I don't think i'm doing very well this week. So, probably move on along if you would prefer to not read a diary entry of suffering, which i blame you not. There is something cathartic about sharing and being heard. Validating. I have had one visit this month from a friend that helped me to make a food supply for that week. Other than that i see my daughter in the morning and after school but very few other visitors. No helpers. I'm not allowed to hire a caretaker for occasional help. So, i rely on the goodwill of my husband to get washed...when hes around..and thats not often this month. My husband is not a happy person and completely will not accept this reality. I am sure he is dealing with multiple mental illnesses at this point that he refuses to seek help for....so I rather do not prefer his company even though it would be ideal if he could let go of some of his anger.....and just hold my hand...and cry with me over the life we lost. I remember during one of my hospitalizations he would just stare out the window on his phone, talking to others...but he could never be there with me. I remember a coworker asking him something about how i'm doing and he just said things are not good...at all...right in front of me and then went into more detail. Then nurses came in the room shortly after and he began flirting with them, anything to escape this reality he was faced with. It made me feel like a ghost. Much of what i've been feeling again lately. I think my friends niece helping me this summer, weekly helped me in ways i can hardly explain. It lifted my heart. Allowed me to save my energy for important tasks like peeing, eating etc.
I've been having bad dreams again lately. I can't afford my private therapist right now regularly but i did schedule a session with him this week and he said i definitely have some C-PTSD stirred. Sometimes i forget. Because i go numb. Nothing feels real. I shake and sweat alot. I awaken screaming. I am in survival mode. Of course my dying friend is making me emotionally vulnerable. My daughter developing some of the SAME exact symptoms as me would eventually send me off a cliff. No surprise. At first i thought i was handling everything ok, until i realized i'm not, I'm slipping. I spend my days right now waking up to a crying little girl that doesn't feel well and i am the only person in this house that hears her. That can support and comfort her. And in 2 hours she will be in here again crying, wanting to throw up, bad headache, sore throat, burning up, vertigo etc. Every night. And nothing is taking it away. She has an appointment with a pediatric GI specialist tomorrow that i cannot go see for obvious reasons. My husband refuses to talk about anything medical so its great fun co-parenting. Trying to communicate with this Dr about why i can't be there but how she can communicate with me is super great fun. She said, "your husband is very quiet. I got so little info from him." And this is our chance. This is our chance for helpers with her. To figure this out. To get her prompt treatment. I already know what shes up against with our overwhelmed and non attentive healthcare system, why make it harder? Her stool test came back yesterday and thats the third elevated test. I do not yet know what it means. I guess we find out tomorrow and the next steps. I don't hold my breath though because i know the next steps rarely contain a solution for this type of suffering. And then, i will be there for my friend and i will read psalms to her. Everything is so incredibly real right now. These are very important people to me. I am amazed at the deep sea of urgency i contend with right now. Hence the numbing out. I am sure many can relate. We live in such heavy days on this planet Earth. So many suffering. I guess i just have to get this off of my chest. Its crushing me in many ways. I can't believe this is happening to my daughter...and so young. Its like a bad dream that i can't escape. I tell her things of hope i hardly believe at this juncture. But i tell her. I always tell her.
Just last week, i was feeling grateful for small movements i have made towards progress. Yet, this week, it feels like the ME/CFS/Lyme monster is eating me alive so often again. Symptoms i haven't had in awhile reemerging. So, i often just lay here in fetal position. Completely unsure of what to do. In so many facets. Often crying. I am appreciative of the beautiful tulip tree changing to yellow outside my window. Although my head and eyes are having great difficulty looking this week and moving and seeing things. I do hope it comes back more so i can enjoy some of the rest of fall colors.
Speaking of, when i was quite severe in early 2020, i began having dreams at times of this forest. i was deep in this November forest. Brown leaves crinkling underneath me. I ALWAYS was wearing one of the last outfits i left the house in in November 2016. Maroon cordouroy pants and a black shirt. Its quite eerie. And i'm in the middle of this deep forest that i've been in for what seems like eons. I am quite desperate and looking to survive in any way. I can never find a way out. The further i walk, the deeper i seem to get lost and i'm always running out of energy in my dreams. A pond nearby i can get water from. It seems i've been there for years because my clothes are tattered. My skin has dirt all over it, leaves entangled in my hair. And then. Sometimes. This man shows up. He appears to be a woodsman of some sort and i am laying against this tree with very little life force when he finds me. There is a fallen log my arm lays on and i am quite discombobulated and hardly conscious. I need food and water. And he kneels down upon seeing he found a person and he lifts his hand up and holds it a foot or so from m heart chakra and an energy exchange takes place. I see emerald green light. He closes his eyes. He honors my life. He doesn't know my story. Then after the energy exchange when my breathing stabilizes, he lifts me and puts me over his shoulder and we arrive near this beautiful river with a gold building and i awaken in this ivory bed and Gandalf and Frodo and all of my friends are there from the Shire. And we are all smiling. And when i awaken in this ivory bed, i am fully back to health, nourished...its so beautiful. We are all smiling. The woodsman holds his hat over his heart and bows his head and i hold my hand up and close my eyes and energy is transferred. I am so grateful. And then he departs. I've had this dream so many times. No coincidence Sleeping Beauty was one of my favorite stories as a child and then Lord of the Rings of course as i was older.
No one is coming to save me, so i must save myself. I need to apply for another grant. I have a Dr that could possibly hear of my case but hes very expensive, insurance not accepted. The office has called me ready to schedule the appointment, I just need to get the funds. I need to start a fundraiser. These are things i can do towards saving myself.
