combine to infuse the air and make you feel like you want to stay a while.  It provides ample opportunities to people watch a slightly trendier, but still as strange, menagerie of folks than it’s yellow-sparked logo competitor. At any given time, it probably has more tattoo and pierced skin shoppers with hipster haircuts than any other place in town.  Home goods, furniture, clothes, undergarments, electronics, books, toys and games, food, candy, lotions and potions, a pharmacy, cleaning products, pet supplies, seasonal decor, greeting cards…pretty much everything a first world, middle class, 21st century human needs to function in our consumerist society.

I used to be able to drive myself to this shopping mecca and make my way through any aisle I chose at a leisurely pace.  When my cart was full and I had breathed in all the buttery-laced air I wanted, I could stand around in the check-out lane with no worry of how long it would take to pay, walk back to my car, and put all the bags in the backseat before finally driving home.  I could also bring the bags into the house, empty the contents, and, one by one, put them away into their respective places without care for how much energy I expended.

That was then and this is now.

It’s been well over three years since I dared to make this excursion on my own.  Like so many other things when living with MS, doing activities on my own didn’t abruptly stop.  My independence diminished similar to how individual flurries accumulate in a gently falling, long, slowly moving snowstorm.  Flake by tiny flake they collected until one day I found myself buried under the avalanche of symptoms, and shopping on my own became yet another task that fell into the “insurmountable” category.

Nowadays, my hubby chauffeurs me into town and parks in one of the handicap spots conveniently located close to the door.  He drags my wheelchair out of the trunk and together we spin our way through the store. I hate riding in those motorized wheelchairs with a basket on the front that beep every time you need to turn around or want to see something behind you.  Instead, I’ve learned the art of balancing two handbaskets on my lap, fitting everything we need into them for the week. More difficult still has been learning to compromise and change our individually-preferred shopping styles in order to make our weekly Target run pleasant for both of us.  I’ve (mostly) given up my insistence that he push me at a leisurely pace through each isle of my favorite sections. In turn, he has (mostly) stopped whizzing me so quickly that we leave two-wheeled skid marks on the tile. Sometimes we settle on him leaving me in one aisle near something I want to look at while he flies through two or three other aisles.  

This approach has fairly easily carried over to other shopping venues like the grocery store and DIY stores.  Someday I hope it will overflow into shopping for clothes at department stores, but I’m not holding my breath.  I have to admit that watching someone else shop for clothes has a limited entertainment value. However, it is kind of fun to ride through the rest of the mall so fast that you can’t tell if the blue-haired people you pass are teenagers or grandmas!

Completed!

The shower project is finally done! It took four additional weeks to finish beyond the originally estimated three, but it looks great and works even better. My favorite part is definitely the little corner seat, it’s made bathing much easier for me when I am tired. (See pictures below.)

Allegedly, the bedroom carpet install and stretching of the closet carpet is scheduled for this Thursday. Just two more major pushes to go and everything will be back to normal! I guess we will be moving everything from our bedroom to the living room Wednesday evening then turning around to move it all back in Thursday evening. Even so, the light at the end of the tunnel is gleaming brightly. It will feel good to be able to use our closet again, too. We will never again take the small, convenient creature comforts of home for granted.

The fixtures were in about a week and a half before the door and window glass were installed. It was a long wait!
The fixtures are an easy reach from the seat.
The door and window were the final pieces of the puzzle.
The window adds some extra light and some bonus space on the sill.
The inaugural shower was wonderful!

Freedom, My Old Friend!

Crushed on the couch because I got dressed. My legs are telephone poles, it’s going to take a Mack-Truck to move them. Each arm is a 500 lb bar-bell. The remote is just a couple inches away. My brain keeps saying “reach out and get it” but nothing happens. I can’t sit up, I can’t even raise my head. It takes all my energy to blink my eyes. My mouth is open, too slack to close and it takes all my concentration to muster enough energy to swallow. One hour down, now three. I can hear. I can see. I know I am breathing. I can’t feed myself, maybe in the next hour. My chin itches but I don’t care, I’m too tired to scratch it. It’s four hours now. I think I can move my hands. Yes, but my fingers aren’t strong enough to push the buttons on the remote. Maybe 30 more minutes will do the trick. It was all noise before but now I can make out the words from the music playing on TV. I like this song, I don’t need to change the channel. Todd pulls me up so I can sit. Easy does it. Just enough energy to feed myself. The drink is too heavy to lift, but I can sip through a straw. I have to lie back down to rest. Two more hours pass but at least I can follow the plot of the show Todd’s watching.

