Although I had a bad reaction to Nuvigil last year, I got permission from my neurologist to try half a pill today. My fatigue is just out of control. Nuvigil is basically legal speed. Kind of like Ritalin, I guess. Well, I did not have a bad reaction to Nuvigil today. I am not sure it even worked. Maybe I should check the expiration date. It is a sample pack that nutty Dr. Gabby gave me a year ago.
I had a so-so morning. Not good but not terrible. However, I was sitting down giving tests most of the morning, and I was in my own classroom.
I got worse toward the end of the morning and continued to decline all afternoon. At one point I stood and talked to a colleague for about 10 minutes, and I seriously felt like I might pass out. I was dizzy, had occasional waves vertigo, even some nausea in the afternoon. I have rarely had problems with nausea with my MS fatigue, but I know others do. That was not fun. But vertigo is worse.
My left foot is worse today.
When I had to go up to the office toward the end of the day and meet with my boss, I guess I used up all of my energy to walk normally and explain things to her. After that, I was pretty well spent. It is hard to describe how poorly I felt. Feel. I have only been home for 30 minutes, so I am not even close to recovering. Still feels like my head might fall off.
I am so frustrated. There are many things I enjoy and want to do, but I cannot do them. Being sick every day is horrible. MS fatigue is horrible. I had no idea a body could feel this way--and I have had gallbladder attacks and kidney stones. MS fatigue is worse. At least the gallbladder attack eventually ends, and the kidney stone eventually passes. This MS thing is not going away, and it is getting worse, not better.
We work every day to eat, be clothed, buy things we want, have a home, etc. It is worth spending many hours each week doing something we do not want to do (generally speaking) in order to do things you want to do sometimes. On the weekends. In the evenings. Everyone has to decide how much "not fun" is worth "fun." Some people want to work just enough to have a modest home and stay mostly out of debt. Others are willing to work 80-hour weeks to have a nicer house or drive a fancy car. The cost-benefit analysis is a personal thing.
I wonder whether it is worth living this way, only feeling alright occasionally. And rarely, so rarely, feeling good. If I thought this is it, that life ends with death, I would think that it is probably worth it. Maybe. But I already have my calling for the spirit world, and it sounds great--a whole lot better than what I have going on here.
I am not suicidal; I just want to die.
Thursday, August 30, 2012
Wednesday, August 29, 2012
Relief!
Although I had another hard day, one thing made it a bit easier to bear. When I got there, my favorite coworker, a great friend, made a beeline for me and said she had solved my heat problem. I asked how, of course. We had spent a lot of time discussing that problem on Monday, and I really was not sure what to do. Although that teacher is a nice person, she seemed to have strong feelings about keeping her classroom hot.
My friend said that she had sat down with that teacher and said, "Someone on our team has heat intolerance. When she is hot, she becomes physically sick." The teacher immediately said that people can turn the temperature down in her room any time.
What a relief! I know that Heavenly Father answered my prayer through my friend. Although my day was still insanely difficult, and I feel just awful, keeping the temperature reasonable helped my cognition and emotions. I did an awesome job troubleshooting a little darling's hearing device (got it working!) and teaching my sweet children.
My friend said that she had sat down with that teacher and said, "Someone on our team has heat intolerance. When she is hot, she becomes physically sick." The teacher immediately said that people can turn the temperature down in her room any time.
What a relief! I know that Heavenly Father answered my prayer through my friend. Although my day was still insanely difficult, and I feel just awful, keeping the temperature reasonable helped my cognition and emotions. I did an awesome job troubleshooting a little darling's hearing device (got it working!) and teaching my sweet children.
Tuesday, August 28, 2012
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.
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.
Monday, August 27, 2012
What I Want You to Know
If you want to know me, you need to understand my MS. Here are some common questions about multiple sclerosis and web links to answers. Why reinvent the wheel, right?
What are the symptoms of MS? (This is not comprehensive!)
Here are some questions that should be asked...
Saturday, August 25, 2012
30 Things About My Invisible Illness You May Not Know
I got this meme from the Invisible Illness Week website. Invisible Illness Week is in September, but I found the meme this week, so I am doing it now.
1. The illness I live with is: Multiple Sclerosis
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2007 (or earlier?)
