First Days on Cymbalta

Cymbalta has been a little rough. Insomnia breaking through the Ambien, anxiety, lack of appetite, and a touch of nausea. The nausea has been better today. I decided to take the pill in the morning instead of at night, hoping that helps with the insomnia. So I will skip it tonight and take it tomorrow morning.

The anxiety yesterday morning, following the first Cymbalta dose, was insane. No letup from 6:00 AM to about 9:30 AM, off and on after that. It has been tons better today. It hits, but not as badly. Experiencing this anxiety was not enjoyable--I get nervous about things sometimes, but not anxiety like this. It reminded me of Nuvigil, but the anxiety with Cymbalta lasted longer.

My doctor called and emailed yesterday to encourage me to go to the ER. No thanks. I have been sick for weeks--why now? Only because I said that I want to kill myself. I do not see what they could do in the hospital that my doctor cannot do by calling my pharmacy.

I got diagnosed with a yeast infection today. Bad one. I am totally blaming this on the cipro I took a couple of weeks ago.

If I can get over the insomnia, Cymbalta might help. I really want to give it a good chance, because there are not many options left for my burning pain. Well... basically none. When I spoke with my nurse on Monday, she asked when my sleep study is. Oh, sleep study? I do not have one scheduled! Just a consultation! Three more weeks until that.

Last night I took Ambien CR, woke up three times, could not go back to sleep after 6:00 AM, took 10 mg of regular Ambien at 6:30, and got up two hours later. Two hours on 10 mg of Ambien. Most people get eight hours. Even I usually get three to four hours on that dosage. Cymbalta definitely affected my sleep both nights. Hopefully tonight will be better. My sleep problem is bad enough already!

Thrust In Your Sickle

When I have not blogged in a while, it usually means things are really good or really bad. Things are not good.

Let us discuss death. Just entertain the idea. It sounds so good. The problem is that there is no fool-proof method. Chances are good that I would end up hurt but not dead. I already know that situation sucks.

I contacted my doctor and nurse last Wednesday to let them know that I have suicidal ideations, as my shrink advised. On Friday, Alyssa emailed to say that she was sick with pneumonia and hoped Dr. Rick had contacted me, that she hoped to be well enough to return to work Monday. Basically I told her whatever. What if you felt that way every day and had to work anyway? Maybe it was not fair, but I am having trouble feeling sympathy for normal people who get sick. They are sick temporarily, and there is no way it is as painful as my everyday pain. Whatever, I have anger issues lately. I blame it on the grieving process. It has been a year, and I have felt denial, bargaining, depression, and sometimes even acceptance, but this is the first time I have felt anger.

Alyssa called later on Friday and left me a message that she had sent several messages to Dr. Rick, and that she understands that I am dealing with a lot. Dr. Rick called and said to increase my tramadol to 50 mg (it already is! he seemed to think 25 mg), and he offered Cymbalta. Basically he said have a good weekend.

Ugh, yes, he called right before he left for the day. And I missed his message by minutes. Figures! Today Alyssa followed up with me. She said how she is worried about me, that I am not doing well, that she and Dr. Rick discuss me. I wanted to say That is nice, but it does not change anything for me. Alyssa tried to figure out how serious I am about dying and if I have a plan. And she called in my Cymbalta prescription (which turned out to be unreasonably expensive, just like Ambien CR).

Alyssa said that if the pain is bad enough to die, I should go to an ER. They could admit me and get the pain and "mood" under control. What do I look like, a sucker? An ER is not going to help unless you have a bone sticking out somewhere. Besides, pain and psych admissions sound like a great way to ruin a career. Maybe I would consider it for pain--I had never thought of that before. Hospitals are for really sick people, not me. But I think maybe I am really sick. However, I would never go to an ER if I wanted to kill myself. Duh, suicidal people do not want help. Going to an ER saying that you want to kill yourself is probably attention-seeking behavior.

Ah, here is something different: for the last two days, my left ear sounds crackly when my eustachian tubes open. (Yes, I know when my eustachian tubes open.. because I am that nerdy.) But it does not hurt. I suppose that I have fluid in my middle ear, but it is not infected. I do not think it is affecting the rest of my health, because my pain has actually been better the last four days. It is down to 7-8 a lot of the time. Right, that is a reduction!

Seriously, the thought of tomorrow is too much sometimes.

By a Thread

Gosh, the days are hard. People talk to me at work, and it is overwhelming. I just want them to slow down.

Sometimes I get anxious when I am sick and someone asks me to do something extra. I feel like I am barely making it, and I will drown if I have to do more.

Walking is becoming harder; in the afternoons I cannot hide the struggle. I walk slowly and try to look like I am just not in a hurry, concentrate on making my left leg catch up, remember to smile.

I wish I did not need to work. It makes me sad that I only have one good day: Sunday. Working Monday-Friday, sick with Avonex on Saturdays. I guess I really have half a good day, because Sunday afternoons I work at church. Then I have to recover.

I do not understand why I have gotten so bad in a relatively short time. A year and a half ago I was fine.

Sensory-Friendly Clothing

With this horrible, burning pain, my clothing really hurts. I wonder if this is what kids with autism feel like when they complain that their clothing hurts. Many of them cannot stand seams or tags.

