I've been reading information from the National MS Society (great website) off and on this afternoon. It's fine sometimes and upsetting sometimes.
When it talks about managing problems that I haven't encountered, I feel anxiety and fear. And when I noticed that many of the people in the bright, happy MS people pictures were in wheelchairs, I became very upset. I cried. I was just thinking that I don't want MS.
When it talks about managing problems that I have now, I am calm and extremely interested. I want the advice. The article on sleep disturbances was great. It looks like I'm already doing some things right, like using visualization. I'll try others. And my instinct that I don't know if I should accept pharmaceuticals (if they're even offered) seems to have been a good one.
Aside from that, I had an alright day. I was pretty tired despite lying on the couch all day. I did get up and make dinner--pork chops, mm. Although I can now sit up for more than 20 minutes, I get a spinal headache when I do. So I've been lying down all day. I did drink an ounce or two of Red Bull when it was really bad, and I've taken ibuprofen all day.
I really wanted to take a walk today, because I've been cooped up in the house for three days now. I'm so bored. This evening I went for a walk around the block with my sister and friend. Unfortunately I overdid it. We slowly walked for about 20 minutes, and I was having trouble keeping moving after the first 10. I arrived home and collapsed. I felt so sick. I think I will not exercise again until I'm out of this exacerbation.
Maybe coincidentally, maybe not, I've been struggling with spastic muscles this evening. My calves are the worst, feeling half clenched all the time and sometimes fully clenched. Quick spasms. It's not terribly painful, just very uncomfortable. I got my friend to massage my calves for a while, which helped. Then I tried massaging myself, because my right leg needed more, but that tired out my arms. That makes me laugh.
I'll be tearing my hair out tomorrow, because I don't have to work due to power outages in the area. I really wanted to go to work tomorrow, to take my mind off the MS, to see some little people that I love, and to give me something to do. I don't want to be bored, because I'm afraid I'll get depressed. But I can't do anything right now!
Showing posts with label learning more. Show all posts
Showing posts with label learning more. Show all posts
Sunday, August 28, 2011
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?
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?
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