Anxious!

I am so anxious right now. I was fine all day, but this evening I got anxious again. I think I am stressed about several things.

- My mentally ill sister
- Painting and moving
- Money
- Sleep!

Ever since I started having trouble sleeping again, I have been getting more anxious. And of course it has been worse since my sister went off the deep end.

I am anxious that my sleep problem will continue. Right now, I am able to sleep about three hours on my own. With 10 mg Ambien and severe exhaustion, last night I slept four hours straight, woke up, and went back to sleep for two more hours. I would say that it was four hours from Ambien and two hours from exhaustion. But I cannot use Ambien every night.

Nevertheless, today I picked up Ambien CR (at no small expense... holy cow), which is suppose to help you stay asleep. My prescription is for 12.5 mg. I will try it tonight.

Using Ambien only makes me more anxious. I am planning to use it tonight but not tomorrow night. I guess I will see how I feel tomorrow night. First night in a new room. It is hard to decide between getting enough sleep (even if it means medication) and not becoming dependent on medication to sleep (but possibly not sleeping well and getting sicker). For now, I would like to take medication some days and risk it on days when it is not totally crucial or when I have had enough rest the night before. The problem is that when MS is acting up, every night is crucial.

One thing that makes me anxious about sleep is that I have no control over it. Sure, I can try to "turn my brain off" and just stare at the darkness inside my eyelids, but when my brain is not able to sleep, no amount of effort can make it. Doing the same thing might be successful one night and not the next. I can have great sleep hygiene and identify everything I think might be bothering me yet still not sleep. Other times I can be extremely stressed out but sleep fine.

It is the same way with other MS symptoms. I can be really busy and do okay, or I can be wiped out after an hour. Or before I start! I can forget my medicine and not have pain, or I can be hurting and wondering if my medication stopped working.

Well... I cannot be really busy all day and be okay. But the variability is confusing. It makes me doubt myself.

Today I had a pop-fzzt in my right ear, followed by a sudden decrease in hearing accompanied by increase in tinnitus, which got better over few minutes. The pop-fzzt sounded kind of like a match lighting or sparkler lighting. I have not had that in a long time--maybe since last summer. My tinnitus has been up and down since then but no fzzt or hearing decrease. It was not much; I would guess 5 dB.

Wow, sleep really was the biggest thing bothering me. Just now when I thought about the four stressors I listed, I do not have a tense feeling thinking about my sister. Painting and moving, kind of, but I do think it will work out tomorrow. Money... well, yes, but not the tight/hot feeling in my chest like when I began writing this. And sleep? I have changed my thinking about it. I realized that for now I need to take the medication, I can keep trying without it, and it will wax or wane no matter what I do.

[Lack of] Sleep

Here is what my night was like:

10:00 lights off

10:30 sleep (on my own, after 30 minutes--this is really good)

12:30 awake

2:45 still awake, take an Ambien (although mere mortals would not dare to take Ambien past 11:00 pm, I know this it will not last anywhere close to 8 hours for me)

3:30 back to sleep

7:00 awake

7:30 back to sleep

8:15 awake, back to sleep

9:00 awake, back to sleep

9:30 awake, got up

Thank goodness for a day off, so I could sleep in. If not, I would have gotten up after the Ambien wore off, having a total of 5.5 hours of sleep. Which is like -100 for a normal person. The only reason I could fall asleep on my own after only 30 minutes is because I had four previous nights exactly like this.

Yesterday was similar:

10:00 take Ambien

10:30 fall asleep

12:30 wake up (right after two hours! on Ambien!)

1:00 back to sleep

2:00 wake up

5:30 still awake, take Sonata (which helps you fall asleep but not stay asleep)

6:30 wake up, back to sleep

7:30 wake up

Not pretty. What is that, 5 hours? That is like -200 for a normal person (it is on a logarithmic scale, as near as I can figure).

The previous night was similar. The two nights before that were worse, because I did not take sleeping medicine. On those nights, it took more than two hours to fall asleep in the first place. And I am absolutely exhausted when I go to bed. In fact, I am absolutely exhausted and barely able to stay awake after 6:00 pm.

Yesterday I got scared, because it has been several nights in a row, and I was getting sicker. My motor skills are worse, my brain is not with my at all, and of course I feel horribly. Fatigue does not begin to describe it. My temperature regulation is way off.

I have no idea what happened. I had sleeping problems like this for almost four weeks straight, which began suddenly and ended suddenly in July and August. So... Why is it back? Well, I am going through a period of stress, which began on Saturday. I wonder if that is a coincidence. But I think the worst of the stress is over, and my sleep problem is not.

