perspective
I used to dread Monday and Thursday mornings. It seemed no matter how hard I would try, I would find myself unable to sleep well the night before, and during Steve's bath I would be in the moment trying to absorb some of the pain from Steve, that by the end of the 40 minutes I would feel so sick that I would need to lie down.
This happened for months, I would try to meditate the night and morning before to be in the right space, I would actively seek the positive to try to change my attitude on it; I tried all my tricks on turning my negative reaction around, but nothing seemed to help ease the dreaded bath times. Things of course got worse before they got better...
"Did you see this sore back here?" Monica asked during Steve's bath one slow moving day in April.
"No?" I'm immediately concerned she never has me look at his booty, "Here can you come hold him so I can look."
My heart sinks. That's easily a stage 4, I think to myself. She can tell by the look on my face, that I'm concerned. As the reality sinks in, and several people are added to the list of people looking at my husbands butt, while I'm standing beside them, grows. Actively making a plan of wound care 5 days a week.
"I won't live through this," Steve says seriously concerned.
'He might be right,' I'm thinking trying to come up with the right words. "Yeah babe it is going to take all you have, but if you want to you can do this. Remember what all you've overcome thus far. You can do this." Really believing the words as they were coming out. "Plus who knows maybe all this moving will loosen up some junk in those lungs, and get your body used to moving." We both smile.
Perspective change.
Each wound care/turn after this began a little easier, and a little less dreadful. The wound was real, the pain was real, the time and energy we would be spending on wound care was real, all very real very heavy. However, we started making it through, without falling apart because instead of seeing this as, "It's so awful I have to move him so much," "It's not fair he has to go through this," or "man my back hurts from doing two days of this in a row." It was now, "Wow look how much your lungs are allowing you to clear," "Your hips just bent in a way they haven't done in 3 years," & "That went really well actually..."
Changing our perspective of the reality that really we weren't going to change. Wounds take so long to heal, it's not like we could just trade this reality for a new one. We could have continued to dread wound care and baths that we were doing 5 days a week and now do only 3, but that's not the life either of us had in mind for ourselves.
Writing this after a 45 minute bath and wound care session, I feel grateful. Grateful for another chance to help send healing love into Steve's wound while I cleaned it, put my love infused magical cream, and bandaged him up; all while laughing and chatting with my nurse aide, because Steve was laying on his side, with manageable amounts of pain, instead of inconsolable like he once was with moving.
Suddenly wound care is another thing we do with intentions of healing, and it's not dreadful. It's not a picnic of course, but it's manageable. It doesn't make me sick and it certainly doesn't ruin Steve's day anymore. In fact on off days, Steve wants rearranged. Not in over a year would Steve allow you to move him if he didn't absolutely need it.
With that perspective change, this wound became our new norm without destroying us. In fact, it only made us stronger, and much much more patient people.
If you're struggling with something in life, try a shift in perspective. Trust me, it can change any situation. Any.
This happened for months, I would try to meditate the night and morning before to be in the right space, I would actively seek the positive to try to change my attitude on it; I tried all my tricks on turning my negative reaction around, but nothing seemed to help ease the dreaded bath times. Things of course got worse before they got better...
"Did you see this sore back here?" Monica asked during Steve's bath one slow moving day in April.
"No?" I'm immediately concerned she never has me look at his booty, "Here can you come hold him so I can look."
My heart sinks. That's easily a stage 4, I think to myself. She can tell by the look on my face, that I'm concerned. As the reality sinks in, and several people are added to the list of people looking at my husbands butt, while I'm standing beside them, grows. Actively making a plan of wound care 5 days a week.
"I won't live through this," Steve says seriously concerned.
'He might be right,' I'm thinking trying to come up with the right words. "Yeah babe it is going to take all you have, but if you want to you can do this. Remember what all you've overcome thus far. You can do this." Really believing the words as they were coming out. "Plus who knows maybe all this moving will loosen up some junk in those lungs, and get your body used to moving." We both smile.
Perspective change.
