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.

Support Group Meeting

First, yesterday and today were pretty much the same: full of pain.

Now for what is on my mind: my first support group meeting. I was not sure what to expect in terms of activities, and it was mostly discussion of people's problems and experiences. That was okay. It was nice to give and receive in a group where everyone has similar struggles. Sort of similar.

One unexpected aspect of the group was their level of disability. The group is billed as support for people with mild MS or those recently diagnosed. I was surprised that some people were called mild. Some could not work anymore. Some used walkers. Some had tremors in their voice that made it harder to understand them. Some were dysarthric. And some had cognitive impairments that affected their memory, language, or social skills.

There was only one person like me, where no one would guess that we have MS. Hiding it well. Sure, subtle signs could give it away to perceptive folks, but the vast majority of people would not know. That person asked for my email address, so that we can keep in touch.

I was looking forward to the meeting, and I was surprised when a few people praised my bravery in attending. Some praised my beauty, which I did not mind at all! Oh, and I was the youngest there by far. Most were in their 50s or 60s, and I am in my 30s. I think the other "you'd never know" person must be in her 40s--I just know that she has college-aged children.

When the disabled kept pouring into the meeting (alright, not pouring in... there were maybe 10 of us there), I became apprehensive. A little anxious. They represent my future, and I did not like that future. I still hope to become healthy. Be healed. It does not matter that my hope for healing is not reasonable; I still hope it.

As the meeting progressed and I got to know their personalities, I was not so anxious. They were really nice people. I was to continue attending this group.

I hesitate to do my ratings at this point in the day (around 4:45), because things typically get worse in the evening... But I have been forgetting to blog, so I should go ahead and do this.

Sensory:

-Pins and needles: 2
-Tingles: 2
-Dysesthetic pain: 9, I am ready to tear my skin off. Anything to stop the burning.
-Paresthesias: 3

-Numbness: 2
-Vision: 1
-Nerve pain: 5
-Hearing: 1, but was a 2 this morning--tinnitus! Yesterday I had a brief hearing drop in my right ear. Probably not much, maybe 10-15 dB. Enough to be noticeable but not to interfere with communication. I am trying to remember how long it lasted, but it came back so slowly that I did not notice the time frame.

Motor:
-Walking: 3, slow--my legs feel like they will buckle
-Sore muscles: 5, quads and upper arms (sign language)

-Spasticity: 2 lower body, 4 upper
-Weak muscles: 6, doors are once again almost impossibly heavy

-Endurance: 6

-Fine motor: 0

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

General:
-Fatigue: 5
-Balance: 0, not counting in the dark

-Vertigo: 1

-Sleep: 2

-Bladder: 1, medication (this is getting better... but we'll see now that the medication has been increased)
-Proprioception: 0
-Swallowing: 0
-A: 2
-B: 3

Emotions: Okay. I spoke with an old friend this morning, and we cried together over something that happened a long time ago. Otherwise I have been okay. I had a good head-shrinking session yesterday. We are trying some cognitive behavior therapy strategies, which seem to help. They do help when the shrink helps me work through the steps, but I am not yet able to apply the strategies in the moment. Anyway, I am feeling positive about the work I am doing in and out of the therapy sessions. I got a book called The Feeling Good Handbook, which has various exercises to write out. I typed mine, which is easier than hand writing them. My shrink was excited that I am following through on it, and she suggested I email them to her. She can read over them before our sessions, and hopefully she can help me better that way.

Catching Up

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

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

Friday was a big day for neuropathic pain.

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

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

Monday was a pretty good day.

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

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

Today was also rough then good.

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

Sensory:

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

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

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

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

-Endurance: 4

-Fine motor: 0

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

General:
-Fatigue: 2
-Balance: 1

-Vertigo: 0

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

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

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

Awful Then Better ?

I had a completely awful morning. I was tired and weak... SO weak. I went to breakfast with a friend (I am not going to stop living just because I feel awful), and then we went to Target. I did not want to use the scooter, so I pretty much draped myself over the cart, using it to help support my weight.

When I got home, I tried to take a nap, but I was startled a few times just as I was about to fall asleep. I am the worst napper on the planet, so after two hours of trying, I gave up. I could not walk down the stairs, so I bumped down on my behind. Oh, and I was in a great deal of pain, had been since just before I tried to sleep. I remember that sitting to go downstairs was painful.

Anyway, I came downstairs, flopped on the couch, and burst into tears. I cried for a long time, then I laid around for a long time. At some point, I got up and went into the kitchen... and realized that I was not tired anymore. I ended up having plenty of energy from about 4:00 on.

