Deep Waters and Fiery Trials

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

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

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

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

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

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

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

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

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

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

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

I have improved with letting people do things for me.

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

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

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

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

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

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

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

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

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

But it stinks for me!

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

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

Why Am I Doing Better?

I helped paint a bathroom off and on all day. Taping, painting, painting again. Breaks. Like yesterday, I started off kind of rocky--it seems like mornings are the worst as far as my muscles cooperating. I am so STIFF in the morning. But evenings are worst for the nerve pain, pins and needles, etc.

Also like yesterday, I was able to do so much more than I have been able to do in the last few months. I am definitely on the mend for now.

I feel very strongly that the Lord giveth, and the Lord taketh away. My health began a dramatic, upward climb on Wednesday, for no apparent reason. If I am on Avonex, that certainly would not be the reason. If I am on daclizumab, it is a little early for progress like that, and it was not a week after the shot, which I would expect based on natalizumab stories. If it were from the increased desipramine (as this upturn occurred as that medication began to help my pain), how is that possible? If it were PT, why now? And why so suddenly, after a sharp downturn in health the two previous weeks? There does not seem to be a rhyme or reason to it, except what I felt Friday night in the Lord's house: The Lord giveth, and the Lord taketh away.

Sensory:

-Pins and needles: 1, woke up with them, then none all day
-Tingles: 0
-Dysesthetic pain: 3, also woke up with it, then not much all day
-Paresthesias: 2, woke up with the electricity in my legs

-Numbness: 2
-Vision: 0
-Nerve pain: 3, evening
-Hearing: 1

Motor:
-Walking: 1, stiff in the morning, better as the day went on
-Sore muscles: 2

-Spasticity: 3, in the morning, got better, worse as I was painting--my hand would suddenly cramp. OW! And at one point my leg cramped and went out on me, and I almost fell off the ladder.
-Weak muscles: 2

-Endurance: 4, I took breaks, but I did pretty well with the painting project. I did wilt pretty quickly when I was working near the hot lights, near the ceiling.

-Fine motor: 2

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

General:
-Fatigue: 4, but I was doing physical work--so pretty good!
-Balance: 0

-Sleep: 0

-Bladder: 1
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 8, ruined my evening

Emotions: Fine. Feeling a sense of wonder that I have not collapsed back into an MS heap from all this physical work. Part of the wonder is wondering when/if that is going to hit again.

Bad Day Becomes Good

This morning I was too tired to function and had to take a nap. Then I became human. So I'm not going to include the morning in my numbers, just how I felt during the afternoon and evening. I think I was so tired because I didn't sleep well... which I mentioned before.

Sensory:

-Pins and needles: 1

-Tingles: 3--I'm renaming this tingles, which is what I originally called the feeling. That radiology guy called it hypersensitivity. Going back to my word.

-Paresthesias: 1

-Numbness: 1

-Vision: 2--I haven't had anything this afternoon, but I'm including this since I did have floaters this morning for the first two hours after I got up.

Motor:

-Gait: 1--sooo much better!

-Sore muscles: 3 :)

-Fine motor: 3--had to interpret sign language tonight and struggled, but I'm not sure if it was my brain or my hands. Actually, maybe it was my brain.

-Weak muscles: 3

Cognitive:

-Language processing: 2

-Memory: 1

-Attention: 3

-Confusion: 1

General:

-Fatigue: 4 (but it was probably 8 this morning)

-Balance: 1

-Sleep: 7--still stressed out, but MUCH better this afternoon

-Bladder: 3

-Anxiety: 2 this afternoon, was 7 this morning

Great afternoon, right? That's what happens when I sleep what most people would call a good amount (7 hours), get up and sit in a chair for a few hours on the computer and videophone, take a nap for a couple of hours, get up and sit on the couch for a few hours, go to a restaurant (someone else driving), come back and sit around for a couple of hours more, and go out and interpret. Interpreting did make me tired, but honestly, less than two hours of work for the day? I should be feeling good! And I'm happy that I am now.

Resting helped with my anxiety, because I had a better perspective on things when I woke up. Things make more sense when you're not exhausted. And my new friends on the MS forum helped with my anxiety. Honestly, just hearing that most of them lead pretty much normal lives made me feel so much better. They do need to slow down and pace themselves sometimes. They need to rest more. They have a rough time during exacerbations, which they don't have many of if diagnosed early like me. But they walk and work, which are huge for me. I'm still worried about the cost of my medical care, but I am trying not to worry about it too much until I speak with my insurance company. It might turn out that I need to pay very little. You never know. My heavenly father knows what my needs are--I'm sure things will work out according to his plan.

