We recently went to a conference for the United Mitochondrial Disease Foundation. I have not mentioned what illness I have up until now because I want this website to be open to anyone suffering with chronic anything...this article though is about my illness, mitochondrial disease. The blog is still of course, open to anyone and chronic anything.
Mito what? Those two words are very powerful. They are powerful, because I hear them a lot. I also at one point said them myself. But now, me and mito are good buddies. Mitochondrial disease is a rare disease that affects both children and adults in many different ways and in many different levels of severity. I predominantly have skeletal muscle and GI problems. I have tremendous fatigue and pain on a daily basis. I have what I call my "new good" days which is when I only feel tired and some pain, to other days where I am bed ridden and in a great amount of pain. There is no cure and really no treatment for this disease. There is also a lack of research, physicians, and general knowledge in the public about mitochondrial diseases. Mito what? I bet you might have said the same thing.
I want to bring awareness to the United Mitochondrial Disease Foundation. These are wonderful people who work to help families, create awareness and promote research. You can find out more about the disease and pass it on at http://www.umdf.org/ Breast cancer has a pink ribbon, we have a kelley green one. Breas cancer has big money, we don't. You can buy a pink toaster and donate money to Susan G. Komen, but to the UMDF? Buy a green toaster and you just have a cool green toaster. We need to have the awareness and finances of the wonderful Susan G. Komen Foundation, but we aren't there, YET.
So why did I title this article hanging up my dancing shoes? Well, I'm wondering if I have to (metaphorically). That is pretty pessimistic, or is it simply realistic? As many know, chronic illness robs a person of certain things in life depending on the illness and severity. I once was nicknamed the "Energizer Bunny" but now you can just call me the "pooped out princess, " or "Galactic Acid Girl" as we joke in my family*. I am learning that I have to conserve energy almost as if saving pennies to buy a gum ball. I save up bits of energy to do what I want...take my sons swimming, to the library, go out with friends, do crafts, have a date with my hubby, attend a wedding, even simply visit with a friend. It is weird to get used to this. I still am not. I think though as a part of healing my spirit, I need to accept that sometimes I need to hang up my dancing shoes. I will never be the same, so how do I cherish what I do have and use my energy best?
The answer: I don't know. I am learning my limits. I am also fighting my limits, which takes energy. I think I need to accept my limits and learn to thrive within them. Goodness, this isn't just hard for me, it is a full on war raging in my mind and spirit.
I get so fatigued, so easily that I can't fully participate in the things I want to. This makes me sad. I feel like I am missing out. It angers me. I feel like I let my children down. I feel ripped off. When I force myself to do things I don't have the energy for...I pay for it and so do those around me, many times for days. When I sit out, I spend energy being angry and upset. Acceptance...isn't that the key to all our problems? The 12 steps say so. What do you think?
So, what does is really mean to hang up my dancing shoes? Let's run with that metaphor a minute. If they are hung up, they aren't in a box, shoved in a corner. I sure can't stand to spend the rest of my life boxed in and parked on the couch. But my dancing shoes are hung up...that implies they get used sometimes. Notice, they are not on my feet, they are on a hook. But they are visible, waiting to be used at the right time and the right place. Sometimes I might have to let them get dusty. They might not look as worn as they used to. But when I get to put them on and "dance".....aaaaaahhhhhhhhh! The beauty of the moment is one to be cherished and remembered. I still have my dancing shoes and I can still enter the dance, but the dance has changed and I must change my heart and mind to go along with it.
Acceptance? Mito what? To dance or not to dance? These are monumental questions in my life. What are yours?
*A side note about Galactic Acid Girl. One night at dinner my youngest son asked "so you have too much galactic acid in your body that makes you tired and sore, right?" Oh, the words of a child! He meant Lactic Acid and he was right. I love the humor of calling myself "Galactic Acid Girl" a new superhero! Laughter is good medicine.
Wednesday, June 30, 2010
Tuesday, May 18, 2010
Submission NOT Resignation
In this article of Chronic Compassion I have taken liberty (in the parentheses and italics) to add a few comments that run through my head as I read this scripture. I hope you enjoy a short trip through my brain and the Bible. Well, at least I hope you don't get lost.