4. The biggest adjustment I’ve had to make is: Doing much less--working less, going out less, involved in church less
5. Most people assume: I am feeling good, because I look good
6. The hardest part about mornings are: Getting out of the house on time. I need breaks due to fatigue, and I often forget what I am doing due to cognitive impairment.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: My laptop (I'm not an alien)
9. The hardest part about nights are: Trying to sleep--my brain wakes me up frequently. Sometimes I wake up because the pain is bad, but most of the time it is for no apparent reason.
10. Each day I take __ pills & vitamins. 30-35 pills/vitamins, 1 intramuscular shot every week, and 1 subcutaneous shot every month. In the 24 hours surrounding my shot, I take an additional 20 or so pills--gosh, upwards of 50 pills in 24 hours! That cannot be good.
11. Regarding alternative treatments I: I am totally interested. I tend to research them and look for studies, but I will try pretty much anything. I have tried Reiki, yoga, and massage, and some of the supplements are alternative treatments. I wish I had the money to do those things enough that they would help me.
12. If I had to choose between an invisible illness or visible I would choose: Hard one! At least with a visible illness people do not expect you to do everything. But with an invisible illness, people at work do not know. I guess invisible for now.
13. Regarding working and career: I am totally stressed out, wondering when I will have to quit. People with MS work an average of eight years after the diagnosis. There is no way I will have enough money to support myself in retirement beginning seven years from now.
14. People would be surprised to know: What MS fatigue feels like. That I am in pain every minute of every day. That I worsen rapidly in temperatures above 74 degrees.
15. The hardest thing to accept about my new reality has been: That I cannot do the things I like to do or plan to do. That plans can change any minute, because I never know what I will feel like in the next hour, much less the next day.
16. Something I never thought I could do with my illness that I did was: Yoga! And physical therapy.
17. The commercials about my illness: Are practically nonexistent, but I do see online ads for people who do everything they did before, because of such-and-such medicine. Whatever! Those people are rare.
18. Something I really miss doing since I was diagnosed is: Skiing more than three turns at a time. Ski for more than 20 minutes without a long break.
19. It was really hard to have to give up: Hours at work, because I needed the money. And spending time outside during the spring/summer/fall.
20. A new hobby I have taken up since my diagnosis is: Yoga
21. If I could have one day of feeling normal again I would: Ski all day!
22. My illness has taught me: That you do not always get what you pray for, and sometimes really bad things happen even when you try to do everything right.
23. Want to know a secret? One thing people say that gets under my skin is: "You look great, you must be feeling better," and "I love it when you smile, you should do that more."
24. But I love it when people: Ask how I am doing and seem like they are ready to listen to whatever answer I give. And when people learn about MS and try to understand what I am going through.
25. My favorite motto, scripture, quote that gets me through tough times is: 3 Nephi 13: 28-30
26. When someone is diagnosed I’d like to tell them: Go to an MS specialist to manage your care, not just any neurologist. And after about a month of initial anxiety, learn everything you can about your disease. No one is going to care about your health as much as you will.
27. Something that has surprised me about living with an illness is: How unpredictable each day is.
28. The nicest thing someone did for me when I wasn’t feeling well was: Listen
29. I’m involved with Invisible Illness Week because: I have an invisible illness, and I would like people to learn about it.
30. The fact that you read this list makes me feel: Touched.
1. The illness I live with is: Multiple Sclerosis
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2007 (or earlier?)
4. The biggest adjustment I’ve had to make is: Doing much less--working less, going out less, involved in church less
5. Most people assume: I am feeling good, because I look good
6. The hardest part about mornings are: Getting out of the house on time. I need breaks due to fatigue, and I often forget what I am doing due to cognitive impairment.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: My laptop (I'm not an alien)
9. The hardest part about nights are: Trying to sleep--my brain wakes me up frequently. Sometimes I wake up because the pain is bad, but most of the time it is for no apparent reason.
10. Each day I take __ pills & vitamins. 30-35 pills/vitamins, 1 intramuscular shot every week, and 1 subcutaneous shot every month. In the 24 hours surrounding my shot, I take an additional 20 or so pills--gosh, upwards of 50 pills in 24 hours! That cannot be good.
11. Regarding alternative treatments I: I am totally interested. I tend to research them and look for studies, but I will try pretty much anything. I have tried Reiki, yoga, and massage, and some of the supplements are alternative treatments. I wish I had the money to do those things enough that they would help me.
12. If I had to choose between an invisible illness or visible I would choose: Hard one! At least with a visible illness people do not expect you to do everything. But with an invisible illness, people at work do not know. I guess invisible for now.
