Trauma?

I wonder if I should make an appointment with Dr. Eric to talk about the SCS surgery. Obviously it sucked, but I did not think it was psychologically damaging until today. Someone asked me how I was feeling, and I started to cry when I thought about the surgery. I considered the possible psychological trauma of the event as I wrote my blog post about it, but I did not feel traumatized at the time. I was surprised, because I thought it was odd that I could be cut open while awake and not be traumatized. Maybe it took some time to hit me.

Or maybe I am just tired. I did not sleep well the last two nights. And yesterday I wore myself out helping an underprivileged kid with a school project. And a Wii project. :) I cannot believe I did not sleep after that!

Tonight I am going to take half of a muscle relaxer, along with my Ambien.

I do not know if I am really traumatized by the surgery or just worn down by the pain and fatigue. I feel like I need to cry. Gosh, I am exhausted.

Good Day!

I had a good day today! I love life without that horrible fatigue. My fatigue level is at maybe 4 today. I suppose that if I had to go to work it might be worse, but I did make it through all of church without issues. The piano pedals did not kill my leg muscles.

I sure hope the good times keep rolling.

Sleep Specialist

I saw the sleep specialist a few days ago. She is a PhD nurse practitioner working at a sleep clinic. I will call her Goola.

She is not sure why my sleep has become light and fragmented, but she would like me to try behavioral strategies for it. She said not to get in bed until I am so tired I cannot keep my eyes open. Maybe 2:00 am. I was surprised by that advice, to say the least. Usually you read that keeping a consistent bedtime is the best way to sleep well.

Goola said not to stay in bed awake more than 20 minutes. I protested that I am way too tired to get up. She said that I must train my brain that bed is for sleep. It does make sense, but she needs to keep in mind that MS involves significant fatigue. I may not be able to get out of bed when I am extremely fatigued. But I said that I would try.

I asked what to do if I wake up after I have slept (at 2:00 am or whenever I am too tired to keep my eyes open). She said that she is confident that I will remain asleep after I have fallen asleep.

Goola wants to check my thyroid and iron levels. Deficiencies in those can negatively affect sleep. Fasting blood draw... Boo.

Yesterday someone called me about scheduling a sleep study. Unfortunately I missed the call, because I was at work. The reason that was very unfortunately is because the sleep clinic works on a message-only phone system. You can never speak to a person! So I have to hope that they call back at a time I can answer the phone.

Last night I stayed up until 12:45 am, and I was so tired. But I did not fall asleep until 1:45! I slept 1:45-2:30, 5:30-6:30, and 6:45-7:45. So obviously Goola's prediction that I would stay asleep was incorrect. I will keep trying, though.

I emailed Dr. Rick and Alyssa to update them on that and on how I am doing with the trigeminal nerve pain that appeared on Monday. Honestly, I am doing a lot better the last two or three days. The Trileptal seems to be working! My face pain is a lot better. Before it was peaking at 10 and holding steady around 8. Now it is peaking at 8 and holding steady around 3-6.

The most amazing and confusing change is that my fatigue has been better the last few days. Well, yesterday I got enough sleep, because I took Ambien CR. But today I got less than three hours of sleep (not even three hours straight), and I am handling it so far. I am tired.

I have to admit that I have some issues today that I think are from lack of sleep. Tremor in my left hand, weakness in my legs, spasticity in my legs.

Alyssa called today to check on me, hear about the sleep appointment, and confirm which medications I am taking right now. It was nice to talk to her. She said I sound better than when she saw me a week ago. We also discussed the sleep study plan: visits every four weeks for the next few months, with quarterly visits after that. I still need to do the cognitive testing, and I guess the MRIs. I wonder if Dr. Rick will have access to the MRIs. He normally would not.

Oh my, I am getting really tired now. How on earth can I survive until 1:00 am to go to bed? I hope I can sleep tonight.

As I was getting ready to post this, I got a call from the sleep center. I have an appointment for tomorrow at 9:00 pm!

MS Is BS

I am so angry right now. Irritated. No, angry.

I feel so sick today. This is one of those "like I've been run over by a truck" days. And I am angry! I guess I am angry because I did not see it coming (although I did not feel well yesterday), and I just started to get over a bad one--my fatigue was down to a 7 a lot of the time, and now it is back up at a 9. No, 9.6. Not again! And I am angry, because I am so sick of it. I am so done with MS.

My burning pain has been better the last week. Level 6-8 instead of 8-10. And today it is worse. New area: my shoulders and neck! And another new place... weird... right around my bottom lip. Of course, many burning areas have been that way before.

Last night it was hard to find a comfortable position, because everything hurts. Lying on my left side is out, because my left leg and foot will begin to lose feeling and will have excruciating pain. But my right hip muscle started acting up on Friday, so lying on my right side also hurts. Both nights I tried for several hours to sleep on my own but ended up taking Ambien CR.