Maybe it is the weather change? But I do not think it is warmer upstairs. You would think that it would get cooler in the fall, but not necessarily. I use the air conditioning, which is based on the downstairs temperature. If the downstairs temperature is lower, the air conditioning does not turn on, but it may still be needed upstairs. I have it set pretty low, at 66 degrees. The problem with my air conditioning is that it does not hold a temperature well. I am always amazed in some homes where the AC goes on and off frequently to keep the temperature steady. Not mine! It lets the temperature vary by several degrees downstairs, which could mean as much as 8 degrees upstairs. So it is usually too hot or too cold.

But again, I do not think it has been that hot upstairs. Not hot enough to keep me up all night. I do not feel anxious until about 5:00 am, when I realize that it is not possible for me to get a decent amount of sleep. Then I get anxious. But that is a result of the sleep problem, not a cause of the sleep problem. 

Maybe I am anxious and cannot feel it?

What I do feel is miserable.

Yesterday I emailed my neurologist to let him know what is going on and to request Ambien CR, which is supposed to be longer lasting. He called it in after the pharmacy closed last night, but I will pick it up today. If I can afford it, that is. No generic. I hope it does not cost more than $35. And I hope he prescribed a full 30 days' worth. If he did not, I will leave it at the pharmacy and ask him to call it in again. If I am going to buy a medication, I want my moneys' worth. 

My neurologist recommended that I see a sleep specialist. That is perfect, because I ASKED FOR A SLEEP STUDY 6 WEEKS AGO. At least we are on the same page now. I mean honestly, if I only get 2-4 hours from Ambien, there is something wrong. My brain is waking me up--strongly. 

Yesterday I called to make appointment with a sleep specialist, and I had to leave a message. The machine stated that I will need a referral, that they would fax paperwork to my physician for him to fill out before I could be seen. Hopefully they are doing that today. I think I will call...

Amantadine

I took one amantadine (I think it was 100 mg) yesterday. I am not sure it did anything. I certainly did not have ill effects from it, so that is a positive. I meant to try it today but forgot. Maybe tomorrow. If I can make my brain work! I would put it in my morning pills, but I am too tired.

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.

Yet Another Nuvigil Test

Today was similar to the last time I took Nuvigil. Maybe a little better.

I took it at 7:00 am. The morning was not bad, with enough energy to work (mostly sitting, admittedly). I had dry mouth and shakiness. I had to have something in my mouth all day, because the dry mouth is so uncomfortable, and it makes my throat hurt. And it keeps me from being able to talk much. Oh, and I had no appetite, but that is not totally undesired. As long as I remember to eat.

Around noon the anxiety started. I was trying to analyze it, because it is not what I think of as anxiety. Not heat in my chest. I think it might be panic. Or maybe just more severe anxiety than I have ever felt.

Around 2:00, the fatigue started. But it is different than my usual MS fatigue. It is a special MS-Nuvigil blend, I guess, because it has the anxiety/shaky flavor to it. Still some dizziness with the fatigue, but not as much today.

I still have that feeling, so I am thinking about it. I am getting more and more tired. My eyelids and my head are heavy. But I can still sit up. I feel like I want to scream, writhe, scratch myself, something. Maybe that is from panic? I feel like I am white knuckling it ("it" what?). I feel something weird about my skin--oversensitive? And I am getting a headache now.

My body becomes harder to control as the day goes on. I think it is the shakes.

Leaving work at 4:00, I had the usual decision of "Should I park nearby and rest?" Of course I decided to go straight home, which is what I always decide. When I got home, I was too tired to cook. But I did not have to push to make each step from the car to the house.

I never know how my day would have gone, so it is always hard to say how much this drug helps. I think it did help me have more energy. I usually get more dizzy in the afternoon, have more difficulty getting up and walking, and cannot sit up after work. Would today have been a good day anyway? Who knows.

I would not want to feel this way every day. But I also do not want to feel my MS fatigue every day. The fact that this is a hard decision, despite the side effects and still not feeling terribly energetic, says something about how miserable that MS fatigue is. I am actually considering whether shakiness, anxiety, panic, dry mouth, and the skin thing are worth the small improvement in energy.

I just hope I can sleep tonight. It seems like it wears off after 10/11 hours--I am going downhill fast now. But last time I had the dry mouth until past 1:00 in the morning, so it was still affecting me.