13. Regarding working and career: I am totally stressed out, wondering when I will have to quit. People with MS work an average of eight years after the diagnosis. There is no way I will have enough money to support myself in retirement beginning seven years from now.
14. People would be surprised to know: What MS fatigue feels like. That I am in pain every minute of every day. That I worsen rapidly in temperatures above 74 degrees.
15. The hardest thing to accept about my new reality has been: That I cannot do the things I like to do or plan to do. That plans can change any minute, because I never know what I will feel like in the next hour, much less the next day.
16. Something I never thought I could do with my illness that I did was: Yoga! And physical therapy.
17. The commercials about my illness: Are practically nonexistent, but I do see online ads for people who do everything they did before, because of such-and-such medicine. Whatever! Those people are rare.
18. Something I really miss doing since I was diagnosed is: Skiing more than three turns at a time. Ski for more than 20 minutes without a long break.
19. It was really hard to have to give up: Hours at work, because I needed the money. And spending time outside during the spring/summer/fall.
20. A new hobby I have taken up since my diagnosis is: Yoga
21. If I could have one day of feeling normal again I would: Ski all day!
22. My illness has taught me: That you do not always get what you pray for, and sometimes really bad things happen even when you try to do everything right.
23. Want to know a secret? One thing people say that gets under my skin is: "You look great, you must be feeling better," and "I love it when you smile, you should do that more."
24. But I love it when people: Ask how I am doing and seem like they are ready to listen to whatever answer I give. And when people learn about MS and try to understand what I am going through.
25. My favorite motto, scripture, quote that gets me through tough times is: 3 Nephi 13: 28-30
And why take ye thought for raiment? Consider the alilies of the field how they grow; they toil not, neither do they spin;
And yet I say unto you, that even Solomon, in all his glory, was not arrayed like one of these.
Wherefore, if God so clothe the grass of the field, which today is, and tomorrow is cast into the oven, even so will he clothe you, if ye are not of little faith.
26. When someone is diagnosed I’d like to tell them: Go to an MS specialist to manage your care, not just any neurologist. And after about a month of initial anxiety, learn everything you can about your disease. No one is going to care about your health as much as you will.
27. Something that has surprised me about living with an illness is: How unpredictable each day is.
28. The nicest thing someone did for me when I wasn’t feeling well was: Listen
29. I’m involved with Invisible Illness Week because: I have an invisible illness, and I would like people to learn about it.
30. The fact that you read this list makes me feel: Touched.
Just For Old Time's Sake
Just for old time's sake, I will do my numerical ratings of symptoms. This was so helpful to me in the past, with increasing awareness of my body (a PT goal), noticing trends, and gaining confidence that new problems were real.
It is only 1:00 in the afternoon, and it is the weekend (always better), but I will go ahead and rate how I am feeling so far.
Sensory:
-Pins and needles: 1
-Burning skin: 7
-Electric pain: 4
-Nerve pain: 5
-Numbness: 2 (mostly feet)
-Vision: 1
-Hearing: 0 (my tinnitus got worse again with my last relapse, but it went away at the same time that I had improvements with pain, sleeping, swallowing, and spasticity)
Motor:
-Walking: 1
-Sore muscles: 4
-Spasticity: 3
-Weak muscles: 4
-Endurance: 2
-Fine motor: 1
Cognitive:
-Processing: 3
-Memory: 3
-Attention: 1
-Confusion: 0
Other:
-Fatigue: 6
-Balance: 2
-Proprioception: 2
-Sleep: 3 (woke up a lot)
-Bladder: 0
-Swallowing: 0
Emotions: Kind of frustrated, wanting to enjoy my day but feeling like I might not be able to. Too tired. But happy that it is the weekend, so I do not have to go to work. Glad that I had a therapy session today. Not too stressed, not anxious. Some fear related to my MS at the back of my mind.
It is only 1:00 in the afternoon, and it is the weekend (always better), but I will go ahead and rate how I am feeling so far.
