I have always heard that "God will never give you more than you can handle," and there are two opposing ways to look at it: Sometimes that is good news, sometimes it is not. After all, who wants to be tested? I would never chose to be driven to the point where I end and my Higher Power has to take over. One of the good things about that sort of testing is it can improve my relationship with God. But what happens once the test is finished?
Showing posts with label Courage to Change. Show all posts
Showing posts with label Courage to Change. Show all posts
Sunday, April 10, 2011
Tuesday, November 9, 2010
Good days, bad days
Tuesday, November 9, 2010 1:26 PM
Today, I am so exhausted I can barely sit up and type. I couldn't catch my breath in physical therapy and cut the session short. I also stumbled three times this morning, but no falls.
Good Days, Bad Days is the name of a book I got about dealing with chronic illness, but haven't read much of it. What I did learn was that recovery in an uneven process, some times things will be great, sometimes not so great.
Today, I decided while waiting for my physical therapist to get my chair, is a bad day. After over 5 of good days, I am due. After all, how can we evaluate the good without some bad to hold up next to it?
I thought, I've had my seven years of plenty, and now is it time for the seven years of lean? But then I remembered that I had my lean years first, those months I spent getting weaker and weaker until I became paralyzed.
And how did I get through those dark times? One day at a time, not worrying about the future, just concentrating on the now and leaving the details to God.
Today, I am so exhausted I can barely sit up and type. I couldn't catch my breath in physical therapy and cut the session short. I also stumbled three times this morning, but no falls.
Good Days, Bad Days is the name of a book I got about dealing with chronic illness, but haven't read much of it. What I did learn was that recovery in an uneven process, some times things will be great, sometimes not so great.
Today, I decided while waiting for my physical therapist to get my chair, is a bad day. After over 5 of good days, I am due. After all, how can we evaluate the good without some bad to hold up next to it?
I thought, I've had my seven years of plenty, and now is it time for the seven years of lean? But then I remembered that I had my lean years first, those months I spent getting weaker and weaker until I became paralyzed.
And how did I get through those dark times? One day at a time, not worrying about the future, just concentrating on the now and leaving the details to God.
Tuesday, October 12, 2010
Do nothing 'til you hear from me
Friday, October 8, 2010
The topic of last Wednesday's Ala-non meeting was courage, as in courage to change, the name of one of the Ala-non daily devotional books. I know quite a bit about courage, or more exactly, the lack of courage; a few years ago, I would find myself gripped by fears about the uncertainty of the future. These episodes would cripple me, occupying my mind for hours. Going to meetings, reading the literature, and working with a sponsor helped me get through this difficult period. I learned several tools that helped me then and they are helping me now to deal with my CIDP.
The first tool is courage to let things go, to trust there are many problems that I’m not supposed to solve and that this is alright. I have to recognize that others have their Higher Power, who is leading them to discovery at their own pace, not mine.
Adrienne carried an unbearable burden while I was in the hospital and bedridden at home. Knowing she was doing all this hard work to help me was terrible. But I couldn't help her. Trying to do more than I was capable was not only a failure, but dangerous. I had to trust that she would see herself through this and we would both be alright.
The next tool is the courage to make mistakes. Trying something and failing was a sign of weakness and vulnerability. Therefore, it takes courage to try new things or things that I have failed at. If I stop trying new things because I am afraid of failing, I have stopped growing. I have had plenty of failures, but through God's grace, many of those failures have already turned into victories.
Writing is a good example of this; ever since I could write, I have taken great joy in using words on paper to express and communicate. I thought I was pretty good at it until it was explained to me that I wasn't as good as I thought. I could have worked to improve my skills, but instead I didn't write a thing for many years. I thought that if I couldn't be perfect, then I would be nothing.
I started writing in the hospital to pass time and help me process what was happening. I also hoped that people close to me would read it to get information about my condition. Publishing a couple of blog posts a month isn't going to make me a great writer, but it is making me a better writer.
Lastly, the courage to say I can't do it myself-I need help. Asking for help truly is a sign of strength.
While in the Drake Center, my roommate Steve and I were talking about how it felt to one day be healthy, then the next need so much help. “It's humbling,” he told me.
