Hello Aubagio!

I said a not-terribly-fond farewell to Avonex a month ago, and today I received my first shipment of Aubagio. I guess I should not have been surprised at the small package, but of course it is only a few pills. Exactly 28, to be highly exact. I find that annoying, because a prescription should be for 30 pills--30 days. With 28 pills in the pack, I will need to refill it more often, which means paying a bit more each year. Whatever, at least I have insurance.

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If any of you MSers stumbles across this blog, it took exactly three weeks for my insurance to approve Aubagio.

I am excited to begin taking this medication tomorrow! And I have an appointment at the MS clinic. Good timing. If I have any odd side effects, I will be there. But I doubt anything serious will happen, because Aubagio is not associated with serious, acute side effects.

My appointment tomorrow is the kind I like yet do not like. I will have neuro exams by my neurologist, Dr. Rick, and by someone else. I have not met him (or her?). I hope he is more personable than the Asian chick who freaked out because I told her that she had started her period... on her skirt. Hehe, that loosened her up a bit. I also have cognitive testing (brief) and the usual bloodwork. Also questionnaires. All of that will allegedly by done in two hours. Bulllll.....

I like to have the testing done, because sometimes I surprise myself with what I can and cannot do. I am introspective and analytical, so I nerd out on data. But I do not like this kind of visit, because they will probably make me do the walk. MSers know this one: walk until you go 500 meters or drop, whichever happens first. And I have made the 500 meters every time, but it is by the skin of my teeth. I am totally wiped out after that. That is when I CBT myself: I can stay if I am too tired to drive. But of course I never stay, because when I am worn out, I just want to lie on my couch at home.

Sleep Is Improving

I wanted to add an update on the delightful topic of sleep. I am sleeping better than I was last month. I wonder if it is related to the general healing since that time, a new med, or what. I seriously doubt it is from the advice of the sleep specialist, except for falling asleep faster. I am definitely falling asleep quickly--within 15 minutes.

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My total sleep time is a little more, but I am still waking up more than I should. Certainly more than I want to. Five times each of the last two nights, for example. And I think I may be waking up more often. I am pretty dumb at night, sometimes almost not writing on my paper. I wonder if there are times I do not write the wake up time and just go back to sleep.

So... I am happy that I am falling asleep faster and generally going back to sleep quickly when I wake up. But I still want to sleep better!

Sleep Study

Whoa, I have no blogged about my sleep study!

I had EEG leads stuck to my scalp and face, EKG leads stuck to my chest and legs (checking for restless legs.. cool), a band around my stomach, another one around my check, plus a power pack on my check and a band around my chest to hold it on. I also had a sticker on my upper lip, sticking in my nose, to which was attached a cannula and tubing. Sensing my breathing.

All the EKG and EEG wires were banded together behind my head and plugged into a device on the bed. Then I was expected to sleep. That did not really happen.

My sleep technician was really nice. Of course she could not tell me if they saw any problems with my sleep--besides, oh, not sleeping. She tried to make me feel comfortable there. She talked with me while she was setting me up (which took quite a while), asking about my health and stuff. She did not know anything about MS, so I explained it. She chatted with me about work and stuff. Just about my life. Easy to get along with and very calming, which was perfect for the sleep center.

For the first time, I did not cry when I told someone I have MS.

Studying Sleep

Two more nights until my sleep study! And it is officially approved by insurance (took until Tuesday), so it is set. I am sure it will still cost an arm and a leg, but it is worth it.

I am going to upload a picture of my sleep diary. Now I knew that I have been struggling with sleep, but wow, adding up the hours just now made a big impact on me.

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OK, the picture is bad. I don't feel like getting up to turn on the lights, and the flash of the camera made a glare. The hours of the day are across the top. I make vertical lines for sleep/wake, diagonal lines for lying in bed awake, and shading for sleep. On the right side, I recorded the total hours I slept and the number of awakenings (not counting last awakening for morning). Ignore the top line, because I took Ambien CR that night.

Yeah, so 6:30 is better than 2:45, but it is still not functional for a person with MS. For me! That one day I got 8 hours of sleep, but it was still broken up. Not good. Also, I cannot sleep until 8:45 on a work day, so I would not normally have been able to get that much sleep. My alarm usually would go off at 7:00/7:30.