Each wound care/turn after this began a little easier, and a little less dreadful. The wound was real, the pain was real, the time and energy we would be spending on wound care was real, all very real very heavy. However, we started making it through, without falling apart because instead of seeing this as, "It's so awful I have to move him so much," "It's not fair he has to go through this," or "man my back hurts from doing two days of this in a row." It was now, "Wow look how much your lungs are allowing you to clear," "Your hips just bent in a way they haven't done in 3 years," & "That went really well actually..."
Changing our perspective of the reality that really we weren't going to change. Wounds take so long to heal, it's not like we could just trade this reality for a new one. We could have continued to dread wound care and baths that we were doing 5 days a week and now do only 3, but that's not the life either of us had in mind for ourselves.
Writing this after a 45 minute bath and wound care session, I feel grateful. Grateful for another chance to help send healing love into Steve's wound while I cleaned it, put my love infused magical cream, and bandaged him up; all while laughing and chatting with my nurse aide, because Steve was laying on his side, with manageable amounts of pain, instead of inconsolable like he once was with moving.
Suddenly wound care is another thing we do with intentions of healing, and it's not dreadful. It's not a picnic of course, but it's manageable. It doesn't make me sick and it certainly doesn't ruin Steve's day anymore. In fact on off days, Steve wants rearranged. Not in over a year would Steve allow you to move him if he didn't absolutely need it.
With that perspective change, this wound became our new norm without destroying us. In fact, it only made us stronger, and much much more patient people.
If you're struggling with something in life, try a shift in perspective. Trust me, it can change any situation. Any.
In the shadow
And when you're basking in that light
and all your good features shine
All the darkness is out of sight
Because that light is so divine
The real is hidden in the shadows
That people don't look close enough to see
The real you that no one but you knows
The real you, who you feel you can't just be
Then someone comes along
and looks at you just right
Seeing all the weak and strong
and all the dark and bright
They tell you they love you, enough that it shows
They open your heart to the way they see
that even in the shadows
Lies a beautiful me.
*******
Today I wanted to share a poem I wrote about Steve finding beauty in my shadows. It's a new thing for me to share poems, even though I write a few a week. As a kid I wrote them all the time, and would beam with joy when my mom would get them published. Somewhere along the way I allowed people to convince me that I wasn't good enough to write poems.
I'm sharing this because it makes me vulnerable, and in order to keep growing and expanding, I need to keep sharing. Stay open, stay raw, stay me.
Also, sharing this because I took a photo in my garden that immediately reminded me of this poem, so i'll leave you with this, and the photo.
Like a lion I roar....only after I release.
This blog was 5 different very poorly written blogs, before it became this one today. I would write a few crap sentences and look down at the clock ticking away in the bottom right corner of the screen. I couldn't believe it, I was sitting here for a full hour, writing garbage sentence after garbage sentence.
After walking a few laps around my yard, trying to take in new scenery hoping to change the energy I was feeling; as I sit down to type something, that I was sure would be more advanced than a kindergarten sentence, I hear "I'm up" through the monitor.
As I walk in the room making eye contact with Steve, I immediately start releasing all the pent up feelings in tears. The frustration, lack of inspiration, the pent up energy, the disappointment, the claustrophobia, the.....all of it. Most of it pouring out in incoherent words and run on sentences. As I was done, my tear stained eyes looked at Steve's who's were darting across his tobii writing me words to help me feel better.
After 20 minutes of good exchanges and our morning routine, I walked back outside to sit and blog. I look at the screen and read the words I had managed to type earlier. I had typed all about the new moon in Leo and letting your inner fiery roar out, and I start laughing. Much like you see women acting out a full emotional break down on TV. I mean I'm in tears I'm laughing so hard. Once I catch my breath, I'm able to see it all clearly.
Steve without knowing it was my hero today (he usually is, so this part isn't surprising), with his sweet eyes and presence this morning, I was able to find release. The release I needed of all the uninspired, frustration I was carrying around. The release of all the yucky, so that I could go about the rest of my day feeling fresh, hopeful, and even at ease.
So many times, I'm trying to shift my feelings by simply changing my mood to better. I seek inspiration in the birds, changes of scenery, in words, art, etc; when really I need to release the other emotions before there's space for the new. Here I was trying to add emotions on top of emotions and instead of anything funneling out, the excess was boiling over.