Humbling is right. I survived all sorts of things I never thought I would. But I didn't have to do it alone. God surrounded me with love and protection. To all the people who brought that to me, you were emissaries of God, carrying His message and doing His work for Him.
When faced with a situation where I would have responded by using unkind words, or tried to force my solution on others, or any other of my unsuccessful strategies, I pray to my Higher Power for guidance.
I seldom get a dramatic response; 99% of the time, I don't get any discernible response at all, so I do nothing. I keep my mouth shut and wait patiently for resolution to come from a different source, and it always comes.
When people want to talk about my recovery, I have to give credit where it is due and say, “God is good all the time.”
All the time, God is good.
Tuesday, October 12, 2010
Thursday, April 29, 2010
What fresh and hell is this?
Wednesday, April 28
Today is my third day of therapy and my arms (and my legs and my butt) are tired. Last night was the first night I slept without a sleeping pill since I went to University Hospital on April 12.
So I am very tired. I’m also excited about the new things I’ve done. Yesterday, with the help of a machine, I was able to stand up. Not only did I stand up but I also did some exercises while standing. And this morning, I took an honest to God shower in a shower chair as part of my occupational therapy. It took me nearly 2 ½ hours to shower, get dressed, and do the rest of my morning routine. It very challenging, especially getting dressed in my chair.
I find it very hard to balance in a chair. Leaning too far frightens me. I also discovered that I don’t trust my arm strength any longer. This means that if I start to fall I might not be able to stop myself.
But I really loved taking a shower this morning. Brushing my teeth and shaving in the bathroom produced a feeling of euphoria in me. There’s a big difference in the way my face appears in the mirror when I’m sitting up and when in bed. My face is leaner, not so chubby like when I’m on my back.
In yesterday’s occupational therapy I lifted weights and threw a ball. These tasks were to increase my arm strength. And they quickly wore me out.
It is frustrating because there’s so little that I can do myself. In my heart I still feel like I should be able to walk or put my socks on. What I really want to do most is stand up and pull my pants and underwear up around my hips where they belong. I would also like to sleep on my side, touch my toes, throw something, use a toilet or sit down some where and not have to worry about how I am going to get back up.
All that stuff is beyond my reach. Doing things like adjusting my clothes or even getting dressed is difficult in bed where I’m flat on my back. Add the element of gravity by sitting me in a chair and they are almost impossible.
My greatest nemesis appears to be the bedside commode. I will not be walking when I leave the Drake Center. That means our house is going to require some modifications to make the house wheelchair accessible. Then we have to answer the question of how I’m going to clean myself and use the toilet from my wheelchair. One of the goals in front of me is to learn how to transfer from a wheelchair to a shower chair or a commode. Then I’m going to have to be able to pull my pants down. This will involve leaning. Leaning requires strength to support myself with my arms and that scares me.
In the Today’s Reminder from today’s Courage to Change, the author points out that fear is often a signal that there something we need to learn. All of this fear that I’ve been feeling today is because I have so much to learn.
Today is my third day of therapy and my arms (and my legs and my butt) are tired. Last night was the first night I slept without a sleeping pill since I went to University Hospital on April 12.
So I am very tired. I’m also excited about the new things I’ve done. Yesterday, with the help of a machine, I was able to stand up. Not only did I stand up but I also did some exercises while standing. And this morning, I took an honest to God shower in a shower chair as part of my occupational therapy. It took me nearly 2 ½ hours to shower, get dressed, and do the rest of my morning routine. It very challenging, especially getting dressed in my chair.
I find it very hard to balance in a chair. Leaning too far frightens me. I also discovered that I don’t trust my arm strength any longer. This means that if I start to fall I might not be able to stop myself.
But I really loved taking a shower this morning. Brushing my teeth and shaving in the bathroom produced a feeling of euphoria in me. There’s a big difference in the way my face appears in the mirror when I’m sitting up and when in bed. My face is leaner, not so chubby like when I’m on my back.
In yesterday’s occupational therapy I lifted weights and threw a ball. These tasks were to increase my arm strength. And they quickly wore me out.
It is frustrating because there’s so little that I can do myself. In my heart I still feel like I should be able to walk or put my socks on. What I really want to do most is stand up and pull my pants and underwear up around my hips where they belong. I would also like to sleep on my side, touch my toes, throw something, use a toilet or sit down some where and not have to worry about how I am going to get back up.