Sensory:
-Pins and needles: 1
-Burning skin: 7
-Electric pain: 4
-Nerve pain: 5
-Numbness: 2 (mostly feet)
-Vision: 1
-Hearing: 0 (my tinnitus got worse again with my last relapse, but it went away at the same time that I had improvements with pain, sleeping, swallowing, and spasticity)
Motor:
-Walking: 1
-Sore muscles: 4
-Spasticity: 3
-Weak muscles: 4
-Endurance: 2
-Fine motor: 1
Cognitive:
-Processing: 3
-Memory: 3
-Attention: 1
-Confusion: 0
Other:
-Fatigue: 6
-Balance: 2
-Proprioception: 2
-Sleep: 3 (woke up a lot)
-Bladder: 0
-Swallowing: 0
Emotions: Kind of frustrated, wanting to enjoy my day but feeling like I might not be able to. Too tired. But happy that it is the weekend, so I do not have to go to work. Glad that I had a therapy session today. Not too stressed, not anxious. Some fear related to my MS at the back of my mind.
Icy Waters
When I was at the beach, I could not help but think about the waves analogy. The waves analogy was okay but never perfect, because it seems like no matter how smoothly I dive, the waves still churn me. I keep getting pounded.
After a couple of days, I had a different thought. Dealing with this disease is something like swimming in frigid waters.
The water was so cold the first few days I was there! It took so long to get used to it. I crept in, ankles, shins, knees.... When I finally got used to it, I could enjoy myself in the water. It was still cold--not as enjoyable as temperate waters--but it got better than when it first washed over my toes.
Getting in slowly helped.
Distracting myself with enjoyable activities helped--boogie boarding right away instead of waiting until I was used to it to go grab my board.
The bottom line was that getting used to the cold was hard no matter what. But giving up after only getting in up to my knees made me miss out on some enjoyment that could be had.
I have to get used to MS. It seems impossible, but people have apparently done it. Come to terms with it, accepted it as part of their lives. They say it gets better, that you can get used to the icy waters. I am not putting an expectation on myself to do this quickly, but I hope I will make peace with my MS one day soon.
Work Is the Problem, Not MS
I had a fantastic vacation last week. I spent a week at the beach, which is one of my favorite places to be. A good part of my childhood was spent on beaches, so they are home to me.
My MS settled down before my vacation began, which was great timing. I would have like for my MS to settle down during the two "vacation" weeks before that, where I was off work but mostly just hanging around the house. Oh, well. I was glad to feel better for the beach.
After a few days there, I was feeling really well rested. I had almost no pain. Not much fatigue. I thought that I must be healing really well! I did not feel like my MS held me back from anything I wanted to do, as long as I took it easy and did not try to pack a lot into a single day.
Unfortunately, I felt worse again this week. I am back to work. That was how I recognized that MS is not the problem; work is the problem.
I had the same level of ability/disability (is that cup half full or half empty?) both weeks. The difference was what I was required to do. I realized that if I were not working, I would enjoy these days and years more. That realization made me sad, because I am pretty sure I have to work. From the research I have done on disability finances, I am a lot better off working.
But I do not think I am better off emotionally if I am working. And the stress is horrible for my disease, increasing the inflammation that makes my body attack itself. Maybe I would not have so many relapses if I did not so much stress.
What kind of life to I have if I just work and lie down every day for years, until I am no longer able to work and also unable to enjoy most of what I like to do?
Any rich men out there interested in a semi-disabled wife?
My MS settled down before my vacation began, which was great timing. I would have like for my MS to settle down during the two "vacation" weeks before that, where I was off work but mostly just hanging around the house. Oh, well. I was glad to feel better for the beach.
After a few days there, I was feeling really well rested. I had almost no pain. Not much fatigue. I thought that I must be healing really well! I did not feel like my MS held me back from anything I wanted to do, as long as I took it easy and did not try to pack a lot into a single day.
Unfortunately, I felt worse again this week. I am back to work. That was how I recognized that MS is not the problem; work is the problem.
I had the same level of ability/disability (is that cup half full or half empty?) both weeks. The difference was what I was required to do. I realized that if I were not working, I would enjoy these days and years more. That realization made me sad, because I am pretty sure I have to work. From the research I have done on disability finances, I am a lot better off working.
But I do not think I am better off emotionally if I am working. And the stress is horrible for my disease, increasing the inflammation that makes my body attack itself. Maybe I would not have so many relapses if I did not so much stress.
What kind of life to I have if I just work and lie down every day for years, until I am no longer able to work and also unable to enjoy most of what I like to do?
Any rich men out there interested in a semi-disabled wife?
Sunday, August 5, 2012
Medication Reaction?
I guess I will give an update on my health.
I had to stop the steroids after one dose of 100 mg. A few hours after taking the drug, I was half asleep and suddenly jolted awake by my heart pounding. It was like nothing I have experienced.