Release. How often I forget to release. Acknowledging and feeling the emotions weren't enough, I needed to release them. So today as I feel the lightness of the recent release, I was fortunate enough to experience this morning, I want to leave you with a song; by our very talented and dear friend Gareth Asher all about that release.
What do you need to release? Let it all go, and if it helps, embrace the Leo energies and release it in a nice big roar. Then maybe have a chuckle at yourself, because releasing the tense energies, allows room for the play again.
After walking a few laps around my yard, trying to take in new scenery hoping to change the energy I was feeling; as I sit down to type something, that I was sure would be more advanced than a kindergarten sentence, I hear "I'm up" through the monitor.
As I walk in the room making eye contact with Steve, I immediately start releasing all the pent up feelings in tears. The frustration, lack of inspiration, the pent up energy, the disappointment, the claustrophobia, the.....all of it. Most of it pouring out in incoherent words and run on sentences. As I was done, my tear stained eyes looked at Steve's who's were darting across his tobii writing me words to help me feel better.
After 20 minutes of good exchanges and our morning routine, I walked back outside to sit and blog. I look at the screen and read the words I had managed to type earlier. I had typed all about the new moon in Leo and letting your inner fiery roar out, and I start laughing. Much like you see women acting out a full emotional break down on TV. I mean I'm in tears I'm laughing so hard. Once I catch my breath, I'm able to see it all clearly.
Steve without knowing it was my hero today (he usually is, so this part isn't surprising), with his sweet eyes and presence this morning, I was able to find release. The release I needed of all the uninspired, frustration I was carrying around. The release of all the yucky, so that I could go about the rest of my day feeling fresh, hopeful, and even at ease.
So many times, I'm trying to shift my feelings by simply changing my mood to better. I seek inspiration in the birds, changes of scenery, in words, art, etc; when really I need to release the other emotions before there's space for the new. Here I was trying to add emotions on top of emotions and instead of anything funneling out, the excess was boiling over.
Release. How often I forget to release. Acknowledging and feeling the emotions weren't enough, I needed to release them. So today as I feel the lightness of the recent release, I was fortunate enough to experience this morning, I want to leave you with a song; by our very talented and dear friend Gareth Asher all about that release.
What do you need to release? Let it all go, and if it helps, embrace the Leo energies and release it in a nice big roar. Then maybe have a chuckle at yourself, because releasing the tense energies, allows room for the play again.
August = ALS month
This day always reminds me of this day 5 years ago. I wake up with anxiety just knowing it's August 1st. You see this day 5 years ago, the first of a few doctors told Steve he had ALS. No one of course believed this doctor as the appointment went like this.
"What's going on with you?" The doctor asks Steve.
Steve, "I have some weakness that started in my right hand, and has gone to my left, and now I've started falling. I've been going to the doctor for any one of these symptoms for over a year, and there's never been any answers."
"Sounds like you have ALS, you should schedule an appointment with a specialist." The doctor replied with no emotion.
"What is ALS?" Remember 5 years ago when no one knew what it was.
"Lou Gehrig's disease, here's some doctor recommendations." That was it.
This was the 3rd doctor Steve had seen in just the short 4 months we had been dating, and despite this doctors poor diagnosing skills, I had that sinking feeling in my stomach he could be right. This was the first time Steve asked me what I would do if he had ALS. I remember that night he cooked dinner, and through tears told me that he spent the day researching and it would be awful, that he couldn't ask me to stay. I told him, not to get ahead of himself. I told him to stop researching, stop expecting us to have all the answers, and just wait and see, and that I didn't have any plans on leaving.
Of course, Steve my planning obsessed boopy, didn't stop planning. In fact he went ring shopping with his mom the very next day. August has always been "my month" I'm a leo, so it's not just one day in this month that's my birthday, it's my birthday month. Later becoming the month we got engaged and immediately started planning a wedding for just 2 months away. It's almost no surprise to me that in 2014 it became, ALS month; due to the ice bucket challenge.
ALS being the theme of this month is almost comforting these days. To know people actually know what ALS is, and to see people care enough about ALS patients they decided to participate in a challenge that went viral. It was all people talked about the entire month of August 2014, it was surreal, I mean we had people in the community become famous essentially because of an ALS diagnosis.