All that stuff is beyond my reach. Doing things like adjusting my clothes or even getting dressed is difficult in bed where I’m flat on my back. Add the element of gravity by sitting me in a chair and they are almost impossible.
My greatest nemesis appears to be the bedside commode. I will not be walking when I leave the Drake Center. That means our house is going to require some modifications to make the house wheelchair accessible. Then we have to answer the question of how I’m going to clean myself and use the toilet from my wheelchair. One of the goals in front of me is to learn how to transfer from a wheelchair to a shower chair or a commode. Then I’m going to have to be able to pull my pants down. This will involve leaning. Leaning requires strength to support myself with my arms and that scares me.
In the Today’s Reminder from today’s Courage to Change, the author points out that fear is often a signal that there something we need to learn. All of this fear that I’ve been feeling today is because I have so much to learn.
Friday, April 23, 2010
New developments
Wednesday, April 21, 2010.
Things seem to be moving forward. I had my fourth plasmapheresis treatment today and I will have my fifth one tomorrow. Friday they will take out my catheter and I will be ready to move to the next phase of my recovery; going to inpatient rehabilitation at the Drake Center.
Alex arrived last night. Adrienne and I are glad to see him, we’re touched by his willingness to come back to Ohio and help out during the next few weeks. His willingness to come back is a great blessing to me.
The last two days have been very exciting for me. Working with the physical therapy and occupational therapy departments at the hospital, I have attempted to do things that I haven’t been able to do for weeks like putting on a pair of shorts or sitting on the toilet. I have been able to get in and out of bed.
A month ago, I was doing all of those things on my own. As scary as it is that think about how fast I declined, it is even scarier to think about how hard it will be to climb back up again. As long as I kept my mind occupied, it was easy to lie in bed. But now comes a part of my recovery where I’m going to actually have to physically work to make gains. The road ahead appears to be very steep, very rocky and fraught with potholes.
I got a glimpse of how challenging this is going to be today. Transferring to the commode from my chair, I became scared. I felt nauseated and I could feel my heart beat faster. It hurt to sit up and I forgot to use the rails to support myself. While moving back to my wheelchair, the board I was using for the transition shifted and I was afraid I was going to fall. The occupational therapist was right there and she had me tethered.
In my copy of Courage to Change I’ve written some definitions of the word fear:
It is now Friday morning. The last few days have been crazy.I am very grateful to the staff here at University Hospital. I feel they have got me started on the right path. I don’t know when I will be able to write again. Please wish me well and continue to hold Adrienne and me in your prayers/thoughts.
Things seem to be moving forward. I had my fourth plasmapheresis treatment today and I will have my fifth one tomorrow. Friday they will take out my catheter and I will be ready to move to the next phase of my recovery; going to inpatient rehabilitation at the Drake Center.
Alex arrived last night. Adrienne and I are glad to see him, we’re touched by his willingness to come back to Ohio and help out during the next few weeks. His willingness to come back is a great blessing to me.
The last two days have been very exciting for me. Working with the physical therapy and occupational therapy departments at the hospital, I have attempted to do things that I haven’t been able to do for weeks like putting on a pair of shorts or sitting on the toilet. I have been able to get in and out of bed.
A month ago, I was doing all of those things on my own. As scary as it is that think about how fast I declined, it is even scarier to think about how hard it will be to climb back up again. As long as I kept my mind occupied, it was easy to lie in bed. But now comes a part of my recovery where I’m going to actually have to physically work to make gains. The road ahead appears to be very steep, very rocky and fraught with potholes.
I got a glimpse of how challenging this is going to be today. Transferring to the commode from my chair, I became scared. I felt nauseated and I could feel my heart beat faster. It hurt to sit up and I forgot to use the rails to support myself. While moving back to my wheelchair, the board I was using for the transition shifted and I was afraid I was going to fall. The occupational therapist was right there and she had me tethered.
In my copy of Courage to Change I’ve written some definitions of the word fear:
Face Everything and Recover,
Fake Evidence Appearing Real,
and the newest one, Future Events Are Not Real.