But I woke up throughout the night! Even drugged. That is the way is has been for a week, and it makes me nervous.

This morning I realized that, although I want to be able to sleep on my own, it is stupid not to take the medicine right away. If I take it eight hours before I need to get up, then eight hours is all the sleep I will get.. and that is not enough. Not by a long shot. I need to take the medicine right away, and hope to get 9-10 hours of sleep. I read that I should be getting 12-16 hours of rest (not all sleep, but a lot) every day while my body is trying to heal. MS in remission needs more like 10 hours. Ha, I am so not in remission.

The thing that has been disabling me the most this week has been fatigue. It is so bad that it borders on vertigo. It is hard to hold my head up. It makes me a little sick to my stomach.

When I am fatigued, my brain slows down. It is harder to pay attention. Harder to understand people. Harder to express myself. It is much easier to sit and watch, pretend I am listening. Just watching takes energy.

And that issue might be (hopefully is) why I am so sick today. Yesterday I went to a friend's birthday celebration right after church. It was a 45-minute ride--I did not drive--and a 3-hour celebration. I talked, laughed, and had fun. But I could feel myself fading. I felt like I might vomit from the fatigue, from my head spinning. By the time we left, I could barely walk. MS has taken so much. I cannot even have fun anymore.

On the way home, when I was wishing to die, I thought that I must be feeling depression. Like hm, this is worse again, maybe I do need that Cymbalta. And I realized that my emotional state truly is a result of my health. If I have a lot of pain or fatigue, I want to die. Mostly fatigue, honestly--until pain gets to a 9 or 10, fatigue is worse. But if I feel "good enough," like if my pain is 7 and my fatigue is 7, I am happy. Those times are infrequent. Honestly, my fatigue is rarely below 8 or 9.

With my sleep problem already so bad, I do not know if it is a good idea to try Cymbalta again. I am considering going to a natural food store to get empty capsules, so I can half the dose. I know that 30 mg is way too much to start on, based on my reaction last time. But... again, with my sleep being so bad, maybe it would have been bad that week even if I had not taken the Cymbalta. I will admit that the hours straight of panic and anxiety were awful, but no more awful than this burning pain. If the medicine worked for the pain, it would be worth going through the panic temporarily. It did get better after the first few days.  Taking a half dose might help me start off more gently. So I am considering trying again.

I have an appointment at the MS clinic on Friday. Ah, I just realized that I need a ride! Well, I do not NEED one, but if I have one, I will be less miserable. And less likely to get stuck in the city, too tired to drive home.

OK, so clinic appointment. It is just with Alyssa, my nurse. She and I traded some emails last week, and she told me that her mother suffers from a mysterious neurological disease that involves chronic pain. No one knows what the problem is. She understands the psychological impact of this kind of thing, on the patient and on the family. Hm. So there is a good chance that I will cry at my appointment on Friday. I cry almost every day at home, but I try not to cry outside of the house.

I suppose that all the emotional struggle makes my fatigue worse, or it certainly cannot help. But I do not know what to do about that. Would it not be bad to bottle it all up? I do not know.

Today, a really sick day, is one of those times that I am scared for the future. Scared for today. Alyssa reminded me that MS is a heavily-researched field and new treatments are coming to market, and I reminded her that they are not making anybody better. "Disabled less quickly" is considered a success. I told her that I am already hanging on my a thread, that I cannot imagine getting worse.

Ahhh... ?

I slept 10 hours! Thank you, Ambien CR, I am sorry I ever said you are the same as regular Ambien. You are truly wonderful, giving me eight straight hours of sleep, after which I fell asleep again for two more.

But I still feel fatigued today! MS fatigue is so unpredictable. And I know it takes more than one good night to catch up on sleep. At least I do not feel super sick like I did yesterday.

When It Rains

It is raining today, which I love. However, I do not like raining and pouring in the area of my health.

I have a UTI!

So now I am taking ciprofloxacin. When I added it to my medication list online yesterday, it came up with an interactions warning. Actually, it came up with several interaction warnings, but one concerned me: That class of medication can increase CNS activity. People with CNS disorders should probably avoid it.

Huh?

The website interaction checker said that medication can cause anxiety, hallucinations, restlessness, insomnia (!!!), seizures, paranoia.... I realize that it is a possibility and not a certainty, but I did get nervous when I saw insomnia and anxiety on list. I started to email my neurologist, but I took a step back mentally and thought it through. I searched for other people with MS using cipro, and there are many. And it is listed on the NMSS website as a common medication for UTIs, which occur frequently in people with MS. I decided that I could just stop taking the drug if I have a problem.

