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.

More Tests

Oh brother. I really wish that my Dr. Harry had had my file for my appointment two days ago. He has it now, and a couple of things were missed. 

He saw that I have not been tested for copper deficiency and neuromyelitis optica, which he called NMO. I had not heard of that. I was starting to think that was nice, that maybe I have this NMO thing and not MS... until I googled it and realized that NMO is Devic's! Out of the frying pan and into the fire. 

So I have to have blood tests for those two things. Darn, wish they would have drawn a few extra tubes when I was there two days ago. He had me get my Vitamin D, Calcium, and something else checked. 

The other thing I need to do is get another MRI of my spine. The image quality was too poor due to magnet strength. He wants me to go to the place that has a 3T machine. 

He said that if my copper and NMO tests are normal, he is comfortable with an MS diagnosis. But they need to be ruled out. 

I am glad that he is thinking for himself and not just accepting the MS diagnosis given to me by Dr. Gabby. It stinks that treatment will be delayed for a couple more weeks because of this, but that is not long in the grand scheme of things. 

Meanwhile, my left leg is getting worse. I am losing sensation in it frequently--it goes numb when I am sitting. And for the first time (and second and third time, lol) I had a bit of bladder leakage. Not cool. 

At least my brain is better. When I realized I could once again hold a 10-digit phone number in working memory, I about fell over. Hopefully my brain is on the road to recovery, and this is not just an "MS ups and downs" tease. Nevertheless, I will take the good where it comes.

Sort of Rough Day But Happy

Sensory:

-Pins and needles: 3--right ankle/foot, left calf (outside)/ankle, left butt/thigh--sciatic nerve

-Tingles: 6--going up my some of my fingers and driving me CRAZY. Right thumb (middle), index (inside), pinky (outside), lateral side of hand (running down from pinky). Left pinky (outside), lateral side of hand, lateral half of palm. It started happening when I tried to cross stitch and has continued. And some in my left thigh.

-Paresthesias: 4, and I noticed the position of my leg can make it worse. It was 1-2 for much of today. Gabapentin increase is helping! I'm up to 1500 mg/day; tomorrow I will be on the full 1800 mg dose.

-Numbness: 2, my feet keep falling asleep easily. I guess that's numbness

-Vision: 2--probably a little worse from cross stitching

Motor:

-Gait: 3, but 5 on hardwood floors. Wow, that surprised me. I was at my bishop's house for conference, and they have wood floors in part of their home. It was much harder for me to walk on. Counting my blessings that my home has carpet (even though I wished for hardwood when I bought it--guess I got what was good for me rather than what I wanted).

-Sore muscles: 4 most of the day except for some 7 cramps in my left calf

-Fine motor: 4, cross stitching was hard

-Weak muscles: 4

Cognitive:

-Language processing: 1

-Memory: 1

-Attention: 0

-Confusion: 1

General:

-Fatigue: 6--I really wanted to sleep this afternoon, but I couldn't, because I was at the bishop's house. I probably wouldn't have even if I had been home. But wanted to. I felt worn out, and I don't think I did much. Hung out on the couch all morning except taking a shower and doing makeup and hair. Went to the bishop's house to sit and watch conference. I did play a board game that required brain power (and I won), and I think that wore me out. I was tired after that. Sat around and watched conference. Played Rock Band. Of course that really wore me out!

-Balance: 4

-Sleep: 3, got 8 hours

-Bladder: 3 I guess, still weak stream, and things just do not feel right

-Anxiety: 0

-Vertigo: 0, yeah!