My heart was pounding so hard that I seriously wondered if I might die. My head was spinning--vertigo, even though it was dark. I immediately suspected a medication reaction or interaction. I felt like everything was far away. And everything seemed big and small at the same time. Swollen. I do not know.
Then I remembered reading in a psychology book about panic attacks, that people think they are having a heart attack or will die. I remembered the advice to breathe through it. Just keep breathing. Wait for it to pass, because it will not continue forever.
And it did stop after a few minutes. But it happened again, three times in half an hour. Then I fell asleep. More like passed out: I had taken sleeping medicine.
I emailed my neurologist, describing the incident and saying that I thought I had had a panic attack. His response surprised me. He thought it was a medication reaction, because people do not have panic attacks when they are relaxed and almost asleep. He told me not to take the steroids for now. If I were to take them again, make sure it is in the morning.
Umm... I did not want steroids. But after I had resolved to take them, I wanted them. I expected to take the course and be done. I was disappointed stopping, because I was really hoping they would help. I considered taking them anyway. I still thought it might have just been panic attacks. But I was afraid that my doctor was right, and I might have a worse reaction and need medical attention; then my neurologist would not be able to trust me. We need to be able to trust each other.
I wonder if I got a bit better on Thursday and Friday because of the steroids? I took them Tuesday night. I do not know. MS is so unpredictable.
What I do know is that I have been sick for over a month, and I want to get better.
I had to stop the steroids after one dose of 100 mg. A few hours after taking the drug, I was half asleep and suddenly jolted awake by my heart pounding. It was like nothing I have experienced.
My heart was pounding so hard that I seriously wondered if I might die. My head was spinning--vertigo, even though it was dark. I immediately suspected a medication reaction or interaction. I felt like everything was far away. And everything seemed big and small at the same time. Swollen. I do not know.
Then I remembered reading in a psychology book about panic attacks, that people think they are having a heart attack or will die. I remembered the advice to breathe through it. Just keep breathing. Wait for it to pass, because it will not continue forever.
And it did stop after a few minutes. But it happened again, three times in half an hour. Then I fell asleep. More like passed out: I had taken sleeping medicine.
I emailed my neurologist, describing the incident and saying that I thought I had had a panic attack. His response surprised me. He thought it was a medication reaction, because people do not have panic attacks when they are relaxed and almost asleep. He told me not to take the steroids for now. If I were to take them again, make sure it is in the morning.
Umm... I did not want steroids. But after I had resolved to take them, I wanted them. I expected to take the course and be done. I was disappointed stopping, because I was really hoping they would help. I considered taking them anyway. I still thought it might have just been panic attacks. But I was afraid that my doctor was right, and I might have a worse reaction and need medical attention; then my neurologist would not be able to trust me. We need to be able to trust each other.
I wonder if I got a bit better on Thursday and Friday because of the steroids? I took them Tuesday night. I do not know. MS is so unpredictable.
What I do know is that I have been sick for over a month, and I want to get better.
When the Waves Crash
The beach is my home. I grew up going to the beach at least once a week during the summer, usually more often. My sister spent her time on the sand, perfecting her tan. I spent my time in the water.
Sometimes the waves are scary. But I always go in, even if the water is cold or the ocean is angry. I go in when the yellow flags are up. I know waves like the back of my hand.
Some waves break far out. Some break at the shore. Some break twice. Some break and release. Some break and roll. Some are regular. Some are variable.
Sometimes the water is so choppy that the waves are not discernible. The water crashes in on itself, churning sand and bits of shells into a grey, foamy mountain that churns people right along with the shells.
There are several ways to handle yourself in the ocean, to get through the waves rather than having them get through you. You choose a strategy based on the type of wave you see coming.
Obviously, it is important to be looking at the ocean. If you are looking back at the beach, you do not know what is coming at your back. Look at the ocean. Waves rise up without much warning, and you usually do not know what is coming until it is before you, but you do have a few seconds.
You can dig your toes into the sand and angle your body slightly forward. This is a good strategy for small waves or small chop.
You can jump and twirl in the wave. This is a good strategy for small/medium, regular waves. Regular waves have a distinct curl and are spaced out a little. You can enjoy them and avoid being knocked over if you jump. Giving them your back prevents getting sprayed in the face when the wave bounces off your body.
