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The itch of restlessness....
Today's word of the day: restless. Some days I just wake up and I feel like I slept in a bed of ants. The only solution to this, normally, is to allow myself to sit in silence for a while. Today after a very unfocused yoga session, while attempting to meditate I scratched my head, face, neck, arms, etc 100 times in 20 minutes. So much for sitting in silence.
Inhale. Exhale.
What does one do when they can't even do the one thing that always calms them? Well, the high school runner in me just felt the itch, literally, to run. Well, it's not like I can just leave to go run the neighborhood, I tried owning a treadmill once; that ended up being a laundry rack. So, what's a girl to do when she needs to release some energy?
She runs, back and forth on her deck until she can't run anymore. The dogs both running with me confused as to why I'm just running to run and not trying to chase a squirrel or one of our many backyard pets. I ran for about 20 minutes laughing at myself tripping over the dogs, watching Steve the several times I passed the french doors in our bedroom give me the look of confusion. He's in there thinking, "Now what's that woman of mine out there doing now?"
I was spending about 30 minutes after I attempted to meditate trying to determine, what I needed to calm me, what I should blog on, what I needed to do with my day, etc; and then when I let all the "what SHOULD I be doings" all go, and just started running, it became clear to me.
Let go Hope. I just kept thinking it over and over. Let go. Let go.
This past hospital visit, I was kindly named the control freak. :) It's okay to be the hovering caregiver, especially when I'm his biggest advocate; but to try to control EVERYTHING in life, is not working. I was trying to CONTROL the energy rather than letting it go.
Of course, releasing control of things doesn't mean becoming lax and not taking care of my responsibilities. A friend of mine came to visit this past week, and she said to me something she read, "Instead of giving yourself a list of things you SHOULD be doing, think of it as if I really wanted I could do this today." To start seeing myself as capable of doing the things, and releasing some pressure. Realizing that most of the course of the day is out of my control, and what I do have control of is my reactions.
So there you have it. Unconventional running mornings for the win.
What do you need to let go of? I'm sure I'm not alone here. Share with me, if you're up for it. xox
Listening to your feelings, to navigate your need for balance.
We have an owl that lives in our backyard, and today while I was reading my earth medicine daily readings, I heard the owl talking to me. So I stopped and really focused on what I was reading and it said, "The will is directed by our emotions and intuitive feelings, When we are cut of from these feelings, we enter a state of confusion."
Something that life continues to teach me, is that without balance, I will be knocked off my path. When I'm in the flow, and I'm too focused on going, doing, creating, making, helping, doing, going, going, going....I always end up somewhere off path, lost searching around surrounded by trees and no clear idea how I got there; confused, unfocused, and frustrated. However, if I remember to find the balance of work and play, flow and pause, going and stopping; I can enjoy the beauty along the path without getting lost so many times. If I trust my feelings and allow them to determine the pace, I find myself focused, happy, peaceful, healthy, and all the good adjectives.
I have become pretty clear on what I want my life to be, and I've gotten pretty in tune with my self, that if I really stop and listen to what I'm feeling, it guides me. My biggest challenge I will have to overcome is that when I'm feeling overwhelmed instead of taking a break; I forge on through. Because, to me taking a break sometimes is making excuses. I should be doing this, I have all this to do, I want to be doing all this, ideas, needs, responsibilities, .... Then I reach the not so pretty crash and burn further down after weeks or months not listening to that need for a breather. It's a cycle, that is up to me to put an end to.
If I actually stay in tune to myself instead of trying to allow others to determine my flow of life, I find myself in my favorite day dream. Okay, let me paint it for you. :)
If any of you are Incubus fans, this song is playing, Aqueous Transmission. I'm laying safe on a raft and floating down a river, perfect flow. I see what's going on around me, I can process it & feel it. I grow, I learn, and I make impact on people I'm passing by. Life seems to flow to the pace that serves me best, and even when the rapids get rough, I'm strong enough to hold on.
I am starting to listen. Yesterday we ended up having to turn Steve twice, and I really felt depleted and sick going to bed last night. I had a mental fog, sore throat, and barely any energy. I turned off my alarm, and slept until 8:30 today. Which, I haven't done in a few months. I value my morning time, so I'm usually up and going by 6:30. That extra sleep helped any signs of the sickies coming to go away, as well as helped me regain some focus. Life is all about paying attention to your feelings to keep your balance.
