A multiple sclerosis breakdown
It doesn’t make sense that just the basic act of taking a shower could send someone right over the edge and into a dangerous existence AND a severe depression. But in this world of multiple sclerosis, nothing makes sense.
And so it was true, in a week filled with sadness, fatigue and hard work, it was a shower that caused the ultimate breakdown of all breakdowns. Many of my fellow MS’er’s likely already accept that a shower can cause so much damage. Sometimes, just taking a shower is completely exhausting.
But for those who have no idea what I am talking about, here is how it happened.
Last week was the week I was to move from the little house I had rented for six years, initially with a guy I was crazy about and planned to spend the rest of my life with. That didn’t work out and while I have accepted this, moving from our happy home filled me with memories of the moving in we had done.
And frankly, as he was a big guy, I could have used his help with some of the heavy junk. Luckily, I have strong friends.
But the memories were constant. Knowing about the move, I had done my best to plan out my energy levels for each day of the days leading up to the big day. With MS you plan and plan and sometimes that helps.
But not usually.
Then I learned that a dear friend from my past died unexpectedly after a car accident. I had gotten close to this friend in another life, another career way before multiple sclerosis. Grief combined with even more memories, zapping much of my crucial energy.
This loss was accompanied by the re-appearance of another old friend who had bailed after the MS diagnosis. I was an emotional, stressful wreck.
But there was moving to be done and so I did my best to rest and, well, move.
My friend’s wake was to be held on the day of the move in a town 2.5 hours away from me. There was no way I could make it.
I was pleased to learn that there would be a service for her the following morning in a town only 1.5 hours away from me. I was determined to make that. In order to attend, I would need to be completely out of the old place on move day. That was not in the initial planning but was still possible.
While the friendly movers moved the big stuff, I cleaned the old place. We also took lots of breaks to chat about crucially important things like hockey and who we knew in common.
Note to future movers- don’t chat with the moving guys. All these fun little conversations added to an increase in the cost of the move. While hockey conversations cheered me up, at $125 an hour, they weren’t cheap.
Somehow my MS brain had been with it enough to place the things I would need immediately in a well marked box.
After the movers left, I talked my mom into taking me out to lunch.
After lunch, I was back at the old place vacuuming left over dust bunnies.
Then on to the new, where I pulled out things I would need to go to the service the next day. Friends called, one an electrician. They were on their way to help set up my computer and cable. They arrived and put some things together.
When they left it was 8PM and I was grateful at all that had been accomplished. I was exhausted and sad, but calm that I was in the new place and done with the old. I could crawl into bed after my shower and catch up on enough sleep so that I could make my friend’s service.
I made my bed with the washed sheets, undressed and headed to the shower. It was there that I discovered I had no hot water.
Years ago, this would have been nothing but an annoyance. But since MS started taking over various parts of my nerve endings, a cold shower is incredibly painful. It feels like you are standing under a thousand sharp daggers as they violently pelt you. I have been forced to try a cold shower a couple of times and in each, the pain was so bad, I couldn’t breathe. It was all I could do to escape the painful spray by climbing out of the tub…
I called my landlord but couldn’t reach him. I called the gas company but they were closed. When you have MS and are this fatigued and this stressed, you are also no longer able to make decisions as they overwhelm and devour you.
Should I just crawl into my clean bed all dirty, dusty, sticky and sweaty? When would I have time to wash the sheets again? And in the new place I have to pay to do laundry, I can’t afford to wash them again. Plus, there is no way I can go to a service without a shower and I have to leave so early in the morning, it is unlikely the problem will be fixed by then.
I called my mom to complain and it was decided that I would shower and sleep at her house. But that decision lead to several others that seemed impossible to make. What to take to my mom’s? Where are the clothes I planned to wear? What about jewelry? What about shoes? What about my toothbrush?
In frustrating tears, I packed a bag but it took 45 minutes to be sure I had everything. In the car, I realized I hadn’t had dinner and was hungry. I stopped at a convenience store but there too, was an overwhelming decision.
Should I get something for a real dinner? Should I try to find something at least partly healthy? Maybe I should go to the fast food restaurant on my way to my mom’s? Each question lead to more frustration as I finally grabbed a bag of Combos and a bottle of water.
Leaving the store, my landlord called. The hot water problem was a simple switch he forgot to turn on. I could barely talk to him as this lead to more questions and decisions. Should I go back home and try again? How long does it take for the water to heat up? But what about my mom, who had already made up the guest bed for me?
I couldn’t think and on some sort of auto-pilot, got to my mom’s, safely luckily. Still not totally with it, I actually broke her shower nozzle; an easy fix but one that was beyond me at that time.
I fell into her spare bed only to realize that I had set my alarm in the new apartment for super early so that I would get up in time for the long drive. Now my new neighbors would hate me as the alarm would continuously ring all morning.
With that knowledge, and the fact that the bed in my mom’s guestroom was super uncomfortable and my brain was frayed, there was no sleep. Painful thoughts of loss, grief, ex-boyfriends, old friends, new neighbors that would hate me already for waking them up, raged. In addition, of course, to the all over body aches that had ramped up as well.
At one point, my bladder began to act up. When I tried to leave the room to use the bathroom, I couldn’t open the door. In my exhaustion I had locked myself in the spare bedroom.
It was 4AM. Did I yell to my mom and wake her up and anger her neighbors? I laid down and tried to ignore my bladder but that only made it pressure me more.
I went back to the door only to find nothing wrong with it. The door opened like a door is supposed to. In the bathroom I dropped the soap and tripped over the bare floor, three times.
The realization and the flood of tears hit at the same time. I would not be able to go to the service for my friend. It was not safe for me to be on the road. It was not safe for me to do much of anything until I got some serious rest.
I had tried, planned and done all I could, but I would not be able to say goodbye with other friends and family. And all because of MS and a minor mistake made by my kindly new landlord.
This, my friends, is one of the ways that MS sucks. No matter what you do, it has its own agenda. And often, something routine causes MS to blow up and it makes no sense to others and breaks you down. Try telling people that you missed a dear friend’s funeral service because you didn’t have hot water the night before…
But here is why MS’er’s rule.
We are used to the above even when we are not used to it. We can bounce back.
We can find our own way to say goodbye if we have to. We can get past the frustration when the one thing we need isn’t in the box you know you packed it in or when the cable and internet aren’t working the day after friends set them up for you and they worked just fine then.
We can re-group when MS sucks.
Just as long as we can get some good rest.
And a nice hot shower…..
RIP DB You are deeply missed.