In related news, I am off tramadol as of today. My sleep specialist speculated that it could affect my sleep, being an opioid. (Despite me being on such a low dose that I had to cut the smallest pill on the market in half.) I have been stepping down slowly, and I had no trouble coming off it. I would say that my nerve pain in my left leg/buttock has been worse, but I will give it some time. The sleep specialist said that I would know whether the tramadol was affecting my sleep within three or four days.

Not related but totally awesome: The increased Trileptal has taken care of my trigeminal nerve pain! When I saw my neurologist on Tuesday, he increased it to three times daily. I am only taking 150 mg, which is not a lot. Dr. Rick was ready to increase from 150 mg 2x daily to 300 mg 2x daily, but I asked for the smaller increase. I can always increase more if needed.

Today was rough, which should not be surprising if you look at the sleep I got last night. But I had great days yesterday (Thanksgiving) and the day before--despite doing quite a bit of cooking. My pain has been down, and my fatigue, while not allowing me to live close to the way I did before, has been much better. I am able to sit up through most of the evening.

Tonight I am really trying to stay up until my eyes are closing, like I did yesterday. Which turned out to be 10:30. Whatever. It is so hard to stay up. It means fighting your body's need for sleep until you lose the battle. What makes it so hard is that the pain increased as the night wears on... agh...

Good Day!

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

I sure hope the good times keep rolling.

Let It Out

My shrink said I need to let the anger out somehow. I get so angry when normal people complain about being sick. Or complain about other problems that are really nothing [compared to a degenerative disease].

I feel like saying, "Oh, you think your flu is bad? Imagine if your head felt like that every day--and you still went to work."

One person really bugs me sometimes. I know that he does not mean to, but he does. He says that I can tell him how I am doing, but I feel like I cannot. I do not like to complain in general, and definitely not if I do not talk with a person much.

Here is what bugs me: You look a lot better. You seem better today. You sound better. You seem like you feel okay today.

Here is the deal: I usually am not better. I am usually busting my butt to put on the Normal Show.

And if I am better, it is not much better, and it probably will not last long.

When I hear that I seem better, it ticks me off. It makes me feel sad. It invalidates everything I am going through. And what can I say? "Well, actually..."

I try to tell myself that it is just ignorance, not something that a person is doing to hurt me. It does not help very much, though.

Oh, right, I was letting it out.

That makes me really annoyed when I hear it. I have tried to educate that person, but I guess it was not enough. It takes so much time and effort to get people to understand this. I do not know whether it is always worth the effort or how to tell when it is. I do not have effort to spare.

They Took It Back!

My sleep study was canceled, because my insurance would not preauthorize is. They said that they need up to five business days. Whatever!

The secretary said it is usually two to three days for the approval. Unfortunately next Thursday, Friday, and Saturday are full, so my appointment is next Sunday, November 25.

Sleep Specialist

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

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

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

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

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

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

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

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

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

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

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

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

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

Hold the Phone...

More changes!

Because of my delicious, new pain, Dr. Rick said to hold off on switching from gabapentin to Lyrica. He wants to wait until I am more stable (I did not even laugh when he said it). He gave me a new medication called Trileptal. Another seizure medication, which often helps with trigeminal nerve pain.

I either have trigeminal nerve pain or "ice pick headache." He is not sure which, but he is going with trigeminal nerve pain meds to see how I respond. I began taking Trileptal today. It is the kind of drug you have to take everyday and build up a steady state with, not like the tramadol, where I can take more or less depending on how much pain I have.

Speaking of tramadol, Dr. Rick again reminded me to cut it to 25 mg. Ideally, he would like to see me off it, because I have quite a few drugs that can interact. Tramadol, gabapentin, Trileptal, and Ambien CR. And Vicodin, but I will not need to take that anymore, since I stopped the Avonex. Or I hope I will not need it again. It stinks at helping nerve pain, so probably not.

I have had a weird headache today, on the top of my head. The trigeminal nerve pain started in the afternoon, but then it got a little better. Maybe the Trileptal is already working? Whatever, I will take it.

So that is the bad news. The good news is that I will stay in the study! I know: How is that good news?