Learning to better use my energy and time, will ultimately be the biggest thing I learn in life. Yeah, you read that correctly. I have so much I want to do in life, and learning how to keep my balance while I strive; is how I'll make the impact on the world, that I can do. Listen to your inner self because your intuition is always there to guide if, if you just tune in.
Something that life continues to teach me, is that without balance, I will be knocked off my path. When I'm in the flow, and I'm too focused on going, doing, creating, making, helping, doing, going, going, going....I always end up somewhere off path, lost searching around surrounded by trees and no clear idea how I got there; confused, unfocused, and frustrated. However, if I remember to find the balance of work and play, flow and pause, going and stopping; I can enjoy the beauty along the path without getting lost so many times. If I trust my feelings and allow them to determine the pace, I find myself focused, happy, peaceful, healthy, and all the good adjectives.
I have become pretty clear on what I want my life to be, and I've gotten pretty in tune with my self, that if I really stop and listen to what I'm feeling, it guides me. My biggest challenge I will have to overcome is that when I'm feeling overwhelmed instead of taking a break; I forge on through. Because, to me taking a break sometimes is making excuses. I should be doing this, I have all this to do, I want to be doing all this, ideas, needs, responsibilities, .... Then I reach the not so pretty crash and burn further down after weeks or months not listening to that need for a breather. It's a cycle, that is up to me to put an end to.
If I actually stay in tune to myself instead of trying to allow others to determine my flow of life, I find myself in my favorite day dream. Okay, let me paint it for you. :)
If any of you are Incubus fans, this song is playing, Aqueous Transmission. I'm laying safe on a raft and floating down a river, perfect flow. I see what's going on around me, I can process it & feel it. I grow, I learn, and I make impact on people I'm passing by. Life seems to flow to the pace that serves me best, and even when the rapids get rough, I'm strong enough to hold on.
I am starting to listen. Yesterday we ended up having to turn Steve twice, and I really felt depleted and sick going to bed last night. I had a mental fog, sore throat, and barely any energy. I turned off my alarm, and slept until 8:30 today. Which, I haven't done in a few months. I value my morning time, so I'm usually up and going by 6:30. That extra sleep helped any signs of the sickies coming to go away, as well as helped me regain some focus. Life is all about paying attention to your feelings to keep your balance.
Learning to better use my energy and time, will ultimately be the biggest thing I learn in life. Yeah, you read that correctly. I have so much I want to do in life, and learning how to keep my balance while I strive; is how I'll make the impact on the world, that I can do. Listen to your inner self because your intuition is always there to guide if, if you just tune in.
Specifics.
For those that follow my blog, you notice I took my social media cleanse to total silence half way through, which ultimately was interrupted by a hospital visit. Well, I'm back. :)
As I'm slowly easing back into a routine, that I loose even with such a short hospital visit; I am slowly clearing the hospital/sleep deprived/anxious fog. I want to start this blog with some gratitude:
1. Steve didn't want to go to the hospital, but after a full night and morning of this anxiety/breathing stuff he decided it was time to go. He didn't have to change his mind, but I'm so thankful he did. We were able to get a lot done in the hospital, that helped ease my mind of a lot of unknown. It's a beautiful blessing to me and all who get to witness his journey the determination he shows, while showing up with love and kindness and a smile through it all.
2. On this same topic, the hospital staff all understand Steve's wishes to be home, and they hustled. If you follow facebook you saw all he had done, but here is a list for those who want to know. Trache change, discovering a collapsed right lobe in lung (chronic pneumonia & ALS), vent setting changes, bronchoscopy, picc line change, cultures on everything (literally), discovering new infections, removal of ingrown infected toenail, wound care, ultra sounds, new foley catheter, list of new orders to make life easier at home, & a blood transfusion. Also, they never give up on us, no matter how many complications we add to the list they are always willing to work through everything with us.
3. My in laws for all their help the past month or so. Lots has been happening that requires a load of extra help. When our list of people to call on becomes less and less, despite them being in their 70s are there at the drop of a hat to help me with Steve. Often days, when I have NO one else. Literally.