Seams are painful, and most textures are torturous. Any degree of pressure or binding is out. Thank goodness for my Life Is Good creamy shirts, which are extra soft. Pants are tough, because they all have seams. I do have one pair of dress pants with silk lining, so I have been wearing them, but they still create pressure lines. I bought new sweatpants, because I had nothing to wear around the house. One pair of thin pajamas do not hurt. And I had no jacket that did not hurt my shoulders, so I bought a new one--amazingly, I found a peacoat-cut sweatshirt. I never thought clothing could be this complicated!

So... I remembered that some kids I took care of many years ago had comfortable pajamas from a Scandinavian brand. After some googling, I found the name: hanna andersson. And they have women's pajamas with flatlock seams. Score!

Finding sensory-friendly clothing is hard and expensive. But with soft, comfortable clothing, my pain level is sometimes sub-suicidal. And so I close my eyes and hand over my credit card.

Grumpy

This pain makes me so grumpy! Pressure on my skin or bending my body (like bending my arm) makes it worse. It hurts to sit back. But I am tired, because I still have fatigue! I tried to lie back and use my computer (with a blanket to pad my lap... less pressure...), but the back of my arm was hurting more from leaning it on the couch. This afternoon I had a long meeting, nearly two hours, in a chair that sent my left foot over the edge. I was getting tired from the cognitive drain and the pain. Working with kids and families is better--distracting. In small doses, so I can collapse in the car!

I pray for relief from this pain, and I think it helps. Most of the day I was fine emotionally, but sometimes I got very angry.

I am so ready for this flare to be over.

Answer

I got my answer. While I was praying about being disappointed at not getting an answer during Conference!

On Fire and Out of Spoons

Today I have been in severe pain, and I have gotten angry a few times. In the last few days, I have been angry a few times with my nurse and doctor. It is irrational, but I am angry with them because they are not sick. They do not know how it feels, and I wish I had a doctor with MS.

I have been watching General Conference. I asked a question beforehand and hoped for an answer, but I did not get one. Or I did not recognize one. It is disappointing to have to wait for it or maybe never get it.

Oh man, this pain is so bad. Here are some ways I could describe it:
-A terrible sunburn--but aloe does not help
-A bad rug burn
-Boiling oil poured on my skin

Today it is on my feet, lower right leg, knees, thighs, hips, butt, lower back, lower stomach, right shoulder, arms, and hands. Touching makes it worse. Even clothing makes it worse.

I googled how people live with pain, but of course very few people have this kind of pain. A lot of people with MS have it, but that is a small portion of people in general. Most people complain of musculoskeletal pain, and I try to sympathize, but that kind of pain does not hold a candle to this. I know--I have had back pain since I was 12. Considering where I would place my burning pain on a scale of 0-10, I was debating whether this or kidney stone pain was worse. And I could not decide. But I did decide that I would rather have another kidney stone, because at least the pain would end.

Although I did not find an answer to my question, I stumbled on a great analogy for MS. It was written by a girl who has lupus. Some of her symptoms are different than mine, but it is similar enough that the analogy works great. Go here and read it. Twelve spoons are more than I have had in a long time, but you will get the idea.

And then read this.

Milestone

Today at work, I was leaving a room, walking through a little hallway with a coworker. As we entered the larger hallways, she asked, "Are you okay?" I was like, "What?" I really did not know what she was talking about. She said, "It looked like you were having trouble over there." I nonchalantly said, "Oh, sometimes I lose my balance."

That was it, she did not ask more or seem terribly concerned. I tried to project calmness.

Funny, now that I think about it, another coworker asked the same question after a meeting a few weeks ago. I got paranoid and asked why. Then we got interrupted. I wonder if she saw something or just knew that I had been sick a few years ago. My first MS flares, although I did not know what they were at the time. I do not get to talk with that coworker often.

Anyway, so I guess today was a milestone--someone noticing a physical problem and commenting on it.

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.

Need. Sleep.

Today I felt the most sick I have felt in a while, probably since the last time I was on steroids. Well, the last time I had a full course of steroids--the one day in July does not really count.

Last night I slept an hour, woke up, another hours, etc. All night long! But on the positive side, I fell asleep in less than an hour, and I went back to sleep within 20 minutes each time. Part of the problem was that I was hot--still trying to figure out the temperature setting that will work now that I am downstairs. But part of it was just me, sleeping shallowly. At least I am out of the "take two hours to fall asleep, sleep two hours, and feel totally awake the rest of the night" habit. Hopefully things are moving in the right direction, as my nurse likes to say. But I am still exhausted, feel SICK, and want to cry. Maybe I should, because it often helps. Crying and eating sometimes help.

I do not sleep when I am on steroids, so maybe that is why I feel similarly to those times.

My morning was terrible, the afternoon was more bearable, but then I have gotten worse again since getting home from work. Thank goodness I had rides today. This morning I absolutely would have stayed home if I had not had a ride. But I enjoy going to work, absolutely adore my students, so I want to be there.

I have not heard anything from the sleep clinic! I will email Alyssa to see if Dr. Rick has filled out the referral paperwork. Or if he has even received it.

I guess I had better take Ambien again tonight. I can go without it tomorrow night. Ugh, except that tomorrow is my shot day, and I want to sleep through the side effects. There is never a good time to miss sleep!

Temperature Processing

For about two weeks, I have been taking an herb called Vitex, aka Chaste Berry, aka Vitex Agnus Castus. I am taking 400 mg three times daily.

It has really helped with my temperature sensation. I have only gotten hot once in the last week, which was yesterday, when I really overdid it. I walked about a store with my friend for two hours. I did sit down sometimes (yes, on the floor--that is how tired I was), but I was on my feet a lot. Hanging on the cart, ha.