Basically, I have three options:
1. Continue in the study with the shots (which I know means Avonex, although technically it could be either Avonex or daclizumab.
2. Continue to be followed by the study, with the regular visits and labwork (all free). I could pursue any line of treatment I choose but would have to pay for the [pricey] MS drugs.
3. Leave the study altogether.

Option 1 is pretty much out. It would be nice to have free MS drugs (the shots), but free is not so great if they are not working. The only real advantage to option 3 would be not driving into the city every month if I were feeling okay and did not need to be seen. But I think the benefits of free visits when I need them (um, all the time) and free labwork outweighs that drawback. So I chose option 2.

I have not heard from the nurse yet about my next appointment, which should be next week. Oh, and I have not heard back from my internist's office about psychiatrist referrals. I guess I will add that to my to-do list for tomorrow (like I maintain a to-do list...).

Not Crazy

On Friday, Dr. Rick asked me about my mood, as they delicately call it. I told him that I wish I could die but do not have plans to hurt myself. He asked why, and I explained that I am sick and in pain, and that I cannot do most of the things I like to do. Dr. Rick wanted to admit me to the hospital, because he wants psychiatry to see me, and being admitted is the only way to make that happen quickly. He also wanted to have my pain monitored and try to get it under control, but I think mainly he wanted to prevent me from killing myself.

I was adamant that I do not want to be hospitalized.

1. I already have trouble sleeping. The last thing I need it machines beeping and people making noise 24/7.

2. Dr. Rick is changing my pain meds (gabapentin to Lyrica). The pain is one of the reasons I want to die, so if that gets better, I will not want to die. I pointed out that my severe depression began immediately after Alyssa told me that there was nothing to do for my fatigue and little to do for my pain. (I did not dime her out but said "at my last appointment I learned that...") Fix my pain!

3. I would be anxious in the hospital, because I do not trust them. Doctors, technicians, etc. I do not trust that they are identifying my problems correctly or that they will listen to me. Or that I will be able to express myself well.

4. I would be bored in the hospital. There is nothing to do there! I can kill a lot of time on google, but not that much.

5. I cannot afford to miss work.

6. I do not want a psych label, because I do not want doctors to think that my physical problems are in my head. I have enough trouble getting doctors to listen; I do not need that label following me.

I did not tell Dr. Rick all of that, just reasons 1 and 2. Dr. Rick stared at me intently, obviously trying to decide whether to trust me. He decided that he could. Maybe.

Dr. Rick pointed out that this is a vulnerable time. I am changing six medications this week, all of which can have psychoactive effects. Also, I have reacted poorly to medications in the past. Dr. Rick said that he would allow me to make these medication changes on an outpatient basis only if I maintain strong communication with them. He wrote down the titration directions for gabapentin and Lyrica, along with the other changes. He trusted me to understand what to do, but he did not completely trust me to tell them if my mood dropped. I had to promise to call him if I felt the urge to kill myself, and he wrote down his cell number on the directions.

I already had it.

I have never used his cell number, because I have never feel like my problems are major emergencies. I cannot imagine calling if I wanted to kill myself. A person who wants to die is not going to call. A person who calls is looking for attention. I have engaged in attention-seeking behavior when I was young, but not anymore. 

My shrink made the same request weeks ago, that I call her if I want to die. Of course I did not. How would it help? She cannot make the pain and fatigue go away. She did say that she knows someone who is truly suicidal would not call, because they want to die, not be talked out of it.

I would consider calling a friend, I guess. Maybe the MS Society hotline. Maybe a suicide hotline. Maybe Alyssa. Right now I have no plans to kill myself, mainly because I do not want to scar the person who finds me. And I do not want to leave my bug alone.

The bottom line is that I am clearly of sound mind, so Dr. Rick could not admit me against my wishes. He wanted to see me back in two weeks, though. And he insisted that I make an appointment with a psychiatrist. He also referred me to a pain specialist.

Good-bye Avonex, Hello Aubagio

So much to say!

I went for my regular appointment last Friday and ended up dropping out of the study. Avonex was not a good fit for me--it is obviously not helping.

My neurologist gave me the choice of Copaxone and Aubagio as the next logical steps. Let's see...