The ice bucket challenge was an amazing blessing to our community, that we've all been trying to hold onto for dear life. Of course, the results of the challenge are varying, but the fact that this disease was in the headlines, was hope. I had a glimmer of, "Steve could get cured."
Do I have that hope today? No. I'll be honest, I don't, with all that I've witnessed Steve's body go through, and the political BS in getting clinical trials funded and convincing the FDA for a right to try something proving to add some life, the reality is too clear.
HOWEVER, I think if we could find a way to replicate the money coming in that we did in 2014, to the right source (those wondering that would be ALS TDI) it could happen sooner rather than later. I believe August 2014 was the best thing that ever happened in the ALS community, and I hope every August generates that kind of money.
Neither Steve & I will be dumping any water on our heads this August, and we plead with all of our followers not to either. To be honest, water is too scarce for too many people, for us to feel okay with it being used for that. HOWEVER, we have some things up our sleeves for this month and we will be reminding you all of how important donations are.
Bernie Sanders taught a pretty incredible lesson this election season. You don't need the big money donations, you need donations in numbers. Between all of our different social media outlets Steve & I have, we have over 30,000 people following us. Some of those numbers could be duplicates, but stay with me. If each of those 30,000 just donated $15 we could raise $450,000! That is how we fund a cure. Change that to $20 & we are talking $600,000. That's some serious money from one ALS patients following. Now take that and multiply it by the thousands of ALS patients world wide, and together we can again make a huge difference in this community.
So with our reality being ALS everyday, having others talking about it this month, will be nice. Maybe a nice break from all the sources trying to divide us against each other, and we will see everyone come together. Because like I keep saying, we are in this together.
"What's going on with you?" The doctor asks Steve.
Steve, "I have some weakness that started in my right hand, and has gone to my left, and now I've started falling. I've been going to the doctor for any one of these symptoms for over a year, and there's never been any answers."
"Sounds like you have ALS, you should schedule an appointment with a specialist." The doctor replied with no emotion.
"What is ALS?" Remember 5 years ago when no one knew what it was.
"Lou Gehrig's disease, here's some doctor recommendations." That was it.
This was the 3rd doctor Steve had seen in just the short 4 months we had been dating, and despite this doctors poor diagnosing skills, I had that sinking feeling in my stomach he could be right. This was the first time Steve asked me what I would do if he had ALS. I remember that night he cooked dinner, and through tears told me that he spent the day researching and it would be awful, that he couldn't ask me to stay. I told him, not to get ahead of himself. I told him to stop researching, stop expecting us to have all the answers, and just wait and see, and that I didn't have any plans on leaving.
Of course, Steve my planning obsessed boopy, didn't stop planning. In fact he went ring shopping with his mom the very next day. August has always been "my month" I'm a leo, so it's not just one day in this month that's my birthday, it's my birthday month. Later becoming the month we got engaged and immediately started planning a wedding for just 2 months away. It's almost no surprise to me that in 2014 it became, ALS month; due to the ice bucket challenge.
ALS being the theme of this month is almost comforting these days. To know people actually know what ALS is, and to see people care enough about ALS patients they decided to participate in a challenge that went viral. It was all people talked about the entire month of August 2014, it was surreal, I mean we had people in the community become famous essentially because of an ALS diagnosis.
The ice bucket challenge was an amazing blessing to our community, that we've all been trying to hold onto for dear life. Of course, the results of the challenge are varying, but the fact that this disease was in the headlines, was hope. I had a glimmer of, "Steve could get cured."
Do I have that hope today? No. I'll be honest, I don't, with all that I've witnessed Steve's body go through, and the political BS in getting clinical trials funded and convincing the FDA for a right to try something proving to add some life, the reality is too clear.
HOWEVER, I think if we could find a way to replicate the money coming in that we did in 2014, to the right source (those wondering that would be ALS TDI) it could happen sooner rather than later. I believe August 2014 was the best thing that ever happened in the ALS community, and I hope every August generates that kind of money.
Neither Steve & I will be dumping any water on our heads this August, and we plead with all of our followers not to either. To be honest, water is too scarce for too many people, for us to feel okay with it being used for that. HOWEVER, we have some things up our sleeves for this month and we will be reminding you all of how important donations are.