You can duck and let the wave roll over you. Ducking is great for medium, regular waves. It is not so great in chop, because you would be ducking all the time. And you would probably get knocked backward, since choppy seas tend to swirl beneath the surface. All the energy is not in the wave; it is dispersed throughout.
You can float. This is okay in light chop. The problem with floating is that you cannot see what is coming. And you will get flipped upside down and slammed into the sandy floor if a good-sized wave comes.
You can get behind the waves and push up, moving with the water. Jump lightly, keeping only your head above the water. This is not possible if the waves are breaking far out or if you are too short to touch the bottom. Then you would have to tread water, and that takes a lot of energy. But if you can get past the where the waves are breaking, you can rise and fall with them as they begin.
You can dive through the wave. This works for waves of any size (okay, not tidal waves). You make your body stiff as a board, arms straight in front of you, and aim for the base of the wave. It will roll right over your back. But you have to stay stiff enough. If you are floppy, you will get churned. But if you do it right, diving through the wave is the safest, most reliable way to get through.
When you are in the ocean, you have to do something. If you do nothing, you will get churned in the waves, scraped by pebbles and shells, and slammed into the floor.
It would be great to get out of the water. And we will get out of the water one day. But we needed and wanted the experience of the ocean, and we chose to get in.
*****
For small and medium trials, we have lots of ways to get through, like digging in our toes, jumping and twirling, ducking, and floating.
Sometimes we can strategize with bigger trials, anticipating them and letting them roll through us before they get too bad.
But sometimes we have big trials right in our face, and we have to dive through, staying stiff enough that they roll over us. We are using the same amount of energy as if we had dug in our toes or jumped, but we are using our energy in a different way. A way that works better. I think we can learn the diving strategies from other people who have been there. I taught my friend with the literal ocean. With my figurative ocean, I am learning from magazines, websites, books, and my shrink. That helps. But I still have to use the strategies.
Talk to my doctor and nurse, use the cognitive-behavioral strategies, take my medications, try other meds when mine do not work, go to PT, go to yoga, talk to friends, and cry when I need it.
Sometimes there are tidal waves, and no strategy in the world will get you through. Maybe my trials are like the North Shore. So what can I do? Well, even the North Shore gets calm sometimes. I hope my MS does.
Deep Waters and Fiery Trials
Sometimes it seems like spirituality and chronic disease cannot coexist. I believe in God, and I know the church is true. I know I will return to live with God after I die--that is why I want to die. But how can I live like this?
I guess spirituality is not the point. The point is that question: How can I live like this?
I hate this life. I hate life with MS. It sucks. It is so difficult that sometimes it seems unbearable. Then I go to church and hear about how I need to give to other people, serve other people.
OK, that is what is bothering me. I feel like I am not doing enough, and at the same time I feel like I am doing all that I can, and people should recognize that. Maybe they do. Not a lot of people know how much I serve a disabled friend every day.
I wish I could do more, serve more. I wish I could babysit people's kids when they need a break. I wish I could provide education on behavior management and child development to parents in the ward. I wish I could finish my website, so I could easily refer people there for resources. I wish I could help with music. I wish I could participate in the choir! I wish I could be more involved in the ward. I miss the me who had three callings and did them all with a smile. I wish I could do my one calling now.
I hate when people ask how I am doing. I feel like the answer is always wrong. Often I say fine, because that is the right answer. The true answer makes people uncomfortable. They look away, they do not know what to say. The true answer is that I am hanging in there, but barely.
Today I held back tears many times during church. When we were told that we must serve if we are following the Savior. When we learned that of course it would be easier not to be here on earth, but that is a pretty lame thing to think. When people shared how their prayers were answered through other people. When we sang "Where Can I Turn For Peace?" When we sang "Lead Kindly Light." I do not remember the rest. My brain is shot from interpreting.
Prayers answered? I guess my prayers are answered. Sometimes. I believe that prayers are answered when we pray in faith IF it is a good thing that we are asking. If the thing we ask for is in accordance with the will of our Father. Heavenly Father wants what is best for us, so if we ask for something that is not in our best interest, he generally will not give it to us.
So I assume that suffering is in my best interest. It does not make me believe in God less. It does make me wonder about prayer. I think maybe I am not doing enough. Not praying enough. We are supposed to have a prayer in our hearts all the time. I cannot remember to do that. I forget everything! I forget what I came into a room to get, etc. I have actually introduced myself with a totally different job title before. The wires in my brain are frayed and crossed.
