Why Am I Doing Better?

I helped paint a bathroom off and on all day. Taping, painting, painting again. Breaks. Like yesterday, I started off kind of rocky--it seems like mornings are the worst as far as my muscles cooperating. I am so STIFF in the morning. But evenings are worst for the nerve pain, pins and needles, etc.

Also like yesterday, I was able to do so much more than I have been able to do in the last few months. I am definitely on the mend for now.

I feel very strongly that the Lord giveth, and the Lord taketh away. My health began a dramatic, upward climb on Wednesday, for no apparent reason. If I am on Avonex, that certainly would not be the reason. If I am on daclizumab, it is a little early for progress like that, and it was not a week after the shot, which I would expect based on natalizumab stories. If it were from the increased desipramine (as this upturn occurred as that medication began to help my pain), how is that possible? If it were PT, why now? And why so suddenly, after a sharp downturn in health the two previous weeks? There does not seem to be a rhyme or reason to it, except what I felt Friday night in the Lord's house: The Lord giveth, and the Lord taketh away.

Sensory:

-Pins and needles: 1, woke up with them, then none all day
-Tingles: 0
-Dysesthetic pain: 3, also woke up with it, then not much all day
-Paresthesias: 2, woke up with the electricity in my legs

-Numbness: 2
-Vision: 0
-Nerve pain: 3, evening
-Hearing: 1

Motor:
-Walking: 1, stiff in the morning, better as the day went on
-Sore muscles: 2

-Spasticity: 3, in the morning, got better, worse as I was painting--my hand would suddenly cramp. OW! And at one point my leg cramped and went out on me, and I almost fell off the ladder.
-Weak muscles: 2

-Endurance: 4, I took breaks, but I did pretty well with the painting project. I did wilt pretty quickly when I was working near the hot lights, near the ceiling.

-Fine motor: 2

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

General:
-Fatigue: 4, but I was doing physical work--so pretty good!
-Balance: 0

-Sleep: 0

-Bladder: 1
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 8, ruined my evening

Emotions: Fine. Feeling a sense of wonder that I have not collapsed back into an MS heap from all this physical work. Part of the wonder is wondering when/if that is going to hit again.

Tough Day But Good Memories

I am not having a great day, health-wise. But I am pretty happy, and I enjoyed seeing my Little Doll today. Oh, you do not know you Little Doll is?

Little Doll is my darling student, who is selectively mute. She can talk but anxiety makes her clam up. I was the first person she spoke to outside of her family. I have written about Little Doll before, probably last fall.

Since that experience last fall where Doll fell off her bike and I stayed to comfort her, rocking her until Mom showed up, Mom has loved me. I told her about my MS--the only parent I have told. She cried for me. She is so sweet. And she is a nurse, so she knows a bit about what this might mean for me.

Mom and I keep in touch regularly, because I have her working on things at home with Doll. Sometimes I visit their house to teach Mom how to work with Doll. Last week I totally spaced sending her the work for that week, and I ended up trying it for the first time in the classroom with Doll. One on one, then with some other kids around. My heart burst with love and pride when [after first trying to refuse] Doll put herself out there and attempted what I asked her to do. As I was leaving, I took her aside to tell her how proud I was of her and what a big girl she is.

I emailed Mom about it, and we ended up going back and forth for a while. I admitted that I love Little Doll. She said that Doll knows it, and she only tried something new that day because she trusts me. Apparently Doll had bragged about me being proud of her. Mom said that I am special to their family. And that both Doll and she are not ready to lose me in the fall. I said that they cannot lose me that easily.

I hope we can keep in touch. I really like Mom and would enjoy being friends with her. And of course I love Doll dearly. I love hearing her quiet "I wuv you."

Today I met Mom at the child's school at drop-off time to teach her something. As she was leaving, she grabbed my arm and just rubbed it briefly. That simple gesture was touching, and it made me feel special and... noticed? I don't know. When Mom volunteers at the school, she arranges it for days I will be there, and she helps me get up, looks on carefully when we dance during music, etc. She is just very sweet, and today she and her Little Doll brightened my day.

On to a less fun part of the day...