So that was the only time I have been hot. And many times I have been COLD. This is so unusual for me this past year. I used to be cold most of the time, but since my MS hit hard, I have almost never been cold. I mean, we are talking outside in 30 degree weather in a tee shirt and not cold.

Vitex is supposed to cause the body to make more estrogen. I chose to use it after realizing that researchers have concluded that estrogen probably acts as a natural steroid, calming the inflammation of MS. I did not expect it to impact my temperature processing. That was an unexpected boon!

Less Burning and I Might Be Crazy

My burning pain is a lot better today. More like a 7 level, sometimes 8.

I am still taking Ambien CR. It took me an hour to fall asleep last night even after taking Ambien! Part of that was because I had a good 30-40 minutes of strange psychological symptoms. I felt like I was small and thin, folding up like a piece of paper or a crack in the wall. Everything felt big and thick, swollen. And too far then too close. Intense. And I had some vertigo--even with my eyes closed! It was hard to sleep, because I was scared of the way I was feeling. It was overwhelming. I am not sure if it was the Ambien, the antibiotics (which are known to cause psychological/psychotic issues), or what. But I remember having that problem as a child sometimes and the last time I took steroids. These people have had the same thing.

And... I have a yeast infection. Seriously, when it rains, it pours.

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.

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.

Nuvigil Trial, and Not Suicidal

Although I had a bad reaction to Nuvigil last year, I got permission from my neurologist to try half a pill today. My fatigue is just out of control. Nuvigil is basically legal speed. Kind of like Ritalin, I guess. Well, I did not have a bad reaction to Nuvigil today. I am not sure it even worked. Maybe I should check the expiration date. It is a sample pack that nutty Dr. Gabby gave me a year ago.

I had a so-so morning. Not good but not terrible. However, I was sitting down giving tests most of the morning, and I was in my own classroom.

I got worse toward the end of the morning and continued to decline all afternoon. At one point I stood and talked to a colleague for about 10 minutes, and I seriously felt like I might pass out. I was dizzy, had occasional waves vertigo, even some nausea in the afternoon. I have rarely had problems with nausea with my MS fatigue, but I know others do. That was not fun. But vertigo is worse.

My left foot is worse today.

When I had to go up to the office toward the end of the day and meet with my boss, I guess I used up all of my energy to walk normally and explain things to her. After that, I was pretty well spent. It is hard to describe how poorly I felt. Feel. I have only been home for 30 minutes, so I am not even close to recovering. Still feels like my head might fall off.

I am so frustrated. There are many things I enjoy and want to do, but I cannot do them. Being sick every day is horrible. MS fatigue is horrible. I had no idea a body could feel this way--and I have had gallbladder attacks and kidney stones. MS fatigue is worse. At least the gallbladder attack eventually ends, and the kidney stone eventually passes. This MS thing is not going away, and it is getting worse, not better.

We work every day to eat, be clothed, buy things we want, have a home, etc. It is worth spending many hours each week doing something we do not want to do (generally speaking) in order to do things you want to do sometimes. On the weekends. In the evenings. Everyone has to decide how much "not fun" is worth "fun." Some people want to work just enough to have a modest home and stay mostly out of debt. Others are willing to work 80-hour weeks to have a nicer house or drive a fancy car. The cost-benefit analysis is a personal thing.

I wonder whether it is worth living this way, only feeling alright occasionally. And rarely, so rarely, feeling good. If I thought this is it, that life ends with death, I would think that it is probably worth it. Maybe. But I already have my calling for the spirit world, and it sounds great--a whole lot better than what I have going on here.

I am not suicidal; I just want to die.

Relief!

Although I had another hard day, one thing made it a bit easier to bear. When I got there, my favorite coworker, a great friend, made a beeline for me and said she had solved my heat problem. I asked how, of course. We had spent a lot of time discussing that problem on Monday, and I really was not sure what to do. Although that teacher is a nice person, she seemed to have strong feelings about keeping her classroom hot.

My friend said that she had sat down with that teacher and said, "Someone on our team has heat intolerance. When she is hot, she becomes physically sick." The teacher immediately said that people can turn the temperature down in her room any time.

What a relief! I know that Heavenly Father answered my prayer through my friend. Although my day was still insanely difficult, and I feel just awful, keeping the temperature reasonable helped my cognition and emotions. I did an awesome job troubleshooting a little darling's hearing device (got it working!) and teaching my sweet children.

This Is MS

I decided to do a "day in the life" post. Yesterday was a completely typical day, so it will be a good one to write up.

I slept ok, just woke up three times or so. After at least eight hours of sleep, I got up at 7:15 AM, tired already.

Although I planned to leave the house by 8:15, it took me a long time to get ready. That was because I kept forgetting what to do next. And I needed to take a couple of breaks, because I was so tired. Yes, showering (lukewarm, due to my heat intolerance), drying my hair, and putting on minimal makeup wears me out. Before MS, this routine took 30 minutes. Now I am lucky to get it done in an hour.

Holding onto the rail with one hand and firmly pressing my other hand into the wall, I slowly went down the stairs. My roommate made me breakfast, since I was running late. That happens pretty much every day. As I ate my toast and took my medicine (12 pills), I realized that I needed to use the bathroom. When I need to go, sometimes I need to go NOW and cannot wait. This was one of those times. Unfortunately, I also have a problem called hesitancy, where even though I have to go, I cannot. Wait... wait... wait... Don't want this to hit in the car... Finally! I again went slowly and carefully down the stairs and left the house at 8:40.