4. Our home health team (pharmacy, nursing, aid, & respiratory): ya'll always ride the waves with us. We couldn't do this journey with out you.
5. Wrap it up with a thank you to those who step up when we are sinking. Without hesitation or excuses you come to our aide. There's too many to list, but you know who you are.
As I continue to get Steve and I settled, and we incorporate some new things into our routine, my main focus will be researching ways to rid these infections. What once was a colonized lung infection has started spreading to multiple areas. Is it alarming? Of course. I won't sugar coat it. There were no words needed in the hospital as the cultures began growing more and more, everyone's faces read what they needed to say. No one wants to see Steve have more battle added to his list. It's just a lot, and it's hard.
So yes I am feeling that reality, but I will not give up hope. Just as Steve is still doing his best to live life on his terms, as he's shining that light from within; I will do my best to help ease some of the burden on his body. As a caregiver, I used to feel the need to defend myself with outsiders on why this was happening to Steve. I would constantly explain my actions, and feel like I had something to prove to everyone. If I'm honest I don't know why I'm writing this in past tense. Before leaving for the hospital I begged Steve to finally let me wash his hair, because I didn't want to deal with all the judgmental stares and comments. Of course, he was too sick to worry about his hair, and my ego needed to take a back seat. There were indeed a few comments, but mostly as I worked hard to change my perspective I was able to see that it's all me.
Truth is, much of why things happen to Steve is unknown, and much is the fact that because he has gastroparesus and doesn't get to eat real food; his body can only do so much. An Ayurvedic proverb I learned in class was "When diet is wrong, medicine is of no use. When diet is correct, medicine is of no need." While, we are so blessed with the best team to follow Steve weekly for his TPN (IV nutrition) and it saved his life, and continues to do so; it only goes so far.
So, now that we have an almost healed sore on that booty instead of a scary not healing sore; we can begin to plan our action to get that stomach accepting some nutrition. That's first, second is herbal remedies that he can tolerate also. We did start this after our last hospital visit, but we immediately stopped when the sore came because of bathroom talk. When you are fed IV food, BMs happen once every other week or so, instead of the goal of daily with food by stomach. With a sore down there, and having just overcome sepsis, Steve put up the stop sign on the stomach; for good reasons.
If you've ever wanted to know how to pray specifically for Steve or what to visualize for him, here it is. Heal sore, stomach begin to tolerate foods, stomach also to tolerate some natural remedies, and infections to clear.
I know that Steve's exhausted, he's been literally battling (people often tell me not to use that word, but that is the TRUTH) for his life this entire year. As long as he does I'm right there beside him.
Onward & upward warriors.
As I'm slowly easing back into a routine, that I loose even with such a short hospital visit; I am slowly clearing the hospital/sleep deprived/anxious fog. I want to start this blog with some gratitude:
1. Steve didn't want to go to the hospital, but after a full night and morning of this anxiety/breathing stuff he decided it was time to go. He didn't have to change his mind, but I'm so thankful he did. We were able to get a lot done in the hospital, that helped ease my mind of a lot of unknown. It's a beautiful blessing to me and all who get to witness his journey the determination he shows, while showing up with love and kindness and a smile through it all.
2. On this same topic, the hospital staff all understand Steve's wishes to be home, and they hustled. If you follow facebook you saw all he had done, but here is a list for those who want to know. Trache change, discovering a collapsed right lobe in lung (chronic pneumonia & ALS), vent setting changes, bronchoscopy, picc line change, cultures on everything (literally), discovering new infections, removal of ingrown infected toenail, wound care, ultra sounds, new foley catheter, list of new orders to make life easier at home, & a blood transfusion. Also, they never give up on us, no matter how many complications we add to the list they are always willing to work through everything with us.
3. My in laws for all their help the past month or so. Lots has been happening that requires a load of extra help. When our list of people to call on becomes less and less, despite them being in their 70s are there at the drop of a hat to help me with Steve. Often days, when I have NO one else. Literally.
4. Our home health team (pharmacy, nursing, aid, & respiratory): ya'll always ride the waves with us. We couldn't do this journey with out you.