Of course, I feel dumb for pitying myself. I have put up a strong front for a long time, and I am getting tired of doing that. Sure, I can bust my butt and interpret for an hour, but then I am wiped out for several hours. When I am sick, in pain, fatigued (don't call it tired), and wiped out, I often get frustrated or pity myself.
Today my right arm would not work properly. I had a hard time keeping it up and signing. I did not realize it was that way until I started interpreting. It was weak. So I used my left arm more, and I let someone else take over for a while. How can I use this as a metaphor? When something in my body is not working, I cannot force it to work. I have a choice to compensate if possible or to let someone else do something for me.
I have improved with letting people do things for me.
I am sick of people expecting me to smile through it. You would not smile if you were in my situation! Feeling awful and still having all the responsibilities of life. Not being able to do things physically. In pain. Fatigued. Fatigue is so much more than tiredness. Imagine feeling like you have the flu every day. And then people expect you to grin and bear it. You could for a while. For how long? For a month? A year? It has been well over a year for me, and things are getting worse, not better.
I am so disappointed that I am not getting better. I had a good day on Friday, and then I was really sick yesterday. Today I am a little better than yesterday, except that my arm got weaker again. I am having so much trouble with stairs. I walk slower. At least my pain is better. But I had another not-so-good night of sleep last night. How disappointing. I slept great Thursday night, so-so Friday night, and then up every two hours last night. And it took me a couple of hours to fall asleep.
When I had a good day on Friday, I fully expected that I was getting better. Hope comes easily to me. And I know the true meaning of hope, that it is a confidence that we will have eternal life if we do what is required. Here I am using the worldly meaning of hope, a sort of optimism.
The problem with hope is that it sets me up for disappointment. Repeated disappointment has led to depression or anxiety sometimes.
When will I get better? If I knew it was for another year, I think it would be much easier to handle. When you can see the sun coming through the clouds, even if it is really far off, it makes it easier to withstand the storm. Thinking back to the song "Lead Kindly Light," I know that we all walk in darkness and cannot see where our path leads. One step enough for me? I am not sure it is. My path is through deep waters. Hm, that reminds me of another hymn, "How Firm a Foundation." I love the fourth and fifth verses--the ones we rarely sing.
When through the deep waters I call thee to go, the rivers of sorrow shall not thee o'erflow. For I will be with thee, thy troubles to bless. And sanctify to thee thy deepest distress. When through fiery trials thy pathway shall lie, my grace, all-sufficient, shall be thy supply. The flames shall not hurt thee; I only design thy dross to consume and thy gold to refine.
Hm. I feel like the flames have hurt me. But I also feel like my dross is being consumed, and I hope that my deepest distress will help to sanctify me.
When I pray for relief and do not get it, I feel alone and sad. I see that my disease has blessed other people's lives. I bonded with two other women through it. I regained contact with my dad.
The person most blessed by my MS is one of my best friends. She is becoming less selfish. She is learning to give, beginning to feel charity. That is awesome for her.
But it stinks for me!
I wonder how much deeper my waters will get. Will I be paralyzed? When? Not knowing is so hard. Of course no one knows their future, and anyone could be hit by a bus tomorrow, blah blah blah. I would much rather be hit by a bus. (and die... not hit by a bus and live with a brain injury or something... that is pretty much what I already have...)
OK, I should talk about another metaphor for life and trials, which I discussed with my shrink. I am going to end this post and make a separate post for that metaphor.
I guess spirituality is not the point. The point is that question: How can I live like this?
I hate this life. I hate life with MS. It sucks. It is so difficult that sometimes it seems unbearable. Then I go to church and hear about how I need to give to other people, serve other people.
OK, that is what is bothering me. I feel like I am not doing enough, and at the same time I feel like I am doing all that I can, and people should recognize that. Maybe they do. Not a lot of people know how much I serve a disabled friend every day.
I wish I could do more, serve more. I wish I could babysit people's kids when they need a break. I wish I could provide education on behavior management and child development to parents in the ward. I wish I could finish my website, so I could easily refer people there for resources. I wish I could help with music. I wish I could participate in the choir! I wish I could be more involved in the ward. I miss the me who had three callings and did them all with a smile. I wish I could do my one calling now.
I hate when people ask how I am doing. I feel like the answer is always wrong. Often I say fine, because that is the right answer. The true answer makes people uncomfortable. They look away, they do not know what to say. The true answer is that I am hanging in there, but barely.