Isaiah 48:17-18
This is what the Lord says (I think this might be good to pay attention to if God says so) -Your Redeemer (for sure!), the Holy one of Israel (oh how I love the story of the Israelites. I consider them my ancestors by faith): "I am the Lord your God (yes you are!) who teaches what is best for you (when I actually listen. Sorry. I get so distracted), who directs you in the way you should go. If only you had paid attention to my commands (if only I had trusted you were giving me commands that would yield fruit through this season of chronic illness), your peace would have been like a river (peace...I have had the goal of peace in the midst of this life changing ordeal, but I have fought You so much. I love a small rushing river. The water sounds and looks so beautiful. The water moves without restraint, gliding over the bumpy paths of rocks, twists and turns. I've felt my journey has been more like climbing a mountain...trying so hard to make sense of the trail, climbing slopes too steep for my equipment, forgetting to stop and see the beauty, and resting only because I have to all the while missing the song of the crickets, frogs and silence), your well-being like the waves of the sea. (The ocean Lord...the place where you and I meet face to face. I find peace there. What a beautiful metaphor for me to consider. Thank you. I need to get to the ocean more often. I long for You. I want off the rocky, steep mountain I've been climbing and more time at the ocean where we once surfed together. I remember surfing although it seems so long ago. The waves would crash, but they felt like a blanket of your love covering me. You say my well-being can be like the waves of the sea? I love the waves of the sea Lord. They are guided by you, they have a rhythm and a purpose, but also have a way of being that no human can really predict. They bring beautiful things to the shore like shells, agates, wood and rocks. The waves curl and in that curl there is a cave of protection, which reminds me of king David seeking refuge. Though it seems chaos reigns on the outside, inside the curl there is beauty many don't chase to see, a quiet only you can create. The waves of the sea...are my destiny.)
Now...my reflections on my reflections. Lost yet? I hope not!
So how do I get off the mountain that I am not called to climb anyway? I want to find the water where I can find peace and well-being. I remember in the verse above, God saying something about paying attention to His commands because He is trying to teach me what's best for me and direct me in the way I should go. But so many times on this journey, I see where God is taking me and I don't want to go there. I want to go back...back to a life without pain and fatigue. Back to sleeping without medications. Back to an identity and profession I was proud of and worked hard for. Back to being able to be busy, stay up late, not get rest, yet still bounce back like nothing had happened. Back to a life where medical expenses didn't replace vacations. Back to hair appointments instead of doctor appointments. Back to when "things made sense and I knew who I was." Back to volunteering for my kids instead of volunteering blood samples and body tissues. Back to having some control, or at least thinking I did. Back to MY life...or do I?
MY LIFE (interesting to contemplate)...is now. I got it in my head that this obeying God and finding this peace in Isaiah 48 meant I had to RESIGN to a life of chronic illness. But at second look, I see that isn't the path to peace. The path is SUBMISSION. I submit to God's leading, teaching, direction and way. He, after all, is way, way smarter than I.
So, I simply and daily remind myself of the waters I dearly love that represent peace and well-being. One lesson, one direction, one moment at a time I seek His ways...and as the song goes~I trust and obey, for there is no other way. I will find peace and well-being when I trust and obey.
Isaiah 48:17-18
This is what the Lord says (I think this might be good to pay attention to if God says so) -Your Redeemer (for sure!), the Holy one of Israel (oh how I love the story of the Israelites. I consider them my ancestors by faith): "I am the Lord your God (yes you are!) who teaches what is best for you (when I actually listen. Sorry. I get so distracted), who directs you in the way you should go. If only you had paid attention to my commands (if only I had trusted you were giving me commands that would yield fruit through this season of chronic illness), your peace would have been like a river (peace...I have had the goal of peace in the midst of this life changing ordeal, but I have fought You so much. I love a small rushing river. The water sounds and looks so beautiful. The water moves without restraint, gliding over the bumpy paths of rocks, twists and turns. I've felt my journey has been more like climbing a mountain...trying so hard to make sense of the trail, climbing slopes too steep for my equipment, forgetting to stop and see the beauty, and resting only because I have to all the while missing the song of the crickets, frogs and silence), your well-being like the waves of the sea. (The ocean Lord...the place where you and I meet face to face. I find peace there. What a beautiful metaphor for me to consider. Thank you. I need to get to the ocean more often. I long for You. I want off the rocky, steep mountain I've been climbing and more time at the ocean where we once surfed together. I remember surfing although it seems so long ago. The waves would crash, but they felt like a blanket of your love covering me. You say my well-being can be like the waves of the sea? I love the waves of the sea Lord. They are guided by you, they have a rhythm and a purpose, but also have a way of being that no human can really predict. They bring beautiful things to the shore like shells, agates, wood and rocks. The waves curl and in that curl there is a cave of protection, which reminds me of king David seeking refuge. Though it seems chaos reigns on the outside, inside the curl there is beauty many don't chase to see, a quiet only you can create. The waves of the sea...are my destiny.)
Now...my reflections on my reflections. Lost yet? I hope not!
So how do I get off the mountain that I am not called to climb anyway? I want to find the water where I can find peace and well-being. I remember in the verse above, God saying something about paying attention to His commands because He is trying to teach me what's best for me and direct me in the way I should go. But so many times on this journey, I see where God is taking me and I don't want to go there. I want to go back...back to a life without pain and fatigue. Back to sleeping without medications. Back to an identity and profession I was proud of and worked hard for. Back to being able to be busy, stay up late, not get rest, yet still bounce back like nothing had happened. Back to a life where medical expenses didn't replace vacations. Back to hair appointments instead of doctor appointments. Back to when "things made sense and I knew who I was." Back to volunteering for my kids instead of volunteering blood samples and body tissues. Back to having some control, or at least thinking I did. Back to MY life...or do I?