5. Wrap it up with a thank you to those who step up when we are sinking. Without hesitation or excuses you come to our aide. There's too many to list, but you know who you are.
As I continue to get Steve and I settled, and we incorporate some new things into our routine, my main focus will be researching ways to rid these infections. What once was a colonized lung infection has started spreading to multiple areas. Is it alarming? Of course. I won't sugar coat it. There were no words needed in the hospital as the cultures began growing more and more, everyone's faces read what they needed to say. No one wants to see Steve have more battle added to his list. It's just a lot, and it's hard.
So yes I am feeling that reality, but I will not give up hope. Just as Steve is still doing his best to live life on his terms, as he's shining that light from within; I will do my best to help ease some of the burden on his body. As a caregiver, I used to feel the need to defend myself with outsiders on why this was happening to Steve. I would constantly explain my actions, and feel like I had something to prove to everyone. If I'm honest I don't know why I'm writing this in past tense. Before leaving for the hospital I begged Steve to finally let me wash his hair, because I didn't want to deal with all the judgmental stares and comments. Of course, he was too sick to worry about his hair, and my ego needed to take a back seat. There were indeed a few comments, but mostly as I worked hard to change my perspective I was able to see that it's all me.
Truth is, much of why things happen to Steve is unknown, and much is the fact that because he has gastroparesus and doesn't get to eat real food; his body can only do so much. An Ayurvedic proverb I learned in class was "When diet is wrong, medicine is of no use. When diet is correct, medicine is of no need." While, we are so blessed with the best team to follow Steve weekly for his TPN (IV nutrition) and it saved his life, and continues to do so; it only goes so far.
So, now that we have an almost healed sore on that booty instead of a scary not healing sore; we can begin to plan our action to get that stomach accepting some nutrition. That's first, second is herbal remedies that he can tolerate also. We did start this after our last hospital visit, but we immediately stopped when the sore came because of bathroom talk. When you are fed IV food, BMs happen once every other week or so, instead of the goal of daily with food by stomach. With a sore down there, and having just overcome sepsis, Steve put up the stop sign on the stomach; for good reasons.
If you've ever wanted to know how to pray specifically for Steve or what to visualize for him, here it is. Heal sore, stomach begin to tolerate foods, stomach also to tolerate some natural remedies, and infections to clear.
I know that Steve's exhausted, he's been literally battling (people often tell me not to use that word, but that is the TRUTH) for his life this entire year. As long as he does I'm right there beside him.
Onward & upward warriors.
disconnected feelings and thoughts...
Some days when I sit to write a blog, I have clear words floating in my head I can't wait to let flow out of my finger tips, some days I write straight from my journal from thoughts that arouse the day before; and then some days like today, I write and hit back space at least 10 times before words start to formulate any coherent sentences.
Suddenly closing my eyes, I tried to make out what was going on most in my head today. The full moon is one, but not everyone (ahem mom) understands my fascination with the moon...All I can see are a bunch of different thoughts floating around. As I am sitting here typing, I have about 30 of them floating around playing bumper cars with one another. How am I supposed to get my thoughts coherent today?
So instead of thoughts, I closed my eyes to listen to my heart. What do I feel today? I feel the moon :), I feel the Mondays, I feel....breathe and really open up to listening.
Great, I don't even know what I'm feeling today? How am I so disconnected from myself? I'm in full preparation mode. It's Monday. Any minute now it's time for Steve's bath and wound care, then later this afternoon it's time for nurse to do her weekly visit. There's some planning that needs to be done as well today for future appointments.
That is literally ALL I CAN THINK ABOUT, and I think it's all I'm feeling; is the need to be prepared. Maybe its the idea of summer solstice, right? Maybe all I should be thinking about is preparing for all that needs it?
Either way this disconnect from myself feeling anything and unable to focus, is an important thing to recognize, and maybe that's all there is for me to do today. Recognize it, sit with it, and then work through it. I don't know. Maybe I'll give in to it, and just let this be the blog for the day.
Because this isn't the first time this has happened, but it's the first time I've sat with the feeling instead of burying my head into my phone as a distraction from the uncomfortable feeling of not knowing what I'm feeling...