Faith or Denial?

I think I'm in a better place today. My back is still expressing its outrage at being assaulted on Friday, but it's getting better. I can sit supported for 15-20 minutes. I can walk a lot better.

I woke up many times last night but was able to go back to sleep, so I did get enough rest. Well, it seems like there's never enough. But close enough to enough. :)

I'm tired and weak today, but I think my brain is cooperating a little better than yesterday. I'm struggling with spelling sometimes. I was stymied this morning on the word biscuit. I kept typing buis... no that's not right... bius... buis.. finally had to sound out the beginning of the word. Good thing my mom taught me phonics!

I kind of had to laugh at a thought I couldn't get out this morning. I was telling my friend, "I emailed my parents to ask if there are any neurological or autoimmune disorders in our family. I heard from my dad, and he said in his family there are none. But um... my um..." A few seconds went by. I was going to talk about someone else... My friend finally prompted, "Your mom?"

Oh brother.

I've misunderstood my sister a few times. She said, "It fell over," and I thought she said, "I fell over." I was like, "Are you okay??" Yesterday she said something was off and I thought she said it was on. And I get VERY tired when she talks, because she talks so fast. I have to work to understand her. That kind of concentration is tiring.

And I'm making typing mistakes, which is unusual for me. Like lo instead of ol in a word. Looks like my brain is getting hit right now. The pins and needles have not been bad in my limbs.

I decided I was ready to watch the patient information DVD from one of the drug companies, called "Inside an MS Exacerbation." It was a two-minute animation showing the immune system damaging myelin and oligodendrocytes. Boo. My friend watched it with me, which was nice. I want the people around me to be interested in it and learn with me.

I'm trying to be careful about what I read online. I know that there is a lot of misinformation on the internet--when I look up any topic in my profession, 80% of the information is wrong or incomplete. I amin (I'm leaving that as an example of the typing mistakes I'm having to correct frequently) imagine it's the same for other professions. With MS being so poorly understood in general, I think it's safe to assume that reading online information will be useless.

I am similarly disinterested in online MS communities, because I wonder if you would see people with worse outcomes in those. Wouldn't people with good outcomes be out living their lives?

When my [young and clueless] home teachers came over Thursday night, one mentioned that there was a sister in the ward who has been living with MS for 30 years or something, that I should meet her and talk to her. I politely nodded but internally had a strong negative reaction. I do NOT want to meet her. I don't want to meet people that far along in it. I don't want to think that's what I'll become. And I don't even know what her situation is, and I don't want to know.

I re-read my patriarchal blessing, which I knew brought up health. Actually, it brings it up three times, and my blessing is not all that long. Reading that, I was thinking that I would be fine, but I also know that I've misread my blessing before. Sometimes we interpret things the way we want them to be. But I did feel better.

However... I know that denial is one step in the grief process. Some people get stuck in it for years. For example, the parent of one of my students accepted the disability when the child was six years old, despite having been diagnosed while still in the womb. The child did not receive some things that would have helped her during that time.

Faith and hope are good, and I'm holding onto them. But then I start to think, "You know, I'm fine. It might even just go away."Another reason it's hard for me to accept the diagnosis and move through the grief stages is that a couple of people around me have questioned it, thinking maybe I have Lyme. Every time other people question it, I do somewhat.

I wonder if I should talk to a shrink or something. One who is a member of the church would be nice.

So although I'm not sure I'm ready to meet people with MS, I do think I'm ready for patient education. I'm ready to talk about it.

Like I said, I didn't want to google multiple sclerosis. But I did want information, so I googled multiple sclerosis patient education. I found this website: http://www.nlm.nih.gov/medlineplus/tutorials/multiplesclerosis/htm/index.htm

My friend watched it with me. It was pretty basic information, which I knew from google searches over the past few months. But my friend hadn't been learning with me during that time, so it was probably good for her.

And I googled multiple sclerosis and hearing loss, because I did have drops in my hearing and tinnitus a couple of times... I want to say around March or April. Maybe May. It was short-lived (less than half an hour each time) and always went back to normal, but it was certainly weird. I found that about 6% of people will have hearing loss, but many more have hearing dysfunction due to lesions in the auditory pathways or cortex. Hm. We'll see what the evoked potentials testing shows. I'm really glad they're doing that. I'm not at all scared to lose my hearing, though. Losing my vision would be more devastating.

I haven't cried today. That's good, right?