This Is MS

I decided to do a "day in the life" post. Yesterday was a completely typical day, so it will be a good one to write up.

I slept ok, just woke up three times or so. After at least eight hours of sleep, I got up at 7:15 AM, tired already.

Although I planned to leave the house by 8:15, it took me a long time to get ready. That was because I kept forgetting what to do next. And I needed to take a couple of breaks, because I was so tired. Yes, showering (lukewarm, due to my heat intolerance), drying my hair, and putting on minimal makeup wears me out. Before MS, this routine took 30 minutes. Now I am lucky to get it done in an hour.

Holding onto the rail with one hand and firmly pressing my other hand into the wall, I slowly went down the stairs. My roommate made me breakfast, since I was running late. That happens pretty much every day. As I ate my toast and took my medicine (12 pills), I realized that I needed to use the bathroom. When I need to go, sometimes I need to go NOW and cannot wait. This was one of those times. Unfortunately, I also have a problem called hesitancy, where even though I have to go, I cannot. Wait... wait... wait... Don't want this to hit in the car... Finally! I again went slowly and carefully down the stairs and left the house at 8:40.

I got to work just before 9:00 and parked in a handicapped spot. A coworker who does not like me very much was at the door when I came in. Great. My legs were already tired from walking to the building, but I forced myself to continue on, dragging my wheeled cart behind me. A coworker/friend, who noticed my difficulty lifting my laptop bag, bought the cart for me a few months ago. So sweet.

I trudged to the back of the building. As I pushed open the doors to the area where I work, I was greeted with stale, humid, warm air. That was how it was last week, so I started worrying about how I would get through the day if it continued that way. I hoped it was because the system was just getting started.

At 9:10, I went into the general education classroom to guide my special ed students through their first day. The temperature continued to rise, and my energy level continued to drop. I felt dizzy and fatigued. I was having trouble thinking and paying attention.

By 10:20, when we dismissed the students to another class and I left that room, I was really worried about how the day was going to go. I went up to the assistant in a nearby room and asked, half-jokingly, "Who do I need to bribe to get some AC around here?" She looked confused. She said, "It's on, can't you feel it here in my area?" I could, now that she mentioned it. I told her the AC was not on in the other room. She told me that was because that teacher always turns it off, because she likes it hot.

I was so confused by that point that I was not able to respond to her. My brain was having difficulty processing information. My body was so fatigued that I needed to sit down. I went into my office and plopped down at my desk. Despite having the AC on high, it was 73 degrees--my borderline for having symptoms worsen. And that is when I am just sitting around; if I am moving and working physically, I need it more like 70. The lower, the better.

I overheard the assistant talk to that teacher when the teacher returned a few minutes later. I went out to where they were. The teacher said that the AC certainly was on. She was lying. The assistant went over to the AC controls and said that it was currently 75 degrees and the AC was on hold. The teacher said that she must have put it on hold last winter, because it was too cold in there. Um, right. I said that today it was too hot, that I hate sweating while I am at work, and that all the other adults in the room were too hot. (There had been five of us, and everyone had complained about the heat except her--but I was the only one who was physically getting sick from it.) The AC was turned on.

I had to use the bathroom twice that morning, which involved walking to another end of the school. It almost did not seem worth it. Adult diapers are looking better every day.

At some point, a coworker/friend shared trail mix with me. I was so grateful. If I had been thinking, I would have remembered that I had brought two snacks from home.

By noon I was ready to cry from fatigue--when I get overtired, I tend to cry. But I held in the tears. Just after noon, I had another break. By this time, cooler air was coming out of my AC unit. I took more medicine (2 pills). I dragged myself down to the kitchen to warm up my food, dragged myself back to my office at the back of the building. I ate lunch with some coworkers. I had to work to keep up with conversation. My brain was still not working well. I had to work to get my fork to my mouth. My body was still not working well. I made sure to smile and chat like usual, which took energy that I really could not spare.

At 12:45, I had a meeting with my boss and the coworkers who does not care for me. By this time my brain had recovered, and I had enough energy to move from my desk to another area of the room to meet with them. My boss was being a bully to a coworker, as usual. A few times I was able to think of a response to defend that coworker, but usually my boss was deliberately obtuse. Whatever.

At 1:30, I went back into that classroom where the AC had been off... to find it off again. The temperature was rising again. I wanted to lie down so badly. Within 10 minutes, my head felt so heavy. I stayed in there until 2:30, when I took kids into my room. The whole hour in that room was torture, because I felt so sick. I felt like I had a flu. Heavy head, heavy limbs, fatigued, hard to think and make decisions.