Copaxone
-On the market since 1996
-Daily subcutaneous injection (although the manufacturer is applying for FDA approval of a higher dose given three times per week)
-Immunomodulator
-Commonly causes site reactions like pain, redness, and hard lumps
-Commonly causes fat breakdown under the skin, making your thighs and stomach dimply
-Can have cardiovascular side effects, along with many others
-May reduce relapses by about 30%

Aubagio
-On the market since October 2012
-Daily pill
-Can cause abnormal liver tests and hair loss (but apparently not a ton of hair loss)
-May reduce relapses by about 30%

I chose Augabio. Wouldn't you?

My neurologist is not confident that anything is going to work for me. He said that my disease characteristics are similar to a subgroup that do not respond well to anything. Tysabri is a possibility in the future. I am JC positive, which puts me at higher risk for serious complications, but I would still try it. Matter of fact, I would try it now. Some people actually feel better on it. The best I can hope for with other meds, including Aubagio, is to feel the same and get worse less quickly than I would otherwise. Another medication I could try is BG-12, which is an oral medication expected to be FDA-approved early next year.

That is not the only med change up for me. He is transitioning me from gabapentin to Lyrica, reducing my tramadol (I know: huh??), and trying Celexa instead of Cymbalta. I am still open to trying Cymbalta in the future if the start-up phase were slower. He did give me a low dose of Celexa, 10 mg. I started it yesterday. It makes me feel weird in a not-good way. And I think it makes me feel sick. But that is hard to say, because I also have...

New pain! In my face! It began on Wednesday or Thursday and was about a 6 until it suddenly shot up to 8-9 yesterday and 9-10 today. Seem to be trigeminal nerve pain. Ironically, it is commonly called "suicide pain." Like I need anything else to make me want to leave earth. Here is where the pain is...

See the orange lines? My pain is along the one going straight up, the one going to the eye and up to the forehead, and the one going along the cheek to the upper teeth. It feels like someone is stabbing me in the face with a hot poker. My right eye itself kind of hurts, but the really bad pain is above/behind it. It also hurts on the ganglion, the area where the white label line is pointing.

I drew on my face with eyeliner, showing where the pain is, and I emailed a picture of that to Dr. Rick and Alyssa. I know they are not working today, but maybe they will see it tomorrow. If not, I will call.

Otherwise I am the same. My burning pain is holding steady around 6-8. My left foot is killing me, has been all week. That might be getting worse, actually. It is not bad right now, maybe a 6, but it has been hanging around a 9. My walking is the same or maybe better. I had a sore throat this week, but it is tons better yesterday and today.

Today my hands hurt, but not the skin. Feels musculosketal, so I doubt it is from MS. Maybe from Celexa.

I am going to try icing my face...

MS Is BS

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cymbalta Wrap-Up

I guess I should write what happened with the Cymbalta.

Bad anxiety and panic first two days. Recurred as dose neared (coming down off the drug) every day. In fact, as the dosing time neared, I felt like I wanted to tear my skin off. I felt crazy.

I was sleeping fine (8 hours) on Ambien CR until the first Cymbalta dose, when I woke up four times during the night. Same the second night. So I tried taking it in the morning.

I took 30 mg on Monday night, Tuesday night, Thursday morning, Friday morning. I opened the capsule and poured half of it (maybe more than half) out on Saturday and Sunday mornings. That was it.

My pain was not better. Probably needed more time. I was supposed to take 30 mg daily for a week, then increase to 60 mg. So I really do not know if it would have worked.

After I went off the Cymbalta, I was sleeping better. I even slept four hours straight on my own one night! (Sunday night.) So I think Cymbalta made my sleep worse, but I am not sure. Wait... I was taking about 10-12 mg of Cymbalta on Sunday. Then I slept Sunday night. Ahhh.... I do not know what to think!

My MS got worse three days ago, and I am sleeping worse. That makes me not want to try Cymbalta again. I do not like trialling a drug when I am not relatively stable. How will I know what was the drug and what was the disease?

Trying to think what the other side effects were. They were mild compared to the psychological effects and the sleep problem. Dry mouth. I do not remember what else.

I think my mood was better, even though I did not reach the full dose. I can tell the difference between then and now. Oh boy. Try this expensive drug again or not? Honestly, I do think about the cost. My shrink says I should ask the bishop to help pay for it. It is pretty expensive, even with insurance.

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.