Today Rain came over. I love my visits with Rain. I'm soooooo cleeaaaaaannnnnnn. AND clean sheets!! my bed feels like heaven right now.
My gratitude for her entering my life is immense and nothing less than timely (her and i met in person a few weeks before my good friend passed last fall).
If you wonder how someone stays bathed when they cannot get up to be in a shower/bath and do not have access to much in the way of caregivers....well, i shall let you know. I am sure a few of you already know about this world.
In 2017, i could still access a shower with my port etc. and sit in the bath and let the water fall on me but that was crashing me more and more. So, in 2018 when i entered a wheelchair just to make it to pee (severe decline), i went months without showering, cleaning etc. because, well i couldn't, literally. I maybe could have had moments where i could have in bed but i wasn't yet familiar with that world. I never knew what a hair washing tub was or dry shampoo and many other ways you get creative in bed land.
So, I bought a shower chair but that wasn't going well, i couldn't even hold my hands up and it was getting to the point where everything was so discombobulated 24/7 and off balance, that i truly was in not only constant crashes (and declining permanently after each crash) from attempting these showers but quite unsafe conditions. I clearly remember my last shower ever was February 14, 2019. That was a bad day. That was the day i realized my reality and gave grace for how hard i tried and fought to keep taking care of myself.
A friend from Phoenix Rising gave me some ideas on how to go about this land and i am very grateful for his help. I was truly clueless. I was waiting for Drs to intervene and have plans....but that never really happened. This board helped me immensely when i was in a very shell shocked and dark place.
Sometime in 2019, i went on amazon and saw they had these inflatable hair wash stations. I was very very weak though and generally would crash hard when i would find a friend willing to help me do this. Which, is not as often as you would think. Then, I bought a old school enameled porcelin washbasin. So, my son would help me fill it up with warm soapy water. It was incredibly hard. He would close the door and i would stare at the washbasin, and become so motivated. Try to sit up to place a towel under me. I love water so much. I miss the way it cleanses my energy daily, alone. But, i really struggled. Some weeks i could only do my face, some weeks only half my body then full out shaking, brain shut down, numbness, low O2, low HR crashing. Some weeks...the water just sat there and i could do nothing but stare at it. Hard as i may try to move.
As i've stated, i began an upswing back from land o death in 2020, fall. After beginning transdermal vitamins. So slowly, i've been able to to do this more without the severe crashes every single time. But, it was still often a trade off. Like do i want a meal this evening or a spongebath etc? On top of it i have had a few friends that stopped in to help from time to time but understandably, when they realized 4 years later i wasn't really changing....most of them have gone with the wind. I get it. No fun watching someone you love suffer. I'm so grateful for each of their presences in my life when they could. Our journeys crossed for learning on both sides. I could sometimes get my husband to do my hair but it was tough, never fun and generally to be last resort. So, i would go for as long as i could, then wait till he was having a good night say after his soccer game and its a game, i have to approach things in that way. Like so much of my life. Not predictable and many times leaving me with make do situations.
Well, enter this angel, Rain. She read my story in the paper 2 years ago and we began messaging. I was quite cautious because thats what you do in my situation, ha! But she ended up being a gem of a human. She was a former head hospice nurse and left the medical field due to a few reasons. She got lyme disease in 2014 and also because she became disillusioned with our medical system. She wanted to help people and she often found corruption happening over and over. For her own health, parted ways with the hospice system but greatly misses her patients. She would always offer to help me but i always declined...because i never want to be a burden on others. I enjoyed our friendship as it was. I also could feel and shes since told me, that my situation greatly saddened her and she didn't want to feel her heart hurt more. Understandably.
Last October, she wanted to drop something by. We had never met in person and when we did.....we now have hardly missed a week seeing each other 4 months later ha! She realized, without me saying so much....that no one was really taking care of me besides my food angel friend. Yes, my husband keeps me alive, and i'm so grateful but the neglect has been immense. I didn't want her to carry any of that on her shoulders so i wasn't sure how to proceed with our visits. She kept texting every week. Kept showing up. Lathering me in lavender suds. Making my hair smell like gold. I learned how professionals take care of people like me, only 5 years later haha. Anyways, her friendship makes me very happy. I always look forward to her visits and she really is just a genuinely good human.
The toughest part has been the guilt i feel. But shes amazing at helping me to work through that. She thought the toughest part was going to be me getting naked every week for someone i met through my newspaper article, ha! But, really, its her not ever feeling like she has to take care of me. She told me, that her health has been improving with our friendship and that our visits do more for her than all of her many supplements. Shes pretty honest, so i'm choosing to trust her. AND let myself deserve this. I do deserve to be taken care of and loved...even though that isn't always a natural instinct for me. Thank you Rain, you are helping my heart heal in ways i didn't know possible. There really are so many beautiful souls in this complicated world.