From 2:30-3:30, I worked with several multiply handicapped children. At least it was in my room, where the air was on. It still said 73 degrees, which is where the unit is set. I need to ask someone how to get it set lower (it is locked, unlike the one is the crazy teacher's room), but I am always either too tired or forgetful to get that done. Using two languages, I worked with my disabled students, managing behavior (one child sat in the thinking chair twice for hitting me--although to be fair, he was calling me "mom," so I don't think it was personal) and trying to keep their attention using big facial expressions and body movements.

At 3:45, the kids were gone and I was so ready to leave. But I was exhausted. My left leg was doing its burning thing, and my right big toe was going numb. My left foot felt like a combination between pins/needles and electric shocks. My right arm was weak. The tips of my fingers were a bit numb.

I dragged myself to the bathroom again. I lost my balance a couple of times in the bathroom--not falling over, just balance checks. I washed my hands in cold water, because I could not handle the thought of heat on my body.

The striking thing about all of this is that only one person at work knows about my MS. No one else has the faintest notion that something is wrong with me. Because don't I look so good?

I went back to my room and packed my things. A colleague caught me and started talking. I love her and wanted to talk to her, but I knew that I needed to go home.

But I did not want to be rude, so I stayed and talked. I ate a snack while we talked, trying to keep my energy up. Several times I said that I needed to leave, but we kept talking. Work stuff. Problems to work out. That only made me more tired. I was holding back tears. When we finished talking, I was not sure I could leave. My legs were not cooperating. Even sitting up was hard. Weakness and fatigued had combined, multiplied. I pushed myself up with my hands and used all of my energy to put one foot in front of the other.

Pulling my cart back out of the building at 4:45, it felt much heavier than it had in the morning. So did my legs! I did not feel safe to drive, but what could I do? Kids seem to think that teachers sleep at the school, which seemed like a great idea at that moment. But all I wanted to do was get home and flop on the couch.

I got into my hot car and jacked the AC up full blast. I took more medicine (4 pills). As I fought traffic to get onto the highway, I had to use all of my brain power to pay attention to the road. It was exhausting. I actually had to think: "Green light, that means you can go through the intersection. There is a car with red lights on, OH, slow down. Other cars, they might turn out." Intersections were the worst. Too much stimuli to process.

On the highway, I was able to cruise and think. All I could think was, "How can I do this?" I began to pray, pouring out my heart and my tears to Heavenly Father. I asked for help getting through work and life. I explained that I needed it cool or to feel like it was cool. I was worried about the extra layer of clothing I wear, which only makes my heat intolerance worse. Then I guess I forgot I was praying. I listened to audiobook scriptures and focused on the cool of the AC.

I got home at 5:15. I slowly pushed myself up the walk to my home. Opening the door, I saw my roommate sprawled out on the couch, with bills piled up at her feet. My bills, which arrived weeks ago. I knelt near her head to plug in my laptop and laid right down on the floor. I did not have the energy to sign to her and ask her to make room for me. I could not think of the words to say. So I laid.

After a minute, she told me to get up and sit on the couch, and gosh, why didn't I just move the bills? I had not had the energy or the problem-solving skills. And I did not have the energy or the words to explain that to her.

She sat up and moved the bills, gesturing for me to sit with her. But once I was down, I could not get up. I just laid there. I could not think of words to say. "I'm too tired to get up." I could not think of that. With one hand, I signed "Tired."

But I did not sign it clearly enough (and I was lying on my stomach at the time), so she did not understand me.

After a few tries, I was able to push myself up onto my hands and knees and crawl onto the couch. I laid my head on her lap and cried. She was so sweet, trying to make me feel better. She listened to the few thoughts I could get out. She brought me ice pops. I finally asked her about her day, because it is easier to let someone else talk than to try to formulate sentences when I am tired. After an hour or so, I was strong enough to make a phone call to order pizza. I took more medicine (9 pills)

I laid on the couch for the rest of the evening. For at least two hours, I longed to die. I felt so awful, with my heavy body, my fatigue, pain, feeling like my head would fall off, thoughts I could not keep in my head long enough to complete. The idea of another day like that... and another... and another... A whole new school year... It was too much.

When I had enough strength to pay attention, I watched TV. When I had enough strength to sit up, I wrote last night's blog post.

Around 8:45, I was falling asleep, and my roommate suggested going to bed. I did not have the ability to think about whether I wanted to go to bed or not (or to think of that myself when I was tired), so I did as I was told. After taking medicine (5 pills).

It took me a long time to get ready for bed, because I kept forgetting what to do. Something with this green thing... right, floss, it's for my teeth. I usually stand at the sink, but what do I do next? It took over half an hour to wash my face, put on face cream, floss and brush my teeth, and use the bathroom. I was overtired again, and I cried when I got into bed. Lights out to prepare for another day of the same.