I got to work just before 9:00 and parked in a handicapped spot. A coworker who does not like me very much was at the door when I came in. Great. My legs were already tired from walking to the building, but I forced myself to continue on, dragging my wheeled cart behind me. A coworker/friend, who noticed my difficulty lifting my laptop bag, bought the cart for me a few months ago. So sweet.

I trudged to the back of the building. As I pushed open the doors to the area where I work, I was greeted with stale, humid, warm air. That was how it was last week, so I started worrying about how I would get through the day if it continued that way. I hoped it was because the system was just getting started.

At 9:10, I went into the general education classroom to guide my special ed students through their first day. The temperature continued to rise, and my energy level continued to drop. I felt dizzy and fatigued. I was having trouble thinking and paying attention.

By 10:20, when we dismissed the students to another class and I left that room, I was really worried about how the day was going to go. I went up to the assistant in a nearby room and asked, half-jokingly, "Who do I need to bribe to get some AC around here?" She looked confused. She said, "It's on, can't you feel it here in my area?" I could, now that she mentioned it. I told her the AC was not on in the other room. She told me that was because that teacher always turns it off, because she likes it hot.

I was so confused by that point that I was not able to respond to her. My brain was having difficulty processing information. My body was so fatigued that I needed to sit down. I went into my office and plopped down at my desk. Despite having the AC on high, it was 73 degrees--my borderline for having symptoms worsen. And that is when I am just sitting around; if I am moving and working physically, I need it more like 70. The lower, the better.

I overheard the assistant talk to that teacher when the teacher returned a few minutes later. I went out to where they were. The teacher said that the AC certainly was on. She was lying. The assistant went over to the AC controls and said that it was currently 75 degrees and the AC was on hold. The teacher said that she must have put it on hold last winter, because it was too cold in there. Um, right. I said that today it was too hot, that I hate sweating while I am at work, and that all the other adults in the room were too hot. (There had been five of us, and everyone had complained about the heat except her--but I was the only one who was physically getting sick from it.) The AC was turned on.

I had to use the bathroom twice that morning, which involved walking to another end of the school. It almost did not seem worth it. Adult diapers are looking better every day.

At some point, a coworker/friend shared trail mix with me. I was so grateful. If I had been thinking, I would have remembered that I had brought two snacks from home.

By noon I was ready to cry from fatigue--when I get overtired, I tend to cry. But I held in the tears. Just after noon, I had another break. By this time, cooler air was coming out of my AC unit. I took more medicine (2 pills). I dragged myself down to the kitchen to warm up my food, dragged myself back to my office at the back of the building. I ate lunch with some coworkers. I had to work to keep up with conversation. My brain was still not working well. I had to work to get my fork to my mouth. My body was still not working well. I made sure to smile and chat like usual, which took energy that I really could not spare.

At 12:45, I had a meeting with my boss and the coworkers who does not care for me. By this time my brain had recovered, and I had enough energy to move from my desk to another area of the room to meet with them. My boss was being a bully to a coworker, as usual. A few times I was able to think of a response to defend that coworker, but usually my boss was deliberately obtuse. Whatever.

At 1:30, I went back into that classroom where the AC had been off... to find it off again. The temperature was rising again. I wanted to lie down so badly. Within 10 minutes, my head felt so heavy. I stayed in there until 2:30, when I took kids into my room. The whole hour in that room was torture, because I felt so sick. I felt like I had a flu. Heavy head, heavy limbs, fatigued, hard to think and make decisions.

From 2:30-3:30, I worked with several multiply handicapped children. At least it was in my room, where the air was on. It still said 73 degrees, which is where the unit is set. I need to ask someone how to get it set lower (it is locked, unlike the one is the crazy teacher's room), but I am always either too tired or forgetful to get that done. Using two languages, I worked with my disabled students, managing behavior (one child sat in the thinking chair twice for hitting me--although to be fair, he was calling me "mom," so I don't think it was personal) and trying to keep their attention using big facial expressions and body movements.

At 3:45, the kids were gone and I was so ready to leave. But I was exhausted. My left leg was doing its burning thing, and my right big toe was going numb. My left foot felt like a combination between pins/needles and electric shocks. My right arm was weak. The tips of my fingers were a bit numb.

I dragged myself to the bathroom again. I lost my balance a couple of times in the bathroom--not falling over, just balance checks. I washed my hands in cold water, because I could not handle the thought of heat on my body.

The striking thing about all of this is that only one person at work knows about my MS. No one else has the faintest notion that something is wrong with me. Because don't I look so good?

I went back to my room and packed my things. A colleague caught me and started talking. I love her and wanted to talk to her, but I knew that I needed to go home.

But I did not want to be rude, so I stayed and talked. I ate a snack while we talked, trying to keep my energy up. Several times I said that I needed to leave, but we kept talking. Work stuff. Problems to work out. That only made me more tired. I was holding back tears. When we finished talking, I was not sure I could leave. My legs were not cooperating. Even sitting up was hard. Weakness and fatigued had combined, multiplied. I pushed myself up with my hands and used all of my energy to put one foot in front of the other.

Pulling my cart back out of the building at 4:45, it felt much heavier than it had in the morning. So did my legs! I did not feel safe to drive, but what could I do? Kids seem to think that teachers sleep at the school, which seemed like a great idea at that moment. But all I wanted to do was get home and flop on the couch.