Bernie Sanders taught a pretty incredible lesson this election season. You don't need the big money donations, you need donations in numbers. Between all of our different social media outlets Steve & I have, we have over 30,000 people following us. Some of those numbers could be duplicates, but stay with me. If each of those 30,000 just donated $15 we could raise $450,000! That is how we fund a cure. Change that to $20 & we are talking $600,000. That's some serious money from one ALS patients following. Now take that and multiply it by the thousands of ALS patients world wide, and together we can again make a huge difference in this community.
So with our reality being ALS everyday, having others talking about it this month, will be nice. Maybe a nice break from all the sources trying to divide us against each other, and we will see everyone come together. Because like I keep saying, we are in this together.
My mind is an untalented punk rock band...
They say the brain screams, while the heart whispers; often leaving the brain in charge of making decisions. However, the moments when you can tune into your heart, and really allow it to do the leading, are the most connected and pure moments you'll experience. The more you can learn to tap into that space, the louder it will become, and the quieter your mind will be.
A day in the life with my mind:
Alarm. okay, I have to get up and get stuff done. Marlowe snuggles me just as I grab my phone and turn the alarm off. Okay I can cuddle with her for a little bit. One minute in I grab my phone and begin to check the social media world for the day. 15 minutes later, crap, what am I even looking at?I notice I've been on my phone that long, I jump up. I begin my morning routine. What time did I schedule wound care today? What all can I get done before Steve gets up, oh and I can't forget put the clothes in the dryer. I forgot last night, I hope they aren't mildewed already. I walk out grabbing the yoga mat and cushion, as I roll out the mat, I remember, Oh crap the laundry. After a quick laundry break I see a bird I want to take a video of...Oh let me feed them...oh let me get a picture of that bug...oh look at the chipmunk....20 minutes later, I'm back on the yoga mat. In downward facing dog, I notice Marlowe scratching her butt on the post, "come here Marlowe." Poor thing needs scratched. Crap back to yoga. A very unfocused 20 minutes later I sit on the cushion. Okay breathe into my heart space and exhale up and out. Suddenly Marlowe starts scratching I wonder if she has fleas? I just put flea medicine on her. It's probably the heat....It is hot. I can't believe it's record heat temps and people still doubt climate change. Wonder if I should blog on that this morning. Chime rings, and suddenly I'm back on my breath. How did i just let my mind go that far. Okay breathe in focus, breathe out, breathe in focus, a bird starts to chirp near me, and I allow it to keep the monkey brain at bay for the remainder of the practice. As I'm brewing my coffee I try to tidy up the kitchen, starting the dishes, oh let me check the laundry, change laundry, back to dishes, oh I forgot to open that box I got in the mail yesterday, open box, discover medical supplies, unpack them, back to kitchen, oh yeah the dishes. Oh well coffee's ready I'll get back to those. Sitting down starring at the black screen, suddenly I have no words. I open my journal, hoping I had a good thought yesterday that will spark a blog, oh let me check my daily reading book, oh.... Steve's alarm rings. Damnit. "What are you doing awake already?"
A day in the life of my heart:
Alarm. Get out of bed and turn off alarm, see Marlowe curled up in the bed, putting the phone back on the table, curling with Marlowe. This dog just fuels me, feel her sending me love. She seriously was the best gift anyone's ever given me. Thanks Steve. Pause and get up and look at Steve. Studying his peaceful face and smiling at the little drops of droll in the corners of his mouth. I love seeing him comfortable. Get up and do my morning routine. Okay my face is not what determines my beauty, hey skin you'll clear up soon, I'm giving you all kinds of nourishment. Spitting out the coconut oil in garbage from oil pulling, I then clean up the bathroom after a few days of not tidying up after routines. Grabbing a pile of laundry and the 3 glasses of half drank water by the bed I make my way to the kitchen. Just dropping things off, and grabbing the yoga mat I make my way outside. It feels so good out here, and listen to those birds. Throwing out my mat to unroll starts the breath pattern immediately. It flows and with each exhale I begin to loosen up the tight morning muscles. Separate my toes and hold it for 5 full breaths. Feeling invigorated I sit on the cushion sinking into it, like I just sat on a raft in the water. The rhythm of the breath opens the heart more, silencing the mind. The bell rings, wow that was a fast 15 minutes, Namaste. Brewing coffee, I start the laundry, and then do the dishes. I should blog on Steve's wound today. Sitting down in front of the computer letting the words flow. Finishing up, and jotting some thoughts for tomorrow in my journal, and Steve's alarm rings. "Good morning boopy! How are you this morning? You look handsome."
