Church

Although I was feeling poorly, I went to choir practice before church last Sunday. I really enjoyed it, but it wore me out. I was tired before church even began. I thought about pushing through but ended up leaving after sacrament meeting. Fatigue, dizziness, and horrible, burning pain in my legs and hips. The textured upholstery on the pews and chairs felt like sitting on sandpaper--with a sunburn. And my arms felt so heavy.

All of those issues do not add up; they multiply. Or they work on a logarithmic scale. Combined, it is not 8 fatigue + 5 dizziness + 9 pain + 4 heaviness = 26 suffering. More like 126. Sort of like how blindness sucks, deafness sucks, but deaf-blindness? Watch out.

And so I have a dilemma. Go to choir and probably not be able to stay for all of church, or forgo that joy so that I can handle at least two meetings or maybe all three. It is a hard choice. And this week will be super hard, because the choir is singing. Singing is effortful, but when you perform, it is standing. I never stand for five minutes straight, but less stand and sing for five minutes! I am planning to stand behind the piano and lean into it, let it bear some of my weight. So with practice before church, my interpreting workout during the first meeting, the choir number during the first meeting... hm, will I be able to do my interpreting workout during the second meeting and my piano workout during the third meeting? Goodness. At least I have help for interpreting. But I still need to do some. I wish I had a nice recliner to sit on. With armrests and a head support. Oh gosh, I just realized that a wheelchair would fit the bill! Haha, that is funny.

At least I am not averse to using one, like a lot of people seem to be. I would not mind it a bit. I think. I would mind if I could not walk at all, because I could not get things off shelves, etc. But if I could walk to get in and out of a car, drive, wheel around to save effort... Of course, I would need a motorized chair. My wimpy arms would not take me far!

Back To the Drawing Board

Today was another "DONE" day. As in done with this life. When I am so sick that I can barely drive, barely work, barely move, I feel like I cannot do it anymore. 

When I got home from work today, I could barely hold my head up. It took three hours to recover to the point where I feel sick but at least can move. I do not want this!

I had good days last Thursday-Saturday, but I started downhill again on Sunday. And now here I am, stuck on the couch, with a miserable, sick body. I could take it if all I had to do was lie on this couch, but I have to work tomorrow. And next week, and the week after, and for years to come. 

I did not think it would be like this. I read about all of the physical symptoms, like losing my vision or not being able to walk. I did not realize that fatigue and dizziness could be so disabling. If I had a bum leg, I could still work. But if I do not have the energy to sit up, how can I work? And how long until it is that bad?

My First Wheelchair

I guess it technically was not my first ride in a wheelchair--just my first wheelchair ride outside of a hospital.

Today my best friend wanted to buy some new clothes. She lost weight! I was really not up to it, after one of the worst weeks ever. So I borrowed a wheelchair from guest services. It worked out great.

My main issues are fatigue, dizziness, some vertigo, poor balance, difficulty walking (kind of ataxic), and decreased sensation in my left foot, leg, and buttock. Or crazy pain. It goes back and forth.

But I also have a mild sore throat. Maybe I am normal-people-sick, which is making my MS flare up? Too bad it is a holiday weekend, and my doctor comes in late on Tuesdays. I will not be seen for at least three days, maybe a lot longer. Hopefully I will feel better by then. I have felt absolutely awful since Monday--six days.

Oh, I also have a headache. Not a migraine which I had for eight continuous hours yesterday, after I took a full Nuvigil. I was glad that my heart did not pound and my hands did not shake, but the migraine was pretty awful. I did have a bit more energy than I would have otherwise, and I was walking better. But I spent the day sitting down, mostly writing email (seriously, almost all day). I need to weigh the pros and cons of taking Nuvigil. Including the fact that it is a stimulant with the possibility of dependence.

While my friend pushed me through the mall and through stores, some people stared. I felt weird and a uncomfortable with the attention. I do not generally look for attention. I remembered my yoga teacher commenting that standing in tadasana or sitting with that kind of alignment demonstrates confidence. I decided to sit up straight and smile at people, especially children. They were closer to my level! I felt happy, because I was able to stay in the mall for three hours, and I doubt I would have lasted 30 minutes on my feet, even with my cane. My arms were not strong enough to wheel myself more than a few feet, but my friend did not mind pushing me. It was a good experience for both of us.

Darn It, the Amitriptyline Was Working

Yes, the amitriptyline seems to have been working. I did not take it last night, and my pain was worse again today. Not as horrible as it was, but definitely worse. I wish I could have tolerated the amitriptyline side effects. Hopefully the new medication, desipramine, works. I took it tonight.

No issues with my Avonex shot. It hurt today though. :(

Absolutely no dizziness or vertigo today. Interesting that this has improved in tandem with my vision. Related?