I write this blog to help me process these things. It is helpful to be reminded that I am not alone, there is a power greater than me that will see me through today.Fake Evidence Appearing Real,
and the newest one, Future Events Are Not Real.
It is now Friday morning. The last few days have been crazy.I am very grateful to the staff here at University Hospital. I feel they have got me started on the right path. I don’t know when I will be able to write again. Please wish me well and continue to hold Adrienne and me in your prayers/thoughts.
Monday, April 19, 2010
Acceptance and Hope
The doctors haven’t seen much improvement in my strength level. On the other hand I don't seem to be getting weaker anymore. If I don't start showing improvement, the doctors will put me on immune suppressing steroids or chemotherapy.
I had my third plasmapheresis treatment today. My neurologist told me that sometimes Guillain-Barre Syndrome returns after the initial treatment. He believes this may be the case, although as always he is guarded.
This could be really good news because of all the possible diagnoses that I could have, Guillain Barre Syndrome is the most recoverable.Have it once, get physical therapy, continue life as before. He also was quick to point out that if it return later, such as the next year or ten years, it is not Guillain Barre.
The next step would be to go to a rehabilitation hospital, like nearby Drake Center. That might happen by this Friday. At Drake they would teach me to take care of myself. I understand that there is a doctor there who specializes in neuromuscular rehabilitation and he seems well respected by the neurologists here. While the thought of being permanently disabled is scary, when I think about what my physical therapy could be like, I get weak in the knees and feel a little nauseous. The physical therapist I have been working with here used the term "gruesome" to describe it.
However, weather is beautiful today and I was able to get into the wheelchair and go outside for an hour. The sun was glorious. Adrienne and I felt freed enough to talk about the future. It’s hard to think about the future because the present is so uncertain. What do I have? Am I getting better? Is the plasmapheresis working? There’s so little that we know for sure.
I know that I am supposed to live my life one day at a time. But what do I do when I have to think about the future? This weekend I had a very interesting discussion about acceptance and hope with mys sponsor. Acceptance is about the now. Sometimes it is called "being in the moment." The moment is not always pleasant, such as when there is an unpleasant but irrefutable truth to be faced.
Hope is for the future. It is the opposite of acceptance because instead of grappling with something I can't avoid, I can close my eyes and pray about what I want.
When I experience hope, I am giving myself permission to look at things I can’t control and ask for the best outcome. I usually fret about the future and waste plenty of energy on worry. The trap for me is to remember that just because I don’t know what the future holds, it doesn’t mean that has to be bad. I need to leave room in my heart for hope that tomorrow will be better than today. I also need to remember that today may not be the day I had hoped for but it is the only day I’ve been given and it too will pass.
Monday, April 18, 2010.
I had my third plasmapheresis treatment today. My neurologist told me that sometimes Guillain-Barre Syndrome returns after the initial treatment. He believes this may be the case, although as always he is guarded.
This could be really good news because of all the possible diagnoses that I could have, Guillain Barre Syndrome is the most recoverable.Have it once, get physical therapy, continue life as before. He also was quick to point out that if it return later, such as the next year or ten years, it is not Guillain Barre.
The next step would be to go to a rehabilitation hospital, like nearby Drake Center. That might happen by this Friday. At Drake they would teach me to take care of myself. I understand that there is a doctor there who specializes in neuromuscular rehabilitation and he seems well respected by the neurologists here. While the thought of being permanently disabled is scary, when I think about what my physical therapy could be like, I get weak in the knees and feel a little nauseous. The physical therapist I have been working with here used the term "gruesome" to describe it.
However, weather is beautiful today and I was able to get into the wheelchair and go outside for an hour. The sun was glorious. Adrienne and I felt freed enough to talk about the future. It’s hard to think about the future because the present is so uncertain. What do I have? Am I getting better? Is the plasmapheresis working? There’s so little that we know for sure.
I know that I am supposed to live my life one day at a time. But what do I do when I have to think about the future? This weekend I had a very interesting discussion about acceptance and hope with mys sponsor. Acceptance is about the now. Sometimes it is called "being in the moment." The moment is not always pleasant, such as when there is an unpleasant but irrefutable truth to be faced.
Hope is for the future. It is the opposite of acceptance because instead of grappling with something I can't avoid, I can close my eyes and pray about what I want.