This blog has been brought to you by real life.
Suddenly closing my eyes, I tried to make out what was going on most in my head today. The full moon is one, but not everyone (ahem mom) understands my fascination with the moon...All I can see are a bunch of different thoughts floating around. As I am sitting here typing, I have about 30 of them floating around playing bumper cars with one another. How am I supposed to get my thoughts coherent today?
So instead of thoughts, I closed my eyes to listen to my heart. What do I feel today? I feel the moon :), I feel the Mondays, I feel....breathe and really open up to listening.
Great, I don't even know what I'm feeling today? How am I so disconnected from myself? I'm in full preparation mode. It's Monday. Any minute now it's time for Steve's bath and wound care, then later this afternoon it's time for nurse to do her weekly visit. There's some planning that needs to be done as well today for future appointments.
That is literally ALL I CAN THINK ABOUT, and I think it's all I'm feeling; is the need to be prepared. Maybe its the idea of summer solstice, right? Maybe all I should be thinking about is preparing for all that needs it?
Either way this disconnect from myself feeling anything and unable to focus, is an important thing to recognize, and maybe that's all there is for me to do today. Recognize it, sit with it, and then work through it. I don't know. Maybe I'll give in to it, and just let this be the blog for the day.
Because this isn't the first time this has happened, but it's the first time I've sat with the feeling instead of burying my head into my phone as a distraction from the uncomfortable feeling of not knowing what I'm feeling...
This blog has been brought to you by real life.
Holding space for others.
Now that I have a better understanding of holding space for myself, I'm starting to be able to see, more clearly, how to hold space better for others. For a while I felt like I was doing an excellent job at doing this with Steve; but recently I've been able to see that I can only hold space for someone if I can truly sit with them, and not put my feelings on to them.
The blog I wrote when Steve first got out of the hospital this last visit, was my most viewed blog I've written; because I think it was the start of me truly accepting some hard truths. I'm starting to truly absorb and sit with them. Even yesterday while, chatting with Steve and his parents about some ongoing symptoms happening with Steve, and the question on which steps to take. Of course, when the hospital is mentioned, Steve says, "No hospital please."
My first reaction on a typical basis is to then spend some time trying to convince him to change his mind. Yesterday however it was sort of different.
He calls the shots now, so we sat for a while yesterday and talked it out. Okay, if the hospital isn't an option, let's find another one. One that Steve's agreeable with. Steve's not giving up and doesn't plan to anytime soon, so I am counting my blessings on that; but he doesn't want to do so much intervention anymore.
He said, "If it's my time, I'm ready; and until then I'll live the best I can."
His message was heard for maybe the first time by me. I used to get so confused on how to accept that he is still going to put his energy in living the fullest life he can; while no more hospital interventions. Yesterday I heard him say, "allow me to live this life how I can best be happy and positive," without saying it. He's happy at home, he's comfortable, in control, surrounded by art and nature, he has his peace when he wants it, and he doesn't want anyone else to take care of him, but me. So that's what he will get. :)
So we now have a much less traumatic and invasive plan to help solve some complications (mainly based around a picc line malfunction) and I feel peace. He's still here. He's still willing to do the work, it's just on his terms. I can now hold space for him as he is living the best way he knows how with ALS; and it's beautiful. <3
The blog I wrote when Steve first got out of the hospital this last visit, was my most viewed blog I've written; because I think it was the start of me truly accepting some hard truths. I'm starting to truly absorb and sit with them. Even yesterday while, chatting with Steve and his parents about some ongoing symptoms happening with Steve, and the question on which steps to take. Of course, when the hospital is mentioned, Steve says, "No hospital please."
My first reaction on a typical basis is to then spend some time trying to convince him to change his mind. Yesterday however it was sort of different.
He calls the shots now, so we sat for a while yesterday and talked it out. Okay, if the hospital isn't an option, let's find another one. One that Steve's agreeable with. Steve's not giving up and doesn't plan to anytime soon, so I am counting my blessings on that; but he doesn't want to do so much intervention anymore.
He said, "If it's my time, I'm ready; and until then I'll live the best I can."