And today I am once again feeling hungry and full. Back to normal. So... was that the amitriptyline? Or some belated effect of steroids (seems less likely).

Sensory:

-Pins and needles: 1
-Tingles: 0
-Dysesthetic pain: 8
-Paresthesias: 4

-Numbness: 3
-Vision: 1-2, still fluctuating but so much better
-Nerve pain: 7
-Hearing: 0

Motor:
-Walking: 1
-Sore muscles: 3
-Fine motor: 2
-Weak muscles: 4
-Spasticity: 1

Cognitive:
-Processing: 0, had a somewhat high-pressure meeting and was speaking fluently! And no issues keeping up with the discussion. I did not even realize it until just now, when I looked back on my day.
-Memory: 0, I think
-Attention: 0
-Confusion: 0

General:
-Fatigue: 3
-Balance: 2
-Sleep: 0
-Bladder: 2
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 3

Emotions: Nothing to discuss.

Casseroles Are Good, Friendship Is Better

Today at church, one lesson was about a man who we all knew of but did not really know. No one realized how kind, loving, and generous he was. And no one realized that he had had some major health issues--he was bedridden for four years. Everyone gave up on him except his wife. The point was made that as good as a ward may be, people with chronic health conditions end up feeling alone.

So true. This is exactly the issue I struggle with. People are great with acute problems, but they do not have the stamina for someone with a problem that does not let up.

My MS is not going anywhere. It is only getting worse. I am not going to complain to people; I do not even bring it up. But chances are I am in pain and feeling horrible every time you see me. Yes, always. Imagine how that feels.

They were talking about how casseroles are great, but people with chronic illnesses need other things. Someone to talk to, etc. This is very true!! But it is also true that casseroles help, too, at least for me. I am so tired every day that I certainly am not cooking casseroles. I would be eating TV dinners every day if someone did not cook for me.

I took Vicodin again today and tolerated it well. It might help a little, but not much.

I felt sort of hungry after 7-8 hours of not eating. More like nauseated than really hungry. Still not feeling full when I have eaten a lot. Afterward my stomach feels big and bloated, but it takes time to notice that. So I have to monitor what I eat visually instead of relying on feeling full, like usual.

I became dizzy a few times today, most notably during the third hour of church. Oh my goodness, I was so exhausted after church today. I had no help with interpreting. I interpreted the first and third hours. And of course I did choir before church. And got set apart after church (after waiting around for 20 minutes). Utter exhaustion. I could barely walk out of there.

I emailed Dr. Rick about the dry mouth problem. Today it was dry again, maybe a tiny bit better than yesterday. Less sour, for sure. But I woke up with the roof of my mouth feeling quite raw, and that has continued. It hurt to take pills and to eat. Dr. Rick said that is likely from the amitriptyline, and we can try something else.

I also mentioned the can't feel hungry, can't feel full problem. He said he does not know what to think about that. At least he is honest. I like that.

Sensory:

-Pins and needles: 7
-Tingles: 0
-Dysesthetic pain: 9
-Paresthesias: 8

-Numbness: 3
-Vision: 3, good morning but then it got worse. Fluctuating. Not as bad as it was though.
-Nerve pain: 6
-Hearing: 1

Motor:
-Walking: 2
-Sore muscles: 4
-Fine motor: 3, dropping stuff, poor writing, poor fingerspelling
-Weak muscles: 4
-Spasticity: 5

Cognitive:
-Processing: 2
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 7, and I think the dizziness made this worse
-Balance: 2
-Sleep: 0
-Bladder: 0, I am having some issues in the mornings, which I attribute to amitriptyline, but then I am fine all day.
-Proprioception: 1
-Swallowing: 0
-A: 0
-B: 0

Emotions: I almost cried during the part of the lesson about people with chronic illnesses. I tried to be very cerebral about it so as not to cry--success. Then I almost cried when we were waiting to be set apart. They were wasting time, and I was so exhausted. I was past my limit. Then I did cry a bit during my setting apart. That's ok. I was irritable a few times when I was dizzy and had trouble focusing and understanding things, especially in my second language.

10 Down, 7 to Go

Today was my 10th day on steroids (I am down to 40 mg now), and it was pretty much like the last few. I did have more energy today, despite sleeping poorly yet again. So that was good. I also did not do anything physically strenuous.

My symptoms are still kind of rough, especially vision and joint pain. If anything, my vision is worse today. And I have muscle pain... and spasticity? I definitely have spasticity back in my legs, but I am not sure about my arms.

I seem to be hot a lot lately, or warmer than others around me. I have not been nearly so shaky today as the last week. I had a few bad attacks of vertigo, but just a few. Dizzy sometimes, but less than the last week. I think things are moving in the right direction.