Hm, the skin thing. I do not know if it is skin exactly. I feel like I would like to be squeezed, so maybe I will wrap a blanket tightly around myself. Hm. That makes me think of kids with autism, how they like to be squeezed or squished. Sensory seeking. Maybe it is my sensory system.

A Pile of Crazy

I am still sick. This flare has been so nasty with the fatigue. The vertigo has gotten better, but I am still dealing with trigeminal nerve pain around/behind my right eye, shy bladder, weakness in my right arm, and weakness in my left leg. My walking is worse. Stairs are getting pretty sad!

My left leg is so much worse today. Spastic, painful, weak. I thought it was going to give out on me.

My left ear is getting better! No stabbing today for two days, just aching. However... Over the weekend, my right ear got sore. It has not gotten to stabbing, but when I realized there was junk coming out of it, and the junk smelled nasty, I started putting drops in that ear, too. I did not even go to the doctor. I was not about to miss work and pay $35 for it. I know the clinical study would like me to do that, but they will have to get over it.

Another issue is my idiot brain. My brain is seriously so dumb lately.

Case in point, I ran out of my reflux medication a week ago. I looked for a new bottle but could not find one. So... For some reason, I did not go to the store. I thought I had gotten the medication and lost it. I did not know what to do about that, so I did nothing. It took a few days for the lack of medication to affect me, but by Friday night I was really feeling it. I am ok as long as I am sitting up, because the problem is hiatal hernia. If I lie down, my stomach acid spills right out into my esophagus. Saturday night I had some trouble falling asleep. Sunday night I took two hours to fall asleep and then woke up every hour or two. No!! Not again!! Then last night I took four hours to fall asleep and woke up every half hour. I got four hours of sleep... not four hours straight: four hours total.

The problem with not sleeping enough is that it makes my brain dumber, and it makes my body not work as well. Bad cycle.

I was sort of unmotivated to take the reflux medication, because it is a strong drug--I did not respond to several other meds. Figures. I have been on it for three years, and I do not want to take it forever. My internist wants me off it. But the esophagus is not made to hold stomach acid, not to mention what happens if it escapes the upper esophageal sphincter to heads into my lungs. I looked up YouTube videos on how to cure hiatal hernia. I think I can do it, but it might take time.

Meanwhile, I need to sleep. I decided to renew the medication. Hope that I was remembering wrong and had not already gotten it and lost it. Beg the pharmacist to give me more.

About 5:30 this evening, I remembered the medicine. Problem: I could barely walk, and I was exhausted. My best friend asked if I wanted her to drive me. I could not decide whether to go or just forget about it for another day. (Idiot brain, see?) While I laid there trying to make my brain work, trying to understand the choices and the consequences of the choices, my friend got my shoes and pulled me up. So I went to the store... and found that I had called in the prescription 8/31 and had not picked it up! I guess my brain was dumb then, too.

But I am not sure the reflux was the only barrier to sleeping. Maybe stress, too? But not being able to sleep makes me stressed. I sure hope I can sleep tonight. Of course I took my reflux medication the minute I got it, but I think it takes a few days to work. I cannot remember--I have missed maybe two pills in the last three years!

Sleep... I need sleep...

Oh, church. I was able to handle the piano thing better. Of course, I prayed. Things went much better, because the regular music leader was back, and she loves to talk. I think she also loves to sing, but she definitely likes talking better. That worked out great for me.

I forgot to bring a pad for the bench. Hard surfaces increase my pain and can make me lose feeling in my left foot. So every surface in the Primary room is out. Maybe I will bring in a chair from the RS room. Or maybe I will just rest on the floor--that is what I did last Sunday. After I had recovered from music time enough to get up. All that effort made me tired and dizzy, so I just closed the piano and put my head down after singing time. It was nice. I am back in a corner, so no one is paying attention.

I tried Nuvigil again yesterday. That might have something to do with my sleeplessness last night. I don't know. I was exhausted by 8:00 pm, so I am not sure. I made notes on the day. Data! Since my brain is so dumb, I need to make a lot of notes if I want to remember things. It does not matter if it is something I am really interested in or was really good or bad, I may forget.