I got into my hot car and jacked the AC up full blast. I took more medicine (4 pills). As I fought traffic to get onto the highway, I had to use all of my brain power to pay attention to the road. It was exhausting. I actually had to think: "Green light, that means you can go through the intersection. There is a car with red lights on, OH, slow down. Other cars, they might turn out." Intersections were the worst. Too much stimuli to process.

On the highway, I was able to cruise and think. All I could think was, "How can I do this?" I began to pray, pouring out my heart and my tears to Heavenly Father. I asked for help getting through work and life. I explained that I needed it cool or to feel like it was cool. I was worried about the extra layer of clothing I wear, which only makes my heat intolerance worse. Then I guess I forgot I was praying. I listened to audiobook scriptures and focused on the cool of the AC.

I got home at 5:15. I slowly pushed myself up the walk to my home. Opening the door, I saw my roommate sprawled out on the couch, with bills piled up at her feet. My bills, which arrived weeks ago. I knelt near her head to plug in my laptop and laid right down on the floor. I did not have the energy to sign to her and ask her to make room for me. I could not think of the words to say. So I laid.

After a minute, she told me to get up and sit on the couch, and gosh, why didn't I just move the bills? I had not had the energy or the problem-solving skills. And I did not have the energy or the words to explain that to her.

She sat up and moved the bills, gesturing for me to sit with her. But once I was down, I could not get up. I just laid there. I could not think of words to say. "I'm too tired to get up." I could not think of that. With one hand, I signed "Tired."

But I did not sign it clearly enough (and I was lying on my stomach at the time), so she did not understand me.

After a few tries, I was able to push myself up onto my hands and knees and crawl onto the couch. I laid my head on her lap and cried. She was so sweet, trying to make me feel better. She listened to the few thoughts I could get out. She brought me ice pops. I finally asked her about her day, because it is easier to let someone else talk than to try to formulate sentences when I am tired. After an hour or so, I was strong enough to make a phone call to order pizza. I took more medicine (9 pills)

I laid on the couch for the rest of the evening. For at least two hours, I longed to die. I felt so awful, with my heavy body, my fatigue, pain, feeling like my head would fall off, thoughts I could not keep in my head long enough to complete. The idea of another day like that... and another... and another... A whole new school year... It was too much.

When I had enough strength to pay attention, I watched TV. When I had enough strength to sit up, I wrote last night's blog post.

Around 8:45, I was falling asleep, and my roommate suggested going to bed. I did not have the ability to think about whether I wanted to go to bed or not (or to think of that myself when I was tired), so I did as I was told. After taking medicine (5 pills).

It took me a long time to get ready for bed, because I kept forgetting what to do. Something with this green thing... right, floss, it's for my teeth. I usually stand at the sink, but what do I do next? It took over half an hour to wash my face, put on face cream, floss and brush my teeth, and use the bathroom. I was overtired again, and I cried when I got into bed. Lights out to prepare for another day of the same.

What I Want You to Know

If you want to know me, you need to understand my MS. Here are some common questions about multiple sclerosis and web links to answers. Why reinvent the wheel, right?

What is MS? 

What are the symptoms of MS?  (This is not comprehensive!)

What does MS feel like?
Also see this.
(Look at both--they are very different.)

What is the difference between MS fatigue and regular fatigue/tiredness? 

If MS is so awful, why do you look normal? 

Here are some questions that should be asked...

What is the financial impact of MS? 

If MS is brain damage... doesn't that affect your ability to think? 

How can I help?

Also see this.

I am planning to write what a day is like for me. Please see that in my next post.

30 Things About My Invisible Illness You May Not Know

I got this meme from the Invisible Illness Week website. Invisible Illness Week is in September, but I found the meme this week, so I am doing it now.

1. The illness I live with is: Multiple Sclerosis

2. I was diagnosed with it in the year: 2011

3. But I had symptoms since: 2007 (or earlier?)

4. The biggest adjustment I’ve had to make is: Doing much less--working less, going out less, involved in church less

5. Most people assume: I am feeling good, because I look good

6. The hardest part about mornings are: Getting out of the house on time. I need breaks due to fatigue, and I often forget what I am doing due to cognitive impairment.

7. My favorite medical TV show is: Grey's Anatomy

8. A gadget I couldn’t live without is: My laptop (I'm not an alien)

9. The hardest part about nights are: Trying to sleep--my brain wakes me up frequently. Sometimes I wake up because the pain is bad, but most of the time it is for no apparent reason.

10. Each day I take __ pills & vitamins. 30-35 pills/vitamins, 1 intramuscular shot every week, and 1 subcutaneous shot every month. In the 24 hours surrounding my shot, I take an additional 20 or so pills--gosh, upwards of 50 pills in 24 hours! That cannot be good.

11. Regarding alternative treatments I: I am totally interested. I tend to research them and look for studies, but I will try pretty much anything. I have tried Reiki, yoga, and massage, and some of the supplements are alternative treatments. I wish I had the money to do those things enough that they would help me.

12. If I had to choose between an invisible illness or visible I would choose: Hard one! At least with a visible illness people do not expect you to do everything. But with an invisible illness, people at work do not know. I guess invisible for now.

13. Regarding working and career: I am totally stressed out, wondering when I will have to quit. People with MS work an average of eight years after the diagnosis. There is no way I will have enough money to support myself in retirement beginning seven years from now.

14. People would be surprised to know: What MS fatigue feels like. That I am in pain every minute of every day. That I worsen rapidly in temperatures above 74 degrees.

15. The hardest thing to accept about my new reality has been: That I cannot do the things I like to do or plan to do. That plans can change any minute, because I never know what I will feel like in the next hour, much less the next day.

