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.

Got Pretty Sick

I had a fine morning, but I got pretty sick this afternoon. I did not manage my medication regimen well enough, I think. When I was able to get back on track (evening), I did better. The problem is that I had taken one Aleve at 5:00 am and another one at 10:00 am. I started hating life around 1:00, but it was too early to take another one. I ended up taking Tylenol and then just suffering until I could take two Aleve together at 5:30. Around 6:30, things perked up.

And I did not hydrate well enough. I guess that I did not have an appropriate level of respect for Avonex this week. Lesson learned. (Maybe.)

Sensory:

-Pins and needles: 4
-Tingles: 1
-Dysesthetic pain: 4
-Paresthesias: 0
-Numbness: 3, exactly the same as yesterday
-Vision: 4, worse and better... hmm... why does it get worse? Or why does it get better. Not that "better" means close to normal.
-Nerve pain: 4
-Hearing: 2, bad early this morning! Fine all day. The tinnitus lately has been more broad spectrum rather than a more periodic sound (it used to be a very narrow band of noise around 4,000 Hz).

Motor:
-Walking: 3 this morning, but it became 7 for part of the afternoon. Today was definitely the closest to collapse I have been.
-Sore muscles: 7, and that is on Aleve--my poor shoulder and upper arm
-Fine motor: 2
-Weak muscles: 5, although it was 8 at one point (see Fatigue). I could barely walk.
-Spasticity: 6, range of motion is limited in my right shoulder. Plus the usual with my legs, but not all day.

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

General:
-Fatigue: 6, although it was 9 at one point. I actually sat on the floor in the grocery store. Twice.
-Balance: 4, seriously walking sideways in the dark and needing to hold on to things to stay upright. Leaning toward the right (better than the wrong!)
-Sleep: 4, I got 7 hours, though not all at once. Good thing I did not need to get up early, because I was up at 5:00, fell asleep again around 7:30, woke up, slept some more, and final got up at 9:00. Nice.
-Bladder: 0
-Proprioception: 2
-Swallowing: 0
-A: 7
-B: 5

Emotions: I broke down and cried twice today, just feeling so horrible. This afternoon was really bad. And I was irritable--that happens when I am very sick. I was so dizzy, I could not even get up for about two hours. And just feeling like I had the flu. No fever, but a little bit of chills. Anyway, all that made me emotional for some reason. Or maybe the steroids messed with my emotions? I don't know why now, when I am down to 40 mg on the taper. Whatever the reason, I did have a rather emotional day.

Symptom Tracking, Irritability

Sensory:

-Pins and needles: 2, right foot/leg

-Tingles: 0

-Dysesthetic pain: 0

-Paresthesias: 0

-Numbness: 1

-Vision: 2, just blurry

-Nerve pain: 0

-Hearing: 1, fuzzy buzzy

Motor:

-Walking: 1

-Sore muscles: 0

-Fine motor: 1

-Weak muscles: 4

-Spasticity: 2

Cognitive:

-Processing: 1

-Memory: 1

-Attention: 0

-Confusion: 0

General:

-Fatigue: 6, probably a combination of not sleeping well, the IM injection side effects, and regular MS stuff

-Balance: 0

-Sleep: 8

-Bladder: 0, I think

-Proprioception: 0

-Swallowing: 1

-A: 0

-B: 1

Emotions: OK for the most part. I saw my shrink today. I brought up my irritability. I need to figure out how to reduce stress and relax. She asked how I relax, and I honestly had no idea. I brought up skiing. I cannot exactly go skiing every day. I really do not know, so I will need to work on that. It is complicated.

I later remembered that I often become irritable when people make things harder for me, physically or cognitively. Stepping in front of me, interrupting me, asking me to do something when I am tired, etc. Whether they are aware or not does not seem to make a difference. It could be people I know or strangers. That makes me irritable very quickly. That is one reason I loved using my cane the day I tried it out; people accommodated me and I did not become irritable at all. I was able to enjoy shopping like I used to.

Used My Cane and Got Attacked by a 3-Year-Old

Today I finally tried out my cane at mall. I ended up stopping to google how to use a cane--the Mayo clinic had some good information on their website. Ah, match it up with the weaker leg but in the opposite hand. And use it on either side if just for balance. Got it.

Things went much more smoothly after I actually knew how to use it.

I loved it!

People totally treated me as disabled, which I sometimes was a little embarrassed about. But mostly it was a big relief. They got out of my way! I was much less stressed. Usually I become very irritable when I have to walk around, especially in crowds, but I did not become stressed at all today. I still had to stop and rest once, because I was tired, but overall I felt the cane made things easier. I walked in a straight line instead of a wobbly line, lol.

So that was good, but unfortunately I had kind of a rough day. I was tired and sickly all day. Not nauseated, but heavy-headed. Mild vertigo.

It did not help when I was attacked this morning by a three-year-old. Kicking, hitting, biting, pulling hair, and scratching--she actually drew blood. Delightful. Managing her tantrum really took it out of me. I passed the tantrum management on to her teacher.

I tried to practice the piano this evening, because I said I would play on Sunday. It is really an exercise in frustration, because I suck. Sometimes. And it has nothing to do with how much I practice. I ran through it two weeks ago and was awful. I ran through it on Sunday and sounded great. Today I was awful again. It just depends on how my nerves are working. With it being a combination of processing (reading music is like doing math, in a way), fine motor, gross motor, and proprioception, there are quite a few things that could go wrong.

Sensory:

-Pins and needles: 5, so bad during a meeting this afternoon that it felt like my leg was squeezing itself. Pins and needles or paresthesias? Hard to tell the difference sometimes. Or is it numbness?

-Tingles: 0

-Dysesthetic pain: 5 during that meeting, but I was due to take a pill

-Paresthesias: 5, see above

-Numbness: 1

-Vision: 2, mild eye pain, blurry off and on, especially when physically working hard or feeling fatigued

-Nerve pain: 4

-Hearing: 1, some very mild tinnitus

Motor:

-Walking: 4, very wobbly, unsteady, weak

-Sore muscles: 3

-Fine motor: 1

-Weak muscles: 6

-Spasticity: 5

Cognitive:

-Processing: 1

-Memory: 1, forgot my visiting teacher was coming over. Did not check my calendar after work, because I "knew" I had nothing this evening. That is the problem with cognitive impairment. It makes me dumb!

-Attention: 1

-Confusion: 0

General:

-Fatigue: 9

-Balance: 1

-Sleep: 1

-Bladder: 0

-Proprioception: 1

Emotions: Suck. Emotions suck. I am doing okay, though.