I hate to complain and complain, but it has been really helpful having these comments when trying to reconstruct when symptoms or side effects began and ended. I am planning to send some bullet points to my neurologist and internist when all is said and done.

Alright, I am tired and hoping to sleep, so I will get to my daily data.

Sensory:

-Pins and needles: 4, both legs, also on my butt super early this morning (like 4:00 am)
-Tingles: 1
-Dysesthetic pain: 7, mostly left leg, except for the horribleness in my butt (well, the side of it--sciatic nerves) that was more like a 9 and was bilateral, keeping me up in the wee hours of the morning
-Paresthesias: 0
-Numbness: 3, some tongue problems again, as well as top of right foot and the other usual areas. Left fingertips also having some issues.
-Vision: 4, getting worse because the TV is pretty blurry now. I can make out the closed captions, which are very large, but they are hard to read. And oddly, the pictures on the wall look 3D.
-Nerve pain: 6, mostly left upper back leg--sciatic nerve
-Hearing: 0

Motor:
-Walking: 4, still pretty stiff from the steroids, not sure how much from spasticity, balance, etc. Lots going on.
-Sore muscles: 8, backs of legs (especially tendons behind knees and left hip), backs of arms/shoulders especially right
-Fine motor: 3
-Weak muscles: 5, right weaker than left, at least for my arms. I just tested and can lift my laptop with my left arm but not my right. My legs seem better, though. Maybe because I rested them so much?
-Spasticity: 7, way on up :(

Cognitive:
-Processing: 1
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 5
-Balance: 4, especially hilarious in the dark
-Sleep: 6, about 6 hours
-Bladder: 0? Did not pay attention
-Proprioception: 2
-Swallowing: 0
-A: 0
-B: 0

Emotions: Mostly okay. A few grouchy moments. Yesterday I would have had something to say--I cried several times. I probably need to break down and cry, let out some stress from the week. I am probably disappointed that the steroids have gone the way they have. I did hope for better this time.

Things Go Downhill for No Apparent Reason

After blogging yesterday, I should have knocked on wood!

About an hour after I got home, I began feeling dizzy. Two hours after I'd been home, I was having difficulty focusing my eyes. They kept jumping around. I was trying to type something, and I was determined to finish it, whether my eyes and arms (which were becoming sore and weak) wanted to cooperate or not. It took me forever, but I did.

By 9:00 pm, I was not able to focus my eyes at all, and I couldn't walk a straight line. My balance was poor, and I was just so dizzy. I felt like the room was spinning. I ended up going to bed early.

I woke up feeling the "stretchy" feeling in my legs--which makes me walk on the balls of my feet unless I actively try not to. When I feel like that, not walking on the balls of my feet is uncomfortable. I also felt weak and shaky, especially my legs.

At church, I was moving slowly. I sat on the pew and had difficulty keeping my head raised to look at the speaker. My limbs felt encased in concrete. I couldn't cross my legs, because it took too much effort to keep one leg on the other.

I was grieved to find that I could not sing more than two verses of a song. I felt tired and light-headed. Poor breath support, I think. That was so disappointing, and it happened on every hymn throughout church. I love singing.

I began to feel the pins and needles tingles in my right lower leg and both feet. Mostly I just felt tired. And something odd... I felt like my awareness of my legs waxed and waned. There were periods of time where I didn't feel like I had legs, although intellectually I knew they were there. I could see them. But I couldn't feel them. It wasn't a matter of numbness, although the pins and needles made them borderline numb. I think it was compromised proprioception. So I would either feel pins and needles (which were mild) or feel like my legs were not there.

I also felt pins and needles up the back left side of my scalp a few times.

My legs and arms were both weak.

I dared to give an answer in Gospel Doctrine, which I sort of regretted. The teacher asked me a follow-up question. My brain wasn't processing and organizing well, but I tried to give an answer that made sense or was at least on topic. Whatever.

I shared an example in Relief Society, which turned out well. I had had time to consider it before raising my hand, so I was able to make a meaningful contribution. And no follow-up questions.. whew. Also, it was on a familiar topic, illustrating the teacher's point by giving an example of something that had happened to me. Text to self connection, so to speak--the easiest kind. The language and concepts were less remote and complex than in Gospel Doctrine. The follow-up question that I had been asked in that class was, "How did the atonement give Christ the enabling power of grace?" That's a hard question even on a good day!

And now? I'm having difficulty walking. My legs are too weak. They feel sore, like I had a major workout. That makes no sense, because I sat on my butt all day yesterday and this morning! I'm trying to make connections, but it's hard to find patterns. Could it be the short time that I was out in the heat yesterday?

Heat definitely has an impact. I've had my laptop on my lap while writing this post, and now my quads are cramping.