16. Something I never thought I could do with my illness that I did was: Yoga! And physical therapy. 

17. The commercials about my illness: Are practically nonexistent, but I do see online ads for people who do everything they did before, because of such-and-such medicine. Whatever! Those people are rare.

18. Something I really miss doing since I was diagnosed is: Skiing more than three turns at a time. Ski for more than 20 minutes without a long break.

19. It was really hard to have to give up: Hours at work, because I needed the money. And spending time outside during the spring/summer/fall.

20. A new hobby I have taken up since my diagnosis is: Yoga

21. If I could have one day of feeling normal again I would: Ski all day!

22. My illness has taught me: That you do not always get what you pray for, and sometimes really bad things happen even when you try to do everything right.

23. Want to know a secret? One thing people say that gets under my skin is: "You look great, you must be feeling better," and "I love it when you smile, you should do that more."

24. But I love it when people: Ask how I am doing and seem like they are ready to listen to whatever answer I give. And when people learn about MS and try to understand what I am going through.

25. My favorite motto, scripture, quote that gets me through tough times is: 3 Nephi 13: 28-30

And why take ye thought for raiment? Consider the ^alilies of the field how they grow; they toil not, neither do they spin;

And yet I say unto you, that even Solomon, in all his glory, was not arrayed like one of these.

Wherefore, if God so clothe the grass of the field, which today is, and tomorrow is cast into the oven, even so will he clothe you, if ye are not of little faith.

26. When someone is diagnosed I’d like to tell them: Go to an MS specialist to manage your care, not just any neurologist. And after about a month of initial anxiety, learn everything you can about your disease. No one is going to care about your health as much as you will.

27. Something that has surprised me about living with an illness is: How unpredictable each day is.

28. The nicest thing someone did for me when I wasn’t feeling well was: Listen

29. I’m involved with Invisible Illness Week because: I have an invisible illness, and I would like people to learn about it.

30. The fact that you read this list makes me feel: Touched.

Just For Old Time's Sake

Just for old time's sake, I will do my numerical ratings of symptoms. This was so helpful to me in the past, with increasing awareness of my body (a PT goal), noticing trends, and gaining confidence that new problems were real.

It is only 1:00 in the afternoon, and it is the weekend (always better), but I will go ahead and rate how I am feeling so far.

Sensory:
-Pins and needles: 1
-Burning skin: 7
-Electric pain: 4
-Nerve pain: 5
-Numbness: 2 (mostly feet)
-Vision: 1
-Hearing: 0 (my tinnitus got worse again with my last relapse, but it went away at the same time that I had improvements with pain, sleeping, swallowing, and spasticity)

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

Cognitive:
-Processing: 3
-Memory: 3
-Attention: 1
-Confusion: 0

Other:
-Fatigue: 6
-Balance: 2
-Proprioception: 2
-Sleep: 3 (woke up a lot)
-Bladder: 0
-Swallowing: 0

Emotions: Kind of frustrated, wanting to enjoy my day but feeling like I might not be able to. Too tired.  But happy that it is the weekend, so I do not have to go to work. Glad that I had a therapy session today. Not too stressed, not anxious. Some fear related to my MS at the back of my mind.

Icy Waters

When I was at the beach, I could not help but think about the waves analogy. The waves analogy was okay but never perfect, because it seems like no matter how smoothly I dive, the waves still churn me. I keep getting pounded.

After a couple of days, I had a different thought. Dealing with this disease is something like swimming in frigid waters.

The water was so cold the first few days I was there! It took so long to get used to it. I crept in, ankles, shins, knees.... When I finally got used to it, I could enjoy myself in the water. It was still cold--not as enjoyable as temperate waters--but it got better than when it first washed over my toes.

Getting in slowly helped.

Distracting myself with enjoyable activities helped--boogie boarding right away instead of waiting until I was used to it to go grab my board.

The bottom line was that getting used to the cold was hard no matter what. But giving up after only getting in up to my knees made me miss out on some enjoyment that could be had.

I have to get used to MS. It seems impossible, but people have apparently done it. Come to terms with it, accepted it as part of their lives. They say it gets better, that you can get used to the icy waters. I am not putting an expectation on myself to do this quickly, but I hope I will make peace with my MS one day soon.

Work Is the Problem, Not MS

I had a fantastic vacation last week. I spent a week at the beach, which is one of my favorite places to be. A good part of my childhood was spent on beaches, so they are home to me.

My MS settled down before my vacation began, which was great timing. I would have like for my MS to settle down during the two "vacation" weeks before that, where I was off work but mostly just hanging around the house. Oh, well. I was glad to feel better for the beach.

After a few days there, I was feeling really well rested. I had almost no pain. Not much fatigue. I thought that I must be healing really well! I did not feel like my MS held me back from anything I wanted to do, as long as I took it easy and did not try to pack a lot into a single day.

Unfortunately, I felt worse again this week. I am back to work. That was how I recognized that MS is not the problem; work is the problem.

I had the same level of ability/disability (is that cup half full or half empty?) both weeks. The difference was what I was required to do. I realized that if I were not working, I would enjoy these days and years more. That realization made me sad, because I am pretty sure I have to work. From the research I have done on disability finances, I am a lot better off working.

But I do not think I am better off emotionally if I am working. And the stress is horrible for my disease, increasing the inflammation that makes my body attack itself. Maybe I would not have so many relapses if I did not so much stress.