MS Fatigue is not the same as being tired. You are tired when you expend a lot of energy, like overworking in the garden, or when you don’t get enough sleep, such as pulling an all-night study session before a test. MS Fatigue has nothing to do with sleep or overwork, it is present no matter what, and it is so oppressive no amount of will-power or positive thinking exerts any difference over it. It takes you and holds you prisoner in a nearly unresponsive stupor, virtually catatonic. Sometimes the excessive, paralyzing, worst form of fatigue enters and exits daily. Other times, it comes and goes like a distant relative you only see on holidays or special occasions. I hate it. I don’t have the vocabulary to explain it. I dread every time it visits. It doesn’t wait for invitations, it just shows up and demands an audience. I’ve been under it’s stern, cruel rod of chastisement more times than I can count. It doesn’t get any easier, BUT I know it won’t last forever. It will eventually ease and, though it may seem reluctant at first, let go of it’s vise-gripping, soul sucking, strangle of me and let me breath the air of freedom again.

(Inhale) Freedom, (exhale) my old friend!

MS Walk 2019 is in the Books

It turned out to be a BEAUTIFUL day to take a walk, a very special kind of walk. There was a huge community turn out for the MS Walk, full of friendships both old and new. Several friends from church got together and created a team, Amy’s Axons, in my honor without me even knowing about it! Owing to such a kind and loving act, the walk this year was extra meaningful to me.

Highlights included – the Central High School Kilties marching us out as the walk began, Hurts Donuts, Einstein Bagels, lunch catered by Los Cabos, a variety of vendors raising money for MS, and a live band, just to name a few.

It’s always encouraging to see others living with MS supported by friends and family on their teams. I had the opportunity to meet a couple of people who also have MS. Both of them, like me, stressed how much they relied on their friends and family support in order to live with this disease. This fact can never be emphasized enough, without the help and kindness of others I would be unable to live on my own.

Many advances have been made in recent years in the quest to understand and treat MS. A recent report revealed that the number of people living with MS in the USA was around a million, nearly twice what had originally been thought. Now, more than ever, we need to find a cure!

Tales of the DMV

Getting my Real-ID has been Real-HARD for me. I had to make five trips to the DMV within a 24-hour period and still have to go back again. I saw several familiar faces each time I returned, people who, like me, either hadn’t brought the right combination of paperwork or had to come back because the statewide server broke down.

Both days found the place stuffed full of Americans across the gamete of lifestyles and social classes all trapped together in a small area for about an hour. I distinctly remember a man with no teeth and a Disney character tank top sitting beside a businessman in pressed trousers and a starched shirt; a “What’s wrong with putting America first?” T-shirt wearing man next to a couple of Polish speaking ladies trying to get car tags; one parent with two feral children running and screaming in and out of the rows of chairs asking questions about school to a parent whose children were quietly sitting beside her; and a crusty, bushy-bearded man reeking of stale, cheap cigarettes squashed up against a lady with a designer track suit, perfect nails and hair, a bit too much perfume, and a lot too much make-up. These characters, along with your average Joes and Janes, made up the rotating, but constant of 20 or so folks waiting their turn. Despite the obvious, visible differences, one could tell we all had the same desperate hope, that we had brought enough pieces of paperwork in the correct combination to get us out of there!