9/10/12
9:15 am: Took 250 mg
10:00 am: Felt a bit more energy
12:15 pm: Dizziness began (maybe my usual fatigue?), heaviness--fatigue
12:45 pm: Came home to rest
1:00 pm: Dry mouth began, continued until
2:00 pm: Anxiety began. Feeling of heart racing sometimes but not sure it really was.
2:30 pm: Back out to work. On edge with anxiety.
3:00 pm: Still have somewhat more energy than usual BUT legs tired, harder to walk. Shaky/jittery feeling, esp. hands.
3:30 pm: Anxiety worse, dry mouth worse
3:45 pm: Home again. Can't do any more--feeling shaky, tired/heavy limbs. Still anxious but tired at the same time. Feel like I want to cry or freak out, no particular reason.
6:00 pm: More tired
6:30 pm: Headache but not as bad as last time
7:00 pm: Feeling much worse. Dizzy, fatigued, a little nausea--wearing off and I'm feeling "normal" again?
7:30 pm: Dry mouth a little better. Fatigue worse.
~1:00 am: Dry mouth went away
*I was able to move around more to follow my students. But the difference was not marked. The anxiety was not constant--it waxed and waned from 2:00-6:00. No hunger again today but I knew to watch the clock for when I ought to eat. Ate lightly because not hungry.

So I have to decide if Nuvigil badness is better than the usual badness. The jury is out. Plus there is the risk of dependency--addiction scares me. But I am going to try this drug again on Thursday.

Clinic appointment this Friday. Nine months on the drug. It is absolutely not working, but I remain hopeful.

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!

Bright Beads

I have not have vertigo since Saturday afternoon! I hope I am coming out of this.

On the other hand, I am losing more sensation in my fingers. And the pain in my legs and feet has been intense.

I got another calling yesterday, which makes two plus visiting teaching (letter route, because my RS Pres understands my situation), plus my demanding un-calling of interpreter. But it was sort of a trade. Play the piano in Primary instead of interpreting in RS. 

Primary pianist is one of my favorite callings, possibly my very favorite. You show up, be with the kids, do music, do not need to manage behavior. Primary music is a piece of cake to play. I was a little concerned with the effort it would take to sit up on the bench. That turned out to be a little hard but definitely manageable. What I did not expect:

-It was difficult to read the music. Music is like language. My brain has lost so much ground with information processing. I got mixed up sometimes. I had trouble decoding the notes fast enough to play them. 

-It was extremely difficult to keep my arms up and move them around quickly. I was dragging behind the chorister, working as hard as I could to keep up. After the first song I was tired, and after the second song, I was exhausted. I barely made it through music time.

-My hands did not have the instinctual correctness they once did ("once" being about a year ago). I think it was a problem with proprioception, knowing where your body parts are in space. When you play the piano, you look at the music, not at your hands. You come to know the distances between the keys. Some of my mistakes were because my hands thought the note should be in one place, when it was really the next note up or down.

So it is not a piece of cake anymore. I cannot believe how much I have lost in such a short time. I still hope I was regain my skills and my health, but as time goes on, it seems less likely.

I will pray for help to manage that calling. I do not want to give up on it after one try. And I love music! Before church, I heard the choir practicing and longed to join them.

Today I am having a good day. I dragged out to yoga this morning. It was so hard! My left leg is still weaker than my right, and it often feels like it will drop me. But I push, push, push through. Not to pain! Yoga teachers always say to find your edge and not go over it. But I usually do not have to worry about pain, because I am pretty flexible (they call it "organic"). Weakness is what I have to be careful of.

My yoga teacher read a quote about life being like a string of beads. Each day is a bead. Many are beautiful, brightly colored. Some are cracked with crisis. Some are cloudy with grief. But when you look back at the days, examine the string of beads, you can say, "I love my life." So that was the theme today. This particular teacher happens to be my favorite, because she selects great poses, and she has a great outlook on life. And yoga. When we are ready to drop, she will say, "Now joyfully extend your leg." Or, "Ready for the other side? Yes, Kathy, we can't wait." She answers herself with what we should say, which is funny. But the willingness and the joyfulness makes an impression on me.

Despite how hard it was and how often I nearly collapsed, I felt better after my yoga class. The 10-minute savasana helped. But the pose sequence and the spirituality really helped. It is odd that I feel so much more refreshed, calm, and strong--physically and emotionally--after yoga than after church. Maybe we should have savasana at the end of church. ;)

Today is the bead is kind of cloudy but at least not cracked. Looking at my string, most of the beads are bright and colorful. But there have been about 400 cloudy or cracked beads in a row. I hope that when the string is complete, there will be so many bright beads after this that it will not matter. Or maybe they will all be cloudy after this, and it still will not matter. Maybe cloudy is just a different kind of beautiful.

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.