I wonder how I can feel so awful and then better? Is there a reason I felt better? Or just "MS is weird"? Honestly, I should have been even more tired, because I took a Vicodin around 3:00. Maybe Vicodin gives me energy? Ha, I doubt it. I am going to take another one now--my pain is building again.

Sensory:

-Pins and needles: 2
-Tingles: 1
-Dysesthetic pain: 2 morning, 9 late morning-early afternoon, 6 while on Vicodin (I think it did help), 7 now that the Vicodin is wearing off
-Paresthesias: 7, electricity and some electric shocks. But most of the day was fine. This increased in tandem with the dysesthetic pain.

-Numbness: 2, my tongue is so much better! Could it have been related to the dry mouth? Or directly to the ami?
-Vision: 1
-Nerve pain: 3
-Hearing: 1, tinnitus that I would guess is 1,000-6,000 Hz

Motor:
-Walking: 6 morning, 2 evening
-Sore muscles: 4
-Fine motor: 2
-Weak muscles: 8 morning, 5 evening
-Spasticity: 3

Cognitive:
-Processing: 0
-Memory: 0, I think
-Attention: 0
-Confusion: 0

General:
-Fatigue: 10! but now it is more like 3
-Balance: 3
-Sleep: 1
-Bladder: 2
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 0

Emotions: I cried because I was frustrated and exhausted. It seems like I often cry when I am exhausted. And of course, some of the tears were because I was in pain.

Getting Forgetful

I forgot to blog the last two days!

Tuesday was one of the more painful days I have had. Burning pain in my skin. But spasticity was not bad. I was pretty darned tired. And I had PT.

Yesterday my pain was low. It was wonderful! I got some anaerobic exercise in the morning. And I had PT. PT has been good; I have not been kept waiting too much. Yesterday my left knee was bugging me again, and I had some trouble walking on the treadmill. Jackie the PT checked it out and found that the problem was not with the joint. My spastic quad muscles were not allowing my knee to work properly.

Today I had another less pain again. I was busy at work and came home pretty tired. I made myself a bit of dinner--boiled some ravioli--and totally wore myself out. I have been resting on the couch all evening and have no energy. But I was walking really well all day until I ran out of steam.

I had two weird forgetful moments today. A coworker told me that she was going to get her blood pressure checked, explaining that it had been up and down all day. A few minutes later, I looked around to find that she had vanished. I had absolutely no recollection of our earlier conversation and was really wondering where she was. I let it go. After five or ten minutes or working and idly wondering (as it is highly unusual for her to be gone), I asked another coworker where she was. Then I instantly remembered where she had gone.

The other example is that I had pills in my pocket. At first I thought they were my mid-afternoon dose of gabapentin, but then I realized that they were my breakfast pills, which I had forgotten to take. I took them around lunch time. Several hours later, as I was packing my things to leave, I remembered the pills and realized that I had not taken my mid-afternoon dose of gabapentin. I felt in my pocket for the three gabapentin pills, only to find that my pocket was empty. I panicked for a minute, wondering where the pills might have dropped out. During a meeting? Maybe I should look in the conference room. First I looked around my desk area. A few seconds into my search, I remembered that I had taken the pills in my pocket--and they were not gabapentin.

These little lapses in short-term memory happen to me all the time. They make me confused sometimes.

My dry mouth has been pretty bad. I emailed Dr. Rick today to let him know that I am throwing in the towel on amitriptyline. He is going to call in a prescription for another tricyclic anti-depressant, desipramine. I wonder if my pain will increase again when I stop taking the amtriptyline. I am not sure if it is helping or if my pain just happened to decrease yesterday and today.

I ordered an exercise ball and foam roller, which I am using in my PT sessions. I can use them for exercises at home.

Sensory:

-Pins and needles: 3
-Tingles: 0
-Dysesthetic pain: 5
-Paresthesias: 6, electricity crackling through my right foot (mainly)

-Numbness: 3, still having tongue issues, mild fingertip issues, and of course the feet as always
-Vision: 2, up and down but generally better
-Nerve pain: 4
-Hearing: 1, sometimes I think I hear sirens... weird

Motor:
-Walking: 1 daytime, 5 evening
-Sore muscles: 1
-Fine motor: 3, tremor bugging me
-Weak muscles: 4
-Spasticity: 1

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

General:
-Fatigue: 4 day, 8 evening--"can't hold my head up" tired
-Balance: 2
-Sleep: 0
-Bladder: 2
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 0

Emotions: Fine. I handled a potentially stressful meeting well. But then I almost cried at a friend's email mentioning my MS and how you would never know I am in a lot of pain. That I hide it well. That makes two people who have said that to me today, that I hide it well.