MY LIFE (interesting to contemplate)...is now. I got it in my head that this obeying God and finding this peace in Isaiah 48 meant I had to RESIGN to a life of chronic illness. But at second look, I see that isn't the path to peace. The path is SUBMISSION. I submit to God's leading, teaching, direction and way. He, after all, is way, way smarter than I.
So, I simply and daily remind myself of the waters I dearly love that represent peace and well-being. One lesson, one direction, one moment at a time I seek His ways...and as the song goes~I trust and obey, for there is no other way. I will find peace and well-being when I trust and obey.
Monday, January 18, 2010
Prisoner of Hope
Do you ever feel like a prisoner in your own body? Are you a prisoner to your illness, to pain, to hopelessness, to displacement, to fatigue, to financial burdens, to the difficult task of daily life with chronic illness? If you quickly said no…let’s think again. Let me rephrase, at times do you feel imprisoned by chronic illness or chronic pain? I do. There are days where I have felt claustrophobic in my own body…now how do you resolve that problem? You can’t just slip out of your skeleton for a while and try on a new one. At those times I just want a way out of the pain and fatigue; I want to run away from myself. But I can’t…so I know I have to find another way to deal with the claustrophobia-the imprisonment in my own body that doesn't work like I want it to. The only solution I can find is my Lord, Jesus…only he can set me free from a body that at times feels like a prison and not a blessing. I’m not talking about death, that will come in its time, but until then, how do I live…I mean REALLY LIVE! I’m not o.k. with living a boring, sick, self-centered life. I want to live. I want to be alive. What does that mean for you? I can share what that means for me.
As a counselor, I can say that one of our favorite tools is to teach people how to reframe their circumstances, to find a better way to view their situation that makes it manageable, or even fruitful. Right now it is 4:40 in the a.m. and I am not up because I want to be. It is just another night of insomnia, one battle I struggle with on this journey. But I finally got out of bed and decided to open my Bible and see what the Lord wanted to say to me, and maybe even you. I got a reframe, not from an earthly counselor, but from the counselor of counselors, our Lord Jesus himself. It came via the prophetic words of Zechariah. Are you ready for it?
Zechariah 9:12 says “Return to your fortress, you prisoners of hope; even now I announce I will restore twice as much to you.” (NIV)
Prisoners of hope? I had to pause there. What does that mean anyway? Then I thought of how I feel imprisoned by my body at times and shazzam (!) there was a reframe. I am a very hope filled person generally, but when I feel trapped in my broken body and tough circumstances I sink into hopeless pretty quickly. Instead, now I can turn my thoughts to my fortress (my Lord) and become a prisoner of hope in Him and his promise that he will return to me twice as much (I won't even attempt to guess what that may mean).
I love that phrase…”you prisoners of hope,” it just stopped me. It was so unexpected. But as I ponder it more and more, I realize I am a prisoner of hope. In Zechariah 10, the prophet reminds us to pray to the Lord for our needs because he is our creator and knows us intimately. We can pray for healing, financial burdens to be lifted, more energy, a day without pain, but most of all we can ask that he make his presence real to us, so that if we are a prisoner to something, at least we are imprisoned by Hope in Him! Prisoner of hope? You bet, sign me up!
As a counselor, I can say that one of our favorite tools is to teach people how to reframe their circumstances, to find a better way to view their situation that makes it manageable, or even fruitful. Right now it is 4:40 in the a.m. and I am not up because I want to be. It is just another night of insomnia, one battle I struggle with on this journey. But I finally got out of bed and decided to open my Bible and see what the Lord wanted to say to me, and maybe even you. I got a reframe, not from an earthly counselor, but from the counselor of counselors, our Lord Jesus himself. It came via the prophetic words of Zechariah. Are you ready for it?
Zechariah 9:12 says “Return to your fortress, you prisoners of hope; even now I announce I will restore twice as much to you.” (NIV)
Prisoners of hope? I had to pause there. What does that mean anyway? Then I thought of how I feel imprisoned by my body at times and shazzam (!) there was a reframe. I am a very hope filled person generally, but when I feel trapped in my broken body and tough circumstances I sink into hopeless pretty quickly. Instead, now I can turn my thoughts to my fortress (my Lord) and become a prisoner of hope in Him and his promise that he will return to me twice as much (I won't even attempt to guess what that may mean).
I love that phrase…”you prisoners of hope,” it just stopped me. It was so unexpected. But as I ponder it more and more, I realize I am a prisoner of hope. In Zechariah 10, the prophet reminds us to pray to the Lord for our needs because he is our creator and knows us intimately. We can pray for healing, financial burdens to be lifted, more energy, a day without pain, but most of all we can ask that he make his presence real to us, so that if we are a prisoner to something, at least we are imprisoned by Hope in Him! Prisoner of hope? You bet, sign me up!
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