Today I had a PT session with a different PT. I have worked with her a couple of times before and did not really care for her. She is alright. Today she was giving me a hard time about not doing my exercises on days that I do not have PT. I am usually so tired! I barely make it through work. I am overwhelmed by life. And even when I am not exhausted, I forget. So this PT had me set calendar reminders on my phone for it.

She also had me work a little on my posture, explaining that I hold my shoulder blades way too far apart, which causes my head to drop forward. It is straining my neck and back muscles. It was good to know, because I have had them work on my shoulders and upper back, but I have wondered why I keep getting out of whack. After the PT session, I tried to remember to pull my shoulder blades closer together. That helped more than thinking, "Sit up straight." I think. I hope I get to work with my regular PT on Thursday.

I cried a little today during PT. I am frustrated, because I feel like I am always playing catch up and always will. A relapse hits, even a minor one like this, and my body is once again a limp noodle. I am afraid it will always be that way. It is discouraging to work so hard just to be a little worse than I was before. I can see that it is better than letting myself go and becoming disabled more quickly, but it is still frustrating.

Sensory:

-Pins and needles: 4
-Tingles: 2
-Dysesthetic pain: 7
-Paresthesias: 3, some electricity

-Numbness: 4, legs falling asleep quickly when I sit cross-legged. Too bad I sit cross-legged frequently.
-Vision: 1, blurry this morning but better now
-Nerve pain: 3
-Hearing: 1

Motor:
-Walking: 2-5, weird fluctuations in my weakness, walking, and fatigue today. I guess they're all related.
-Sore muscles: 4

-Spasticity: 4, arms and legs
-Weak muscles: 6

-Endurance: 7

-Fine motor: 0

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

General:
-Fatigue: 8, was 9 much of the morning and again in the early evening
-Balance: 0

-Vertigo: 0

-Sleep: 0, eight hours

-Bladder: 1, medication
-Proprioception: 0
-Swallowing: 0
-A: 0
-B: 5

Emotions: So happy with Little Doll and her mom.

Catching Up

Well, well, how the mighty [daily] blogger has fallen behind.

I don't know what happened! Forgot. Busy. Oh, well.

Friday was a big day for neuropathic pain.

Saturday was fine in the morning. Went to shrink--good session. Then went to grocery store, which wore me out, came home and collapsed for a couple of hours. Came back to life, went to friend's house for dinner and felt half alive. Then fully alive--practically normal energy for a couple of hours.

Sunday was good for a while, but late afternoon and evening were tough--high fatigue.

Monday was a pretty good day.

Mornings have been rough in general. Probably worse with the time change.

Yesterday started off rough (morning, natch), but then I ended up having a good day.

Today was also rough then good.

I finally read that neuropsych report. I did well, although I know that I would have done better before MS. She did make the comment that environmental distractions are probably influencing my memory lapses, and that the real world is not a distraction-free, quiet environment like the testing environment. More and more, I am noticing that she is right: distractions often cause me to lose track of my thoughts or what I was planning to do. That is not all there is to it, but it is a bigger factor than I thought.

Sensory:

-Pins and needles: 0
-Tingles: 0
-Dysesthetic pain: 6, was 9 on the fronts of my thighs/hips early this morning, 3:00-6:00 am
-Paresthesias: 3, electricity in my lower limbs

-Numbness: 2
-Vision: 0, it has been fine. Just blurry when hot or tired.
-Nerve pain: 2
-Hearing: 1, noticing periodic worsening during the day, as well as the constant buzz that is mostly noticeable when it is quiet

Motor:
-Walking: 1
-Sore muscles: 8, I seem to have pulled a muscle in my left mid/low back. Maybe I slept on it wrong.

-Spasticity: 1
-Weak muscles: 5, having trouble opening doors in public buildings

-Endurance: 4

-Fine motor: 0

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

General:
-Fatigue: 2
-Balance: 1

-Vertigo: 0

-Sleep: 7, about 6 hours, not all together. I was awake for quiet a few hours, slept a little, up again, sleep a little more. Too warm in the room.

-Bladder: 1, just medication effects, I think
-Proprioception: 1
-Swallowing: 0
-A: 2 bc gm yesterday due to B7
-B: 0

Emotions: Fine. Maybe a bit irritable because my back has been bugging me all day.