Two very different days that are very true to real life, that highly depend on where I'm living my day from. The reason I wake up so early is to work to get to a place of the heart before Steve wakes up. Thankfully most days I get there, but I still show up everyday, because there's those days where the mind is having a full blown terrible punk rock concert, overshadowing everything in it's path, and it takes practice to stop it.
A day in the life with my mind:
Alarm. okay, I have to get up and get stuff done. Marlowe snuggles me just as I grab my phone and turn the alarm off. Okay I can cuddle with her for a little bit. One minute in I grab my phone and begin to check the social media world for the day. 15 minutes later, crap, what am I even looking at?I notice I've been on my phone that long, I jump up. I begin my morning routine. What time did I schedule wound care today? What all can I get done before Steve gets up, oh and I can't forget put the clothes in the dryer. I forgot last night, I hope they aren't mildewed already. I walk out grabbing the yoga mat and cushion, as I roll out the mat, I remember, Oh crap the laundry. After a quick laundry break I see a bird I want to take a video of...Oh let me feed them...oh let me get a picture of that bug...oh look at the chipmunk....20 minutes later, I'm back on the yoga mat. In downward facing dog, I notice Marlowe scratching her butt on the post, "come here Marlowe." Poor thing needs scratched. Crap back to yoga. A very unfocused 20 minutes later I sit on the cushion. Okay breathe into my heart space and exhale up and out. Suddenly Marlowe starts scratching I wonder if she has fleas? I just put flea medicine on her. It's probably the heat....It is hot. I can't believe it's record heat temps and people still doubt climate change. Wonder if I should blog on that this morning. Chime rings, and suddenly I'm back on my breath. How did i just let my mind go that far. Okay breathe in focus, breathe out, breathe in focus, a bird starts to chirp near me, and I allow it to keep the monkey brain at bay for the remainder of the practice. As I'm brewing my coffee I try to tidy up the kitchen, starting the dishes, oh let me check the laundry, change laundry, back to dishes, oh I forgot to open that box I got in the mail yesterday, open box, discover medical supplies, unpack them, back to kitchen, oh yeah the dishes. Oh well coffee's ready I'll get back to those. Sitting down starring at the black screen, suddenly I have no words. I open my journal, hoping I had a good thought yesterday that will spark a blog, oh let me check my daily reading book, oh.... Steve's alarm rings. Damnit. "What are you doing awake already?"
A day in the life of my heart:
Alarm. Get out of bed and turn off alarm, see Marlowe curled up in the bed, putting the phone back on the table, curling with Marlowe. This dog just fuels me, feel her sending me love. She seriously was the best gift anyone's ever given me. Thanks Steve. Pause and get up and look at Steve. Studying his peaceful face and smiling at the little drops of droll in the corners of his mouth. I love seeing him comfortable. Get up and do my morning routine. Okay my face is not what determines my beauty, hey skin you'll clear up soon, I'm giving you all kinds of nourishment. Spitting out the coconut oil in garbage from oil pulling, I then clean up the bathroom after a few days of not tidying up after routines. Grabbing a pile of laundry and the 3 glasses of half drank water by the bed I make my way to the kitchen. Just dropping things off, and grabbing the yoga mat I make my way outside. It feels so good out here, and listen to those birds. Throwing out my mat to unroll starts the breath pattern immediately. It flows and with each exhale I begin to loosen up the tight morning muscles. Separate my toes and hold it for 5 full breaths. Feeling invigorated I sit on the cushion sinking into it, like I just sat on a raft in the water. The rhythm of the breath opens the heart more, silencing the mind. The bell rings, wow that was a fast 15 minutes, Namaste. Brewing coffee, I start the laundry, and then do the dishes. I should blog on Steve's wound today. Sitting down in front of the computer letting the words flow. Finishing up, and jotting some thoughts for tomorrow in my journal, and Steve's alarm rings. "Good morning boopy! How are you this morning? You look handsome."