What kind of life to I have if I just work and lie down every day for years, until I am no longer able to work and also unable to enjoy most of what I like to do?

Any rich men out there interested in a semi-disabled wife?

Medication Reaction?

I guess I will give an update on my health.

I had to stop the steroids after one dose of 100 mg. A few hours after taking the drug, I was half asleep and suddenly jolted awake by my heart pounding. It was like nothing I have experienced.

My heart was pounding so hard that I seriously wondered if I might die. My head was spinning--vertigo, even though it was dark. I immediately suspected a medication reaction or interaction. I felt like everything was far away. And everything seemed big and small at the same time. Swollen. I do not know.

Then I remembered reading in a psychology book about panic attacks, that people think they are having a heart attack or will die. I remembered the advice to breathe through it. Just keep breathing. Wait for it to pass, because it will not continue forever.

And it did stop after a few minutes. But it happened again, three times in half an hour. Then I fell asleep. More like passed out: I had taken sleeping medicine.

I emailed my neurologist, describing the incident and saying that I thought I had had a panic attack. His response surprised me. He thought it was a medication reaction, because people do not have panic attacks when they are relaxed and almost asleep. He told me not to take the steroids for now. If I were to take them again, make sure it is in the morning.

Umm... I did not want steroids. But after I had resolved to take them, I wanted them. I expected to take the course and be done. I was disappointed stopping, because I was really hoping they would help. I considered taking them anyway. I still thought it might have just been panic attacks. But I was afraid that my doctor was right, and I might have a worse reaction and need medical attention; then my neurologist would not be able to trust me. We need to be able to trust each other.

I wonder if I got a bit better on Thursday and Friday because of the steroids? I took them Tuesday night. I do not know. MS is so unpredictable.

What I do know is that I have been sick for over a month, and I want to get better.

When the Waves Crash

The beach is my home. I grew up going to the beach at least once a week during the summer, usually more often. My sister spent her time on the sand, perfecting her tan. I spent my time in the water.

Sometimes the waves are scary. But I always go in, even if the water is cold or the ocean is angry. I go in when the yellow flags are up. I know waves like the back of my hand.

Some waves break far out. Some break at the shore. Some break twice. Some break and release. Some break and roll. Some are regular. Some are variable.

Sometimes the water is so choppy that the waves are not discernible. The water crashes in on itself, churning sand and bits of shells into a grey, foamy mountain that churns people right along with the shells.

There are several ways to handle yourself in the ocean, to get through the waves rather than having them get through you. You choose a strategy based on the type of wave you see coming.

Obviously, it is important to be looking at the ocean. If you are looking back at the beach, you do not know what is coming at your back. Look at the ocean. Waves rise up without much warning, and you usually do not know what is coming until it is before you, but you do have a few seconds. 

You can dig your toes into the sand and angle your body slightly forward. This is a good strategy for small waves or small chop.

You can jump and twirl in the wave. This is a good strategy for small/medium, regular waves. Regular waves have a distinct curl and are spaced out a little. You can enjoy them and avoid being knocked over if you jump. Giving them your back prevents getting sprayed in the face when the wave bounces off your body.

You can duck and let the wave roll over you. Ducking is great for medium, regular waves. It is not so great in chop, because you would be ducking all the time. And you would probably get knocked backward, since choppy seas tend to swirl beneath the surface. All the energy is not in the wave; it is dispersed throughout.

You can float. This is okay in light chop. The problem with floating is that you cannot see what is coming. And you will get flipped upside down and slammed into the sandy floor if a good-sized wave comes.

You can get behind the waves and push up, moving with the water. Jump lightly, keeping only your head above the water. This is not possible if the waves are breaking far out or if you are too short to touch the bottom. Then you would have to tread water, and that takes a lot of energy. But if you can get past the where the waves are breaking, you can rise and fall with them as they begin.

You can dive through the wave. This works for waves of any size (okay, not tidal waves). You make your body stiff as a board, arms straight in front of you, and aim for the base of the wave. It will roll right over your back. But you have to stay stiff enough. If you are floppy, you will get churned. But if you do it right, diving through the wave is the safest, most reliable way to get through. 

When you are in the ocean, you have to do something. If you do nothing, you will get churned in the waves, scraped by pebbles and shells, and slammed into the floor.

It would be great to get out of the water. And we will get out of the water one day. But we needed and wanted the experience of the ocean, and we chose to get in. 

*****

For small and medium trials, we have lots of ways to get through, like digging in our toes, jumping and twirling, ducking, and floating. 

Sometimes we can strategize with bigger trials, anticipating them and letting them roll through us before they get too bad. 

But sometimes we have big trials right in our face, and we have to dive through, staying stiff enough that they roll over us. We are using the same amount of energy as if we had dug in our toes or jumped, but we are using our energy in a different way. A way that works better. I think we can learn the diving strategies from other people who have been there. I taught my friend with the literal ocean. With my figurative ocean, I am learning from magazines, websites, books, and my shrink. That helps. But I still have to use the strategies.

Talk to my doctor and nurse, use the cognitive-behavioral strategies, take my medications, try other meds when mine do not work, go to PT, go to yoga, talk to friends, and cry when I need it.

Sometimes there are tidal waves, and no strategy in the world will get you through. Maybe my trials are like the North Shore. So what can I do? Well, even the North Shore gets calm sometimes. I hope my MS does.

Deep Waters and Fiery Trials

Sometimes it seems like spirituality and chronic disease cannot coexist. I believe in God, and I know the church is true. I know I will return to live with God after I die--that is why I want to die. But how can I live like this?