Thank you to many of you beautiful souls here as well for being a part of my world. I appreciate you so much.
My gratitude for her entering my life is immense and nothing less than timely (her and i met in person a few weeks before my good friend passed last fall).
If you wonder how someone stays bathed when they cannot get up to be in a shower/bath and do not have access to much in the way of caregivers....well, i shall let you know. I am sure a few of you already know about this world.
In 2017, i could still access a shower with my port etc. and sit in the bath and let the water fall on me but that was crashing me more and more. So, in 2018 when i entered a wheelchair just to make it to pee (severe decline), i went months without showering, cleaning etc. because, well i couldn't, literally. I maybe could have had moments where i could have in bed but i wasn't yet familiar with that world. I never knew what a hair washing tub was or dry shampoo and many other ways you get creative in bed land.
So, I bought a shower chair but that wasn't going well, i couldn't even hold my hands up and it was getting to the point where everything was so discombobulated 24/7 and off balance, that i truly was in not only constant crashes (and declining permanently after each crash) from attempting these showers but quite unsafe conditions. I clearly remember my last shower ever was February 14, 2019. That was a bad day. That was the day i realized my reality and gave grace for how hard i tried and fought to keep taking care of myself.
A friend from Phoenix Rising gave me some ideas on how to go about this land and i am very grateful for his help. I was truly clueless. I was waiting for Drs to intervene and have plans....but that never really happened. This board helped me immensely when i was in a very shell shocked and dark place.
Sometime in 2019, i went on amazon and saw they had these inflatable hair wash stations. I was very very weak though and generally would crash hard when i would find a friend willing to help me do this. Which, is not as often as you would think. Then, I bought a old school enameled porcelin washbasin. So, my son would help me fill it up with warm soapy water. It was incredibly hard. He would close the door and i would stare at the washbasin, and become so motivated. Try to sit up to place a towel under me. I love water so much. I miss the way it cleanses my energy daily, alone. But, i really struggled. Some weeks i could only do my face, some weeks only half my body then full out shaking, brain shut down, numbness, low O2, low HR crashing. Some weeks...the water just sat there and i could do nothing but stare at it. Hard as i may try to move.
As i've stated, i began an upswing back from land o death in 2020, fall. After beginning transdermal vitamins. So slowly, i've been able to to do this more without the severe crashes every single time. But, it was still often a trade off. Like do i want a meal this evening or a spongebath etc? On top of it i have had a few friends that stopped in to help from time to time but understandably, when they realized 4 years later i wasn't really changing....most of them have gone with the wind. I get it. No fun watching someone you love suffer. I'm so grateful for each of their presences in my life when they could. Our journeys crossed for learning on both sides. I could sometimes get my husband to do my hair but it was tough, never fun and generally to be last resort. So, i would go for as long as i could, then wait till he was having a good night say after his soccer game and its a game, i have to approach things in that way. Like so much of my life. Not predictable and many times leaving me with make do situations.
Well, enter this angel, Rain. She read my story in the paper 2 years ago and we began messaging. I was quite cautious because thats what you do in my situation, ha! But she ended up being a gem of a human. She was a former head hospice nurse and left the medical field due to a few reasons. She got lyme disease in 2014 and also because she became disillusioned with our medical system. She wanted to help people and she often found corruption happening over and over. For her own health, parted ways with the hospice system but greatly misses her patients. She would always offer to help me but i always declined...because i never want to be a burden on others. I enjoyed our friendship as it was. I also could feel and shes since told me, that my situation greatly saddened her and she didn't want to feel her heart hurt more. Understandably.
Last October, she wanted to drop something by. We had never met in person and when we did.....we now have hardly missed a week seeing each other 4 months later ha! She realized, without me saying so much....that no one was really taking care of me besides my food angel friend. Yes, my husband keeps me alive, and i'm so grateful but the neglect has been immense. I didn't want her to carry any of that on her shoulders so i wasn't sure how to proceed with our visits. She kept texting every week. Kept showing up. Lathering me in lavender suds. Making my hair smell like gold. I learned how professionals take care of people like me, only 5 years later haha. Anyways, her friendship makes me very happy. I always look forward to her visits and she really is just a genuinely good human.
The toughest part has been the guilt i feel. But shes amazing at helping me to work through that. She thought the toughest part was going to be me getting naked every week for someone i met through my newspaper article, ha! But, really, its her not ever feeling like she has to take care of me. She told me, that her health has been improving with our friendship and that our visits do more for her than all of her many supplements. Shes pretty honest, so i'm choosing to trust her. AND let myself deserve this. I do deserve to be taken care of and loved...even though that isn't always a natural instinct for me. Thank you Rain, you are helping my heart heal in ways i didn't know possible. There really are so many beautiful souls in this complicated world.
Thank you to many of you beautiful souls here as well for being a part of my world. I appreciate you so much.