Speaking of insomnia, I still have it. But I think I am getting better? At least now I feel mentally tired in bed. I have been feeling physically tired but not mentally tired, just feeling awake. Now I am very tired all around. However, I took Ambien CR last night after trying on my own for an hour. It took 30 minutes to fall asleep with the medication, and I slept an hour, woke up, then went back to sleep for seven hours. Not bad. I was really tired getting up--definitely wanted to sleep more. Darn work.

Speaking of anxiety, I am tons better. I am accepting that I need to use sleeping medicine for now, and that I will keep giving myself chances to sleep on my own. And I will pursue the sleep study or appointment with sleep specialist. Yesterday I emailed back and forth with my nurse for a while, and she brought up the sleep study. I explained that I cannot make the appointment; I cannot even speak to anyone. There is only an answering machine for that clinic, and I already left a message with my info and my neurologists info. They should be faxing him. Alyssa did not think they had, and she said she would follow up. She is great.

I am also much less anxious because of my psychotherapy session on Saturday. It was very helpful.

In addition to the UTI, my right ear is bothering me again. It feels "off" and kind of sore. When I touch the skin or bone near my ear, it hurts. I am not pursuing treatment right now. I will give it some time. Maybe email my nurse.

In addition to the UTI and ear pain, my burning pain has been bad. Worse than ever, actually. And it has spread to new areas. It began to increase Saturday afternoon, and yesterday it was absolutely off the charts. I have had the burning pain previously on the fronts of my thighs, my hips, my buttocks, my back below my waist, my knees, my groin, and the bottom of my stomach. Yesterday I had it in those places PLUS my upper chest, arms (particularly the outside, ulnar nerve area), upper back mildly, and hands. It was so bad on my hands. The backs of my hands. This burning pain is back today, though blessedly a bit milder than yesterday. However, today it is on the tops of my feet, especially my right foot.

The burning pain is probably the worst MS symptom. Yesterday I was considering whether the burning pain or the fatigue is the worst. Tough call. But the burning pain gets to 9/10 pain, easily. It makes me want to die. Each minute is excruciating.

Yesterday I took my tramadol every four hours, and I took Vicodin in the evening. The Vicodin did not help. Tramadol helps for about two hours (bringing the pain down to an 8), but then it was right back up.

I wonder if I am more sick because I worked so hard Thursday, Friday, and Saturday. We were doing some work around the house, and although we had tons of help, I still pushed myself and did a lot. I absolutely wore myself out. I was shocked that I still could not sleep!

One good thing is that I have not had vertigo in a couple of days. I stopped taking amantadine on Saturday--maybe that was causing it. The reason I stopped that medication was because I wanted to make sure it was not causing my insomnia.

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?

Great Day and Clinic Visit

I had such a great day today! Best in a month--no kidding. Figures that is when the neurologist sees me.

I felt alert all morning; my fatigue was not bad at all. I started to get tired around 12:30, but not like it has been the last month.

I spoke with Alyssa about my fatigue, and they called in a prescription for amantadine. I am not to get my hopes up, but it might help a little. I guess I will give it a try. I hope it is not terribly expensive. I hate buying medications that I do not end up using.

While the neurologist was testing me, I got really tired. He wore me out! He kept testing certain muscles again and again. I guess he was being really careful in his ratings. But I am supposed to use all of my power each time, and my power only works for a few seconds. He seemed surprised by that--obviously a general neurologist. It seems like I always see general neurologists for the EDSS eval. I did not see Dr. Rick, my MS neurologist, today. But the one I did see was nice. Not as nice as Dr. Andy... I miss him. But much better than the Asian chick!

I had to do laps today which suckkkkked. It is a certain number of meters--two million, I think--which amounts to five laps around the neurology unit. I barely dragged myself around the last two laps, but I did it without holding onto him or taking a rest.

They usually ask me, "Do you think you could walk X number of meters or football fields or whatever meaningless distance we ask?" Maybe next time I should say yes. Maybe I would not have to walk it with them.

So after the strength testing and the walk, I was pretty tired. Not as tired as I have been every day for the past four weeks just from going to work! But tired enough that I was feeling overwhelmed. Thank goodness I had a friend with me to drive me home! When I started to feel upset over being fatigued, I just said to myself that I did not need to worry about getting home. I knew that I could rest in the car and that I did not need to go anywhere in the evening, and those thoughts helped. Then I did not cry. I tend to cry when the fatigue is overwhelming.

Although I was tired, I was still able to talk, so it was not as bad as it has been getting. I had to rest when I got home, but within an hour I was able to sit up and chat with a couple of friends. We watched a movie, and my ADD got to me (I do not really have ADD, but it feels like it these days). I laid on the couch, but my head felt clear. My muscles are relaxing again.