I guess spirituality is not the point. The point is that question: How can I live like this?

I hate this life. I hate life with MS. It sucks. It is so difficult that sometimes it seems unbearable. Then I go to church and hear about how I need to give to other people, serve other people.

OK, that is what is bothering me. I feel like I am not doing enough, and at the same time I feel like I am doing all that I can, and people should recognize that. Maybe they do. Not a lot of people know how much I serve a disabled friend every day.

I wish I could do more, serve more. I wish I could babysit people's kids when they need a break. I wish I could provide education on behavior management and child development to parents in the ward. I wish I could finish my website, so I could easily refer people there for resources. I wish I could help with music. I wish I could participate in the choir! I wish I could be more involved in the ward. I miss the me who had three callings and did them all with a smile. I wish I could do my one calling now.

I hate when people ask how I am doing. I feel like the answer is always wrong. Often I say fine, because that is the right answer. The true answer makes people uncomfortable. They look away, they do not know what to say. The true answer is that I am hanging in there, but barely.

Today I held back tears many times during church. When we were told that we must serve if we are following the Savior. When we learned that of course it would be easier not to be here on earth, but that is a pretty lame thing to think. When people shared how their prayers were answered through other people. When we sang "Where Can I Turn For Peace?" When we sang "Lead Kindly Light." I do not remember the rest. My brain is shot from interpreting.

Prayers answered? I guess my prayers are answered. Sometimes. I believe that prayers are answered when we pray in faith IF it is a good thing that we are asking. If the thing we ask for is in accordance with the will of our Father. Heavenly Father wants what is best for us, so if we ask for something that is not in our best interest, he generally will not give it to us.

So I assume that suffering is in my best interest. It does not make me believe in God less. It does make me wonder about prayer. I think maybe I am not doing enough. Not praying enough. We are supposed to have a prayer in our hearts all the time. I cannot remember to do that. I forget everything! I forget what I came into a room to get, etc. I have actually introduced myself with a totally different job title before. The wires in my brain are frayed and crossed.

Of course, I feel dumb for pitying myself. I have put up a strong front for a long time, and I am getting tired of doing that. Sure, I can bust my butt and interpret for an hour, but then I am wiped out for several hours. When I am sick, in pain, fatigued (don't call it tired), and wiped out, I often get frustrated or pity myself.

Today my right arm would not work properly. I had a hard time keeping it up and signing. I did not realize it was that way until I started interpreting. It was weak. So I used my left arm more, and I let someone else take over for a while. How can I use this as a metaphor? When something in my body is not working, I cannot force it to work. I have a choice to compensate if possible or to let someone else do something for me.

I have improved with letting people do things for me.

I am sick of people expecting me to smile through it. You would not smile if you were in my situation! Feeling awful and still having all the responsibilities of life. Not being able to do things physically. In pain. Fatigued. Fatigue is so much more than tiredness. Imagine feeling like you have the flu every day. And then people expect you to grin and bear it. You could for a while. For how long? For a month? A year? It has been well over a year for me, and things are getting worse, not better.

I am so disappointed that I am not getting better. I had a good day on Friday, and then I was really sick yesterday. Today I am a little better than yesterday, except that my arm got weaker again. I am having so much trouble with stairs. I walk slower. At least my pain is better. But I had another not-so-good night of sleep last night. How disappointing. I slept great Thursday night, so-so Friday night, and then up every two hours last night. And it took me a couple of hours to fall asleep.

When I had a good day on Friday, I fully expected that I was getting better. Hope comes easily to me. And I know the true meaning of hope, that it is a confidence that we will have eternal life if we do what is required. Here I am using the worldly meaning of hope, a sort of optimism.

The problem with hope is that it sets me up for disappointment. Repeated disappointment has led to depression or anxiety sometimes.

When will I get better? If I knew it was for another year, I think it would be much easier to handle. When you can see the sun coming through the clouds, even if it is really far off, it makes it easier to withstand the storm. Thinking back to the song "Lead Kindly Light," I know that we all walk in darkness and cannot see where our path leads. One step enough for me? I am not sure it is. My path is through deep waters. Hm, that reminds me of another hymn, "How Firm a Foundation." I love the fourth and fifth verses--the ones we rarely sing.

When through the deep waters I call thee to go, the rivers of sorrow shall not thee o'erflow. For I will be with thee, thy troubles to bless. And sanctify to thee thy deepest distress. When through fiery trials thy pathway shall lie, my grace, all-sufficient, shall be thy supply. The flames shall not hurt thee; I only design thy dross to consume and thy gold to refine. 

Hm. I feel like the flames have hurt me. But I also feel like my dross is being consumed, and I hope that my deepest distress will help to sanctify me.

When I pray for relief and do not get it, I feel alone and sad. I see that my disease has blessed other people's lives. I bonded with two other women through it. I regained contact with my dad.

The person most blessed by my MS is one of my best friends. She is becoming less selfish. She is learning to give, beginning to feel charity. That is awesome for her.

But it stinks for me!

I wonder how much deeper my waters will get. Will I be paralyzed? When? Not knowing is so hard. Of course no one knows their future, and anyone could be hit by a bus tomorrow, blah blah blah. I would much rather be hit by a bus. (and die... not hit by a bus and live with a brain injury or something... that is pretty much what I already have...)

OK, I should talk about another metaphor for life and trials, which I discussed with my shrink. I am going to end this post and make a separate post for that metaphor.