Two very different days that are very true to real life, that highly depend on where I'm living my day from. The reason I wake up so early is to work to get to a place of the heart before Steve wakes up. Thankfully most days I get there, but I still show up everyday, because there's those days where the mind is having a full blown terrible punk rock concert, overshadowing everything in it's path, and it takes practice to stop it.
Follow up on lost visits...
Because I have a lot of caregivers following this blog, I wanted to follow up on the blog, where I mentioned the visits decreasing. A lot of your resonated with it, some people just flat out didn't like it, and others really absorbed it.
Over the past month, there's been a great reconnect with some of our tribe, and it's been a beautiful thing to have people reaching out again, and let me tell you the help between family and friends visiting has been amazing! I'm finally catching up with things that sort of fell apart this year. This year had some very harsh hospital visits, that have kicked me off my feet. So, to everyone who has helped me stand back on my own again, thank you!
This is why I'm writing this blog, the other day a friend said something to me, that I want to share with everyone. "Hope, a lot of us thought you two needed to be alone to get through this, or that Steve needed to be resting and not have visits; you putting yourself out there gave us the okay to reach out to you. It was what was needed, people needed to know you want us here."
Of course after this, I had to process some things, and it dawned on me; that after 5 years of this I'm still not very good at saying, "Help! Hello, I'm drowning here help me." I sort of just expected everyone to know it. Speaking my truth to others really lets them know what they can do for us.
So if you're a caregiver that is in need of something, chances are others aren't going to think of it on their own. It's not a bad thing, it's just no one understands exactly what it takes to be an ALS caregiver, unless you've been through it yourself. So allow me to encourage you, ask for help when you need it, tell your people you need visitors, etc.
For those who have asked about Steve's status with visitors. He loves them in small doses. What I mean by that is, he loves having people around but he will get tired, and he has no shame in kicking us all out of the room when he does. Don't feel like you're going to make him sick or wear him out, because when he's had too much, he will tell you. No two days are the same either, so of course there may be that really bad day where he wants to be alone, but having people to talk to other than just me, goes a long way in quality of life for Steve. I would imagine this would apply to any bed bound patient.
So there you have it, I'm always learning and growing; and one day I will be an expert in the art of asking for help. Truth is, I can't expect people to know I need something, if I don't ask.
Over the past month, there's been a great reconnect with some of our tribe, and it's been a beautiful thing to have people reaching out again, and let me tell you the help between family and friends visiting has been amazing! I'm finally catching up with things that sort of fell apart this year. This year had some very harsh hospital visits, that have kicked me off my feet. So, to everyone who has helped me stand back on my own again, thank you!
This is why I'm writing this blog, the other day a friend said something to me, that I want to share with everyone. "Hope, a lot of us thought you two needed to be alone to get through this, or that Steve needed to be resting and not have visits; you putting yourself out there gave us the okay to reach out to you. It was what was needed, people needed to know you want us here."
Of course after this, I had to process some things, and it dawned on me; that after 5 years of this I'm still not very good at saying, "Help! Hello, I'm drowning here help me." I sort of just expected everyone to know it. Speaking my truth to others really lets them know what they can do for us.
So if you're a caregiver that is in need of something, chances are others aren't going to think of it on their own. It's not a bad thing, it's just no one understands exactly what it takes to be an ALS caregiver, unless you've been through it yourself. So allow me to encourage you, ask for help when you need it, tell your people you need visitors, etc.
For those who have asked about Steve's status with visitors. He loves them in small doses. What I mean by that is, he loves having people around but he will get tired, and he has no shame in kicking us all out of the room when he does. Don't feel like you're going to make him sick or wear him out, because when he's had too much, he will tell you. No two days are the same either, so of course there may be that really bad day where he wants to be alone, but having people to talk to other than just me, goes a long way in quality of life for Steve. I would imagine this would apply to any bed bound patient.
So there you have it, I'm always learning and growing; and one day I will be an expert in the art of asking for help. Truth is, I can't expect people to know I need something, if I don't ask.