Oh man, speaking of muscles, when I did my shot today, my muscle jumped and clenched! I worked to relax it and had some success. Well, at least I did not hit a nerve or vein again, so it was not too painful. My shots have been going so well. I have not had a really bad one in at least three months. Bad side effects, but not bad shots themselves. I am so much less anxious about giving the shot now.

Seriously, if the bad fatigue comes back tomorrow, I will be crushed.

Mercury, Sleep, and Liberty Jail

I had such a decent morning yesterday, but then it all went downhill. That was disappointing. Oh, well.

Last week I had a blood test for mercury poisoning, at my request. The symptoms have some overlap with MS. I got the results this morning, and my mercury levels are in the low normal range. That was also disappointing, because mercury poisoning is somewhat fixable. MS is not. Oh, well.

There was something I wanted to blog about last night, but I was too tired and depressed. Now I cannot remember what it was!

My word, I am so tired. I got up very early to ride into the city with my friend and interpret for her audiology appointment. I did go to bed early so that I would get eight hours of sleep, but I need more. I read that people with MS need 8-10 hours of sleep during times of remission, 14-16 hours during relapses. Goodness! That sounds about right, though. I am inept at napping, but I do try to lie down sometimes when I am super exhausted. 

Fatigue stinks. Today is another cloudy, scratched bead. 

I saw two of my students from last year, which was fun. I helped a mom feel good about giving her mommy instinct to give her child more attention while he is sick. The child is frequently sick. I guess dad says not to baby the child. Poor mom was feeling guilty about giving a sick child extra attention.

Oh! I know what I wanted to write about yesterday.

My shrink suggested reading Elder Holland's talk about Liberty Jail. It was good. Now I forget what exactly I wanted to say about it, but I did want to write about it. 

I liked the reminder that God really hears our prayers, sees us, loves us. But I did NOT like the reminder that when hard, lonely times come, we need to endure. That stinks! It is hard to feel like God loves me when my body is falling apart, I feel scared and lonely, and my prayers are not answered.

Some of my prayers are answered. But the big ones are not.

Of course I have wondered what I did that was so bad that I deserve MS as punishment. So I liked the section called "Even the Worthy Will Suffer." I do not think of myself as very worthy, but I can see that if totally innocent people suffer, so could I. Maybe it is not constructive to think that I have done something wrong or wonder why this is happening. But I cannot help thinking that if I could figure out why it is happening, I could stop it. Somehow.

And I again reviewed my patriarchal blessing and reminded myself why I am on earth. I have two very clear purposes, as well as another related to one of those two. I can still do those things, even with a deteriorating body. The hard thing is doing them AND working. I do not know how to do other things than work, because it wears me out.

Today I have an earache. What the heck? I was incredibly painful for a couple of hours this morning. Now it feels better. I made an appointment with my internist, Dr. Rob, for tomorrow. Since it feels better now, I do not know if I should go, but I think I will. I would not want that feeling to recur.

Oh! One lady at church works in the office next to Dr. Gabby's new office. Weird... Crazy Dr. Gabby, she sure made things hard on me last year!

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.

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.

Weird Day

I had a weird day today. First off, I had trouble sleeping again because of the heat--I should probably begin using the air conditioner. But it's only the middle of March! Anyway, being kind of tired might have contributed to the way I felt today.

Mostly I just felt off. Weird. Sometimes my heart seemed to beat faster. Sometimes I had to work to pay attention and process the world. But there were hours where I felt okay. Not normal-okay, but at least everyday-MS-okay.

I had a pretty good PT session. Mostly I rocked it all, except when she wanted me to work on balance with my eyes closed. She must have needed a good laugh.

I have a weird headache. Above my right eye, directly underneath my eyebrow, toward the inner side of my eyebrow. Now it is right above my right eyebrow, more toward the outer side. (NEW SYMPTOM, or at least hasn't been around for a while)

And my tongue went partially numb this afternoon. It has not come back. (NEW SYMPTOM, or at least hasn't been around for a while)

Ugh, I am so tired. Let's do this thing.

Sensory:

-Pins and needles: 0
-Tingles: 0
-Dysesthetic pain: 2
-Paresthesias: 1

-Numbness: 2
-Vision: 0-1
-Nerve pain: 1
-Hearing: 1

Motor:
-Walking: 1
-Sore muscles: 4

-Spasticity: 1
-Weak muscles: 2

-Endurance: 4

-Fine motor: 1

Cognitive:
-Processing: 2
-Memory: 0
-Attention: 1
-Confusion: 1

General:
-Fatigue: 5
-Balance: 1

-Vertigo: 0

-Sleep: 5, about 7 hours, not all together--I woke up many times, just briefly each time. Then I could not go back to sleep after 6:00 am.

-Bladder: 1, medication
-Proprioception: 1
-Swallowing: 1
-A: 2
-B: 0

Emotions: Today I began reading The Feeling Good Handbook, which my shrink recommended. I like it so far.

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.