His message was heard for maybe the first time by me. I used to get so confused on how to accept that he is still going to put his energy in living the fullest life he can; while no more hospital interventions. Yesterday I heard him say, "allow me to live this life how I can best be happy and positive," without saying it. He's happy at home, he's comfortable, in control, surrounded by art and nature, he has his peace when he wants it, and he doesn't want anyone else to take care of him, but me. So that's what he will get. :)
So we now have a much less traumatic and invasive plan to help solve some complications (mainly based around a picc line malfunction) and I feel peace. He's still here. He's still willing to do the work, it's just on his terms. I can now hold space for him as he is living the best way he knows how with ALS; and it's beautiful. <3
Give yourself space...
So something is coming to a head these past few days, that has given me some serious clarity. For more time than I can remember, truthfully, I would get deeply offended by people offering me unsolicited advice. It was an interesting automatic response that I would then fight myself over. How could I get mad at someone for offering me knowledge?
Especially some of the people, being so knowledgeable, how is it okay for me to be put off by them? I would often try to hide my inner annoyance but I'm not very good at the whole fake it til you make it thing. I'm pretty transparent for the most part, so a lot of people offering me good wisdom, were then put off by my resistance to hear them.
I didn't truly understand it or actually try to for a long time. Suddenly yesterday it was like the clouds parted and the sun came out, I finally had an understanding as to why it's bothered me for so long. For a long time I have perceived myself as incapable of a lot of things; but mostly I saw myself as a lost girl who will never be able to comprehend it all.
Because I was perceiving myself this way, I felt like everyone else was too. Were these people actually seeing me this way? I'll probably never really know that, and that's not even important. It's how I perceive it, and why do I?
In the past 5 years I've barely given myself the space to absorb it all. All the stretching, growing, learning, etc. I wonder how many of us do this to ourselves? Get so caught in life without actually giving ourselves the space to understand it.
What do I mean by space?
Taking time, where you shut out the noise around you, and listen to yourself. Turn off the TV, disconnect from the internet, don't talk to others about what's going on, etc. Yesterday I wrote for hours, pouring the words out on to the pages, and as they came flowing out so did so many answers.
There's lots to process, but to start with I'm going to work on how I perceive myself. Because the truth is that's what rules the rest of it. If I see myself as incapable, how am I ever going to be capable?
Guess what?! I AM capable. I AM intelligent. I AM in charge of my truth. MY truth.
Anyone needing space to process anything?
If so, take it. Don't wait. I obviously am doing it on my terms, so can you. I'm still here for Steve, and he's in my space; and that's okay. You can make your situation work for you, as long as you want it to.
Especially some of the people, being so knowledgeable, how is it okay for me to be put off by them? I would often try to hide my inner annoyance but I'm not very good at the whole fake it til you make it thing. I'm pretty transparent for the most part, so a lot of people offering me good wisdom, were then put off by my resistance to hear them.
I didn't truly understand it or actually try to for a long time. Suddenly yesterday it was like the clouds parted and the sun came out, I finally had an understanding as to why it's bothered me for so long. For a long time I have perceived myself as incapable of a lot of things; but mostly I saw myself as a lost girl who will never be able to comprehend it all.
Because I was perceiving myself this way, I felt like everyone else was too. Were these people actually seeing me this way? I'll probably never really know that, and that's not even important. It's how I perceive it, and why do I?
In the past 5 years I've barely given myself the space to absorb it all. All the stretching, growing, learning, etc. I wonder how many of us do this to ourselves? Get so caught in life without actually giving ourselves the space to understand it.
What do I mean by space?
Taking time, where you shut out the noise around you, and listen to yourself. Turn off the TV, disconnect from the internet, don't talk to others about what's going on, etc. Yesterday I wrote for hours, pouring the words out on to the pages, and as they came flowing out so did so many answers.
There's lots to process, but to start with I'm going to work on how I perceive myself. Because the truth is that's what rules the rest of it. If I see myself as incapable, how am I ever going to be capable?
Guess what?! I AM capable. I AM intelligent. I AM in charge of my truth. MY truth.
Anyone needing space to process anything?
If so, take it. Don't wait. I obviously am doing it on my terms, so can you. I'm still here for Steve, and he's in my space; and that's okay. You can make your situation work for you, as long as you want it to.