Today I held back tears many times during church. When we were told that we must serve if we are following the Savior. When we learned that of course it would be easier not to be here on earth, but that is a pretty lame thing to think. When people shared how their prayers were answered through other people. When we sang "Where Can I Turn For Peace?" When we sang "Lead Kindly Light." I do not remember the rest. My brain is shot from interpreting.
Prayers answered? I guess my prayers are answered. Sometimes. I believe that prayers are answered when we pray in faith IF it is a good thing that we are asking. If the thing we ask for is in accordance with the will of our Father. Heavenly Father wants what is best for us, so if we ask for something that is not in our best interest, he generally will not give it to us.
So I assume that suffering is in my best interest. It does not make me believe in God less. It does make me wonder about prayer. I think maybe I am not doing enough. Not praying enough. We are supposed to have a prayer in our hearts all the time. I cannot remember to do that. I forget everything! I forget what I came into a room to get, etc. I have actually introduced myself with a totally different job title before. The wires in my brain are frayed and crossed.
Of course, I feel dumb for pitying myself. I have put up a strong front for a long time, and I am getting tired of doing that. Sure, I can bust my butt and interpret for an hour, but then I am wiped out for several hours. When I am sick, in pain, fatigued (don't call it tired), and wiped out, I often get frustrated or pity myself.
Today my right arm would not work properly. I had a hard time keeping it up and signing. I did not realize it was that way until I started interpreting. It was weak. So I used my left arm more, and I let someone else take over for a while. How can I use this as a metaphor? When something in my body is not working, I cannot force it to work. I have a choice to compensate if possible or to let someone else do something for me.
I have improved with letting people do things for me.
I am sick of people expecting me to smile through it. You would not smile if you were in my situation! Feeling awful and still having all the responsibilities of life. Not being able to do things physically. In pain. Fatigued. Fatigue is so much more than tiredness. Imagine feeling like you have the flu every day. And then people expect you to grin and bear it. You could for a while. For how long? For a month? A year? It has been well over a year for me, and things are getting worse, not better.
I am so disappointed that I am not getting better. I had a good day on Friday, and then I was really sick yesterday. Today I am a little better than yesterday, except that my arm got weaker again. I am having so much trouble with stairs. I walk slower. At least my pain is better. But I had another not-so-good night of sleep last night. How disappointing. I slept great Thursday night, so-so Friday night, and then up every two hours last night. And it took me a couple of hours to fall asleep.
When I had a good day on Friday, I fully expected that I was getting better. Hope comes easily to me. And I know the true meaning of hope, that it is a confidence that we will have eternal life if we do what is required. Here I am using the worldly meaning of hope, a sort of optimism.
The problem with hope is that it sets me up for disappointment. Repeated disappointment has led to depression or anxiety sometimes.
When will I get better? If I knew it was for another year, I think it would be much easier to handle. When you can see the sun coming through the clouds, even if it is really far off, it makes it easier to withstand the storm. Thinking back to the song "Lead Kindly Light," I know that we all walk in darkness and cannot see where our path leads. One step enough for me? I am not sure it is. My path is through deep waters. Hm, that reminds me of another hymn, "How Firm a Foundation." I love the fourth and fifth verses--the ones we rarely sing.
When through the deep waters I call thee to go, the rivers of sorrow shall not thee o'erflow. For I will be with thee, thy troubles to bless. And sanctify to thee thy deepest distress. When through fiery trials thy pathway shall lie, my grace, all-sufficient, shall be thy supply. The flames shall not hurt thee; I only design thy dross to consume and thy gold to refine.
Hm. I feel like the flames have hurt me. But I also feel like my dross is being consumed, and I hope that my deepest distress will help to sanctify me.
When I pray for relief and do not get it, I feel alone and sad. I see that my disease has blessed other people's lives. I bonded with two other women through it. I regained contact with my dad.
The person most blessed by my MS is one of my best friends. She is becoming less selfish. She is learning to give, beginning to feel charity. That is awesome for her.
But it stinks for me!
I wonder how much deeper my waters will get. Will I be paralyzed? When? Not knowing is so hard. Of course no one knows their future, and anyone could be hit by a bus tomorrow, blah blah blah. I would much rather be hit by a bus. (and die... not hit by a bus and live with a brain injury or something... that is pretty much what I already have...)
OK, I should talk about another metaphor for life and trials, which I discussed with my shrink. I am going to end this post and make a separate post for that metaphor.
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