When I experience hope, I am giving myself permission to look at things I can’t control and ask for the best outcome. I usually fret about the future and waste plenty of energy on worry. The trap for me is to remember that just because I don’t know what the future holds, it doesn’t mean that has to be bad. I need to leave room in my heart for hope that tomorrow will be better than today. I also need to remember that today may not be the day I had hoped for but it is the only day I’ve been given and it too will pass.
Monday, April 18, 2010.
Saturday, March 27, 2010
Good news I forgot about until the middle of the night
Last Saturday, in the hospital, the neurologist tested the reflexes in my legs and called them "dead." Yesterday in Oxford, when Dr. Hoke tested them, they both twitched! I was so preoccupied by obsessing on how long the recovery will take, I completely forgot that the process has already begun.
This was one of the things that came to me early this morning while I was trying to get back to sleep. Another thing that came to me was how much I am enjoying doing this. It is hard work; nothing flows. But I like what I have done so far. I also like the fact that it is not perfect, but I can press the "Publish Post" button anyway.
I figure about 95% of the time, I am letting perfectionism, procrastination, or paralysis hold me back. I have been learning that I don't have to be spot on perfect, or even 100% right in everything I do. After all, I am a work in progress, so why shouldn't my every day life reflect progress (a fourth P!). Making mistakes is a part of life, so I should embrace my errors. This way, I can reduce the chances of making the same mistake twice. My friend Jutta told me that she learned to say say "Thank you for teaching me" to her mistakes.
A friend in school once told me that if I was having trouble saying something, it might be because it isn't clear in my mind what I want to say. A lot of what I do is write things down, then go back and try to make it coherent. This is where I get a chance to really learn the lessons that I've read about or gotten from talking with others.
A last piece of good news-I made it to my first meeting in 2 weeks today.
This was one of the things that came to me early this morning while I was trying to get back to sleep. Another thing that came to me was how much I am enjoying doing this. It is hard work; nothing flows. But I like what I have done so far. I also like the fact that it is not perfect, but I can press the "Publish Post" button anyway.
I figure about 95% of the time, I am letting perfectionism, procrastination, or paralysis hold me back. I have been learning that I don't have to be spot on perfect, or even 100% right in everything I do. After all, I am a work in progress, so why shouldn't my every day life reflect progress (a fourth P!). Making mistakes is a part of life, so I should embrace my errors. This way, I can reduce the chances of making the same mistake twice. My friend Jutta told me that she learned to say say "Thank you for teaching me" to her mistakes.
A friend in school once told me that if I was having trouble saying something, it might be because it isn't clear in my mind what I want to say. A lot of what I do is write things down, then go back and try to make it coherent. This is where I get a chance to really learn the lessons that I've read about or gotten from talking with others.
A last piece of good news-I made it to my first meeting in 2 weeks today.
Thursday, March 25, 2010
Perspective
When I stop living in the moment, I lose perspective. Things that are very far away seem close and tiny things appear to be huge. Then it is easy to get over whelmed and start feeling hopeless and depressed, etc.
I sent an email to my friend Duane about the indignities of being in the hospital, expecting him to commiserate with me. He was in the hospital last weekend dealing with his own health issues. Here is part of what he wrote back:
“The funny thing about being in the hospital is that it is so easy to think that whatever is happening to you is the worst thing ever until you hear the guy next to you working on his will with his wife because the doctors aren't sure if he will survive the brain surgery to remove the tumor that has returned.”
His reply reminded me that I was letting little things get in my way instead of placing them in their proper perspective. By focusing on the little things, I was neglecting what really important.
One of the first things I learned in Ala-non is to be gentle with myself. Making mistakes is inevitable. Berating myself for making them is not. Living is about discovery. In order to discover things, I need to be actively involved in life. And that means that sometimes I will start down a a wrong path before discovering the right one.
I had forgotten that my prognosis is good-all the doctors have told me to expect a complete recovery. What I was experiencing was necessary to achieve that goal.
Courage to Change reminds me to take it “one task, one step, one day at a time.” By focusing on getting through the moments instead of wishing they weren't happening, I get closer to where I am going. To get through those difficult moments, I have my Higher Power and the tools of He has given me.
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