Thank you Emma Rose for sharing this song with me, 'Rescue Me'. It is timely.
I thank you guys for being with me through the ups and downs. Letting me air out the specific challenges our community faces that so few understand. One day people will read our stories, maybe, and say why did these people go through these difficult things? and so alone? Why did the world turn away? I guess thats why i share it all. I feel so completely alone at times. Which is ok when my needs are met but not so much when they are not. I kinda view life as a circle and all emotions in the circle need to be honored as they arise. Or else, i combust.
I've been having bad dreams again lately. I can't afford my private therapist right now regularly but i did schedule a session with him this week and he said i definitely have some C-PTSD stirred. Sometimes i forget. Because i go numb. Nothing feels real. I shake and sweat alot. I awaken screaming. I am in survival mode. Of course my dying friend is making me emotionally vulnerable. My daughter developing some of the SAME exact symptoms as me would eventually send me off a cliff. No surprise. At first i thought i was handling everything ok, until i realized i'm not, I'm slipping. I spend my days right now waking up to a crying little girl that doesn't feel well and i am the only person in this house that hears her. That can support and comfort her. And in 2 hours she will be in here again crying, wanting to throw up, bad headache, sore throat, burning up, vertigo etc. Every night. And nothing is taking it away. She has an appointment with a pediatric GI specialist tomorrow that i cannot go see for obvious reasons. My husband refuses to talk about anything medical so its great fun co-parenting. Trying to communicate with this Dr about why i can't be there but how she can communicate with me is super great fun. She said, "your husband is very quiet. I got so little info from him." And this is our chance. This is our chance for helpers with her. To figure this out. To get her prompt treatment. I already know what shes up against with our overwhelmed and non attentive healthcare system, why make it harder? Her stool test came back yesterday and thats the third elevated test. I do not yet know what it means. I guess we find out tomorrow and the next steps. I don't hold my breath though because i know the next steps rarely contain a solution for this type of suffering. And then, i will be there for my friend and i will read psalms to her. Everything is so incredibly real right now. These are very important people to me. I am amazed at the deep sea of urgency i contend with right now. Hence the numbing out. I am sure many can relate. We live in such heavy days on this planet Earth. So many suffering. I guess i just have to get this off of my chest. Its crushing me in many ways. I can't believe this is happening to my daughter...and so young. Its like a bad dream that i can't escape. I tell her things of hope i hardly believe at this juncture. But i tell her. I always tell her.
Just last week, i was feeling grateful for small movements i have made towards progress. Yet, this week, it feels like the ME/CFS/Lyme monster is eating me alive so often again. Symptoms i haven't had in awhile reemerging. So, i often just lay here in fetal position. Completely unsure of what to do. In so many facets. Often crying. I am appreciative of the beautiful tulip tree changing to yellow outside my window. Although my head and eyes are having great difficulty looking this week and moving and seeing things. I do hope it comes back more so i can enjoy some of the rest of fall colors.
Speaking of, when i was quite severe in early 2020, i began having dreams at times of this forest. i was deep in this November forest. Brown leaves crinkling underneath me. I ALWAYS was wearing one of the last outfits i left the house in in November 2016. Maroon cordouroy pants and a black shirt. Its quite eerie. And i'm in the middle of this deep forest that i've been in for what seems like eons. I am quite desperate and looking to survive in any way. I can never find a way out. The further i walk, the deeper i seem to get lost and i'm always running out of energy in my dreams. A pond nearby i can get water from. It seems i've been there for years because my clothes are tattered. My skin has dirt all over it, leaves entangled in my hair. And then. Sometimes. This man shows up. He appears to be a woodsman of some sort and i am laying against this tree with very little life force when he finds me. There is a fallen log my arm lays on and i am quite discombobulated and hardly conscious. I need food and water. And he kneels down upon seeing he found a person and he lifts his hand up and holds it a foot or so from m heart chakra and an energy exchange takes place. I see emerald green light. He closes his eyes. He honors my life. He doesn't know my story. Then after the energy exchange when my breathing stabilizes, he lifts me and puts me over his shoulder and we arrive near this beautiful river with a gold building and i awaken in this ivory bed and Gandalf and Frodo and all of my friends are there from the Shire. And we are all smiling. And when i awaken in this ivory bed, i am fully back to health, nourished...its so beautiful. We are all smiling. The woodsman holds his hat over his heart and bows his head and i hold my hand up and close my eyes and energy is transferred. I am so grateful. And then he departs. I've had this dream so many times. No coincidence Sleeping Beauty was one of my favorite stories as a child and then Lord of the Rings of course as i was older.
No one is coming to save me, so i must save myself. I need to apply for another grant. I have a Dr that could possibly hear of my case but hes very expensive, insurance not accepted. The office has called me ready to schedule the appointment, I just need to get the funds. I need to start a fundraiser. These are things i can do towards saving myself.
Thank you Emma Rose for sharing this song with me, 'Rescue Me'. It is timely.
I thank you guys for being with me through the ups and downs. Letting me air out the specific challenges our community faces that so few understand. One day people will read our stories, maybe, and say why did these people go through these difficult things? and so alone? Why did the world turn away? I guess thats why i share it all. I feel so completely alone at times. Which is ok when my needs are met but not so much when they are not. I kinda view life as a circle and all emotions in the circle need to be honored as they arise. Or else, i combust.