The five ladies who worked behind the counter were the quintessential DMV employees you see in movies or on TV. One was very pleasant but must not have been working there very long because she had to ask her co-workers questions for virtually every transaction she made. One was peppy and seemed to get through two times as many people as all the others combined. One was very matter-of-fact, a little cold, and didn’t seem too worried about customer care. One was earnest and nice, but was flustered easily and didn’t look to have many tools in the tool shed, if you know what I mean. And then there was the maniacal one who I honestly think took secret joy in telling people they didn’t have the correct paperwork and they would have to come back. She “helped” me on my third visit by telling me I would need to bring in a copy of my marriage license, emphasis on copy. When I came back with my license in hand and had spent another 45 minutes waiting my turn, I was called to the cubicle of the pleasant lady who probably hadn’t been working there too long. I gave her my paperwork and when she came to the marriage license, Maniacal Lady took it upon herself to, without being asked, lean over from her own cubicle into that of the person who was helping me. Maniacal Lady took a cursory glance at the copy and, with a smile on her face, said it didn’t look like it had the proper seal and that I would have to order another one from the State Recorder’s office in Jefferson City (our state’s capital). As she said this she looked me straight in the eye, raised her eyebrows, and shook her head as if to say, “I have the power to make your life miserable and I like nothing more than watching all the hope vanish from your eyes.” (Did I mention this was my fourth trip?) Because Missouri has an extension to become compliant for Real-ID until October 2020, and because I was more frustrated than I can remember being in a very long while, I opted to just get a regular driver’s license and come back another day to try again.

I actually cried on the way home–I couldn’t help it.  I felt like I was seven years old and had been wrongly blamed for something I didn’t do, but couldn’t find the words to explain the truth. I’m sure the deepening fatigue I was now feeling didn’t help. The only thing that could come out was tears.

Each time I had gone to the DMV a different person helped me and told me something different than the previous one had said. I checked the list of requirements on the state website and thought I had all the pieces it listed as necessary. After that visit, the fourth one, I finally called the county recorder’s office and learned I had brought in all the correct paperwork and that I wasn’t the only casualty of the local DMV. Apparently there has been ongoing confusion among the DMV staff about what qualifies as an “approved copy” of a marriage license despite the county recorder going over in person to train them.

Armed with this new information, I found myself getting back in my car, limping myself up to the counter without bothering to take a number, and sharing this with Nice Lady who had helped me before Maniacal Lady butted in. Living up to her moniker, Nice Lady was very kind, didn’t scold me for butting in line, and set about trying to sort it out for me. She went over to tell Maniacal Lady what I had discovered, but Maniacal Lady didn’t believe it. Eventually, a call was placed by Nice Lady to Jefferson City for a final verdict, and…I was right! Maniacal lady was WRONG! Her face dropped when she found out and for just a brief moment I thought I had won the day and could get my Real-ID completed. I was wrong. Maniacal Lady rallied quickly, fixed her eyes hard on me, and with an all too familiar look, raised her eyebrows and shook her head, as she leveled her last words to me, “You still have to wait 10 days before coming back to get your Real-ID license because you got a regular license earlier today.”

I hope I get Maniacal Lady when I go back. I plan to smile my biggest smile and politely say, “We meet again.”

Worth the Wait…

Being on hold for an extended time is a trial of patience, at least it is for me. Several things in life are currently on hold for us at present, but the biggest two revolve around fixer uppers. The largest of these continues to be our shower remodel. What was to have been “about a three week job” has, as of today, stretched into it’s fifth week. It’s not really anyone’s fault and I know this is typically how these things work out. However, living like we’re camping is no longer endearing and all the dust and muck makes our home feel less comfy. Word is that the project will be wrapped up before the end of next week. The guys are working on the trim today and putting in the shower fixtures. The last piece of the puzzle should be the glass for the door and window which had to be special ordered. Feel free to browse the latest round of shower pictures at the end of the post.

In addition to the shower, we are planning to get new carpet for the master bedroom. We picked it out this weekend and are excited about getting it. Of course, we don’t want it installed until all the shower mess is finished. When they come to install it they are also going to stretch the carpet in the master closet which has somehow developed a weird lump. So, we don’t want to move everything back into the closet until they come to do the carpet. Naturally, they won’t be able to get the carpet laid for another couple of weeks.

I think I’ll just be off to sing some camp songs and eat s’mores.

The slow progression continues: