I am a huge Ellie Goulding fan. Both the music itself and the lyrics move me. So it shouldn’t be a surprise that one of her songs embodies my feeling about my body and my chronic illness. My Blood helps explain my journey. When I saw her in person tears flowed when I heard this song live. It was a very ethereal moment, and I will never forget it as long as I live.
Let me walk you through the song.
That feeling, that doesn’t go away just did
And I walked a thousand miles to prove it
And I’m caught in the crossfire of my own thoughts
The color of my blood is all I see on the rocks
As you sail from me
These verses capture the struggle as my body was breaking down. I could barely walk or sleep. I was miserable. I had to see so many doctor and travel many miles to even figure out what was wrong with me. I struggled with the idea that my body was fighting. It is literally parts of my actual blood that doesn’t work right. And my blood was all I could think of.
Alarms will ring for eternity
The waves will break every chain on me
My bones will bleach
My flesh will flee
So help my lifeless frame to breathe
Finally I got a doctor who cared and promised he would make me feel better. He did confirm that this was a lifelong disease and there was no cure. But there was a treatment and that helped me breathe and step forward. My lifeless body could actually become something useful again. These promised kept me going.
The lost dreams I buried in my sleep for him
And this was the ecstasy of a love forgotten
And I’m thrown in the gunfire of empty bullets
And my blood is all I see As you steal my soul from me
Alarms will ring for eternity
I skip the chorus to get to the next verse for a purpose. I want to leave you with the chorus as that is my hope for my life so forgive me for the incorrect order.
This is my life as I started to heal and fight the pain. I looked back at what I wanted to do and tried to succeed instead of letting my dreams be buried. I refuse to let this disease steal my spirit but it’s a tough battle and I saw my spirit be dragged from me. But no more! I will capture it again and I will be me again!
And God knows, I’m not dying but I breathe now
And God knows, it’s the only way to heal now
With all the blood I lost with you
It drowns the love I thought I knew
This is the hope portion of the song. Treatment is the only way to heal. I am not terminal and I can live on. I can find that spirit I lost. I am working towards this more every day! I am so much better that this time last year and that’s just amazing! My mantra? I’m not dying but I breathe now.
The rune perthro is the symbol of an empty cup lying sideways. Its meaning is a mystery for practitioners of rune magic and can be used for many reasons. For me, it’s not the magical properties of the symbol of the rune that moves me; it is the fact that we can use other mythology to help understand some of the truest ideals of Christianity.
I am reading a YA fantasy novel by Rick Riordan. That will lose many people there as it’s about the Norse gods. But bear with me. Riordan uses the symbol for his deaf elf who had to decide to drink from Mimir’s well of knowledge. But to truly understand what he was being taught he had to empty himself to fulfill his destiny. This is further illustrated by the story of how Odin learned rune magic. He hung himself from a tree and then pierced his side with his spear to empty himself; to become a receptacle for the magic.
Do you see the connection? Jesus was crucified and poked with a spear. His life force left him; he as empty. His soul and biological life force were gone. Then he arose and brought with him the gift of the Holy Spirit. Jesus had to sacrifice himself and empty himself of his humanity to fulfill the destiny that Christians were meant to have. Had he not gone through, this ordeal this world would be a vastly different place.
As Christians, we have to become that empty cup. We have to give up our humanity and accept the Holy Spirit and the will of Jesus Christ. We can’t receive our destiny preaching hatred and bigotry. We must shed our preconceived notions and look at the world through Christ’s eyes. I encourage you to focus on the things Christ said and did instead of other people who try to overturn Jesus’ ideals to promote their own. Clear your mind and spend time in the four gospels. That is where I have always found the most proud ideals and changing of spirit.
Become perthro; become an empty vessel. Leave your destiny up to Jesus, not to the dice of humanity.
I have made a positive start in taking care of my body. I already feel more upbeat and healthy. Now If I can just keep it up!
Keeping to my bodies’ schedule
The first step was to embrace my body’s time clock. I am a night owl. I stay up late and sleep late. It was really bad for a while because the pain was so bad, I couldn’t sleep even when I needed to. My treatments have helped that. Now I just have to embrace the way my body is.
So my new schedule is this:
- Get home from work
- Walk with the cat
- Fix dinner
- Relax; read my bible; create
- Exercise and chores when my second wind hits
- Take a quick shower
- Read a book for fun; color
- Into bed with a comfortable movie to fall asleep to
This really seems to work well. It boosts my mood before bed and helps me get my work out. I feel less tired as I embrace that I get going again at 7:30/8:00. I have accepted my weirdness and embraced it in a way that benefits me highly.
Being health and happy
The next step was making me happy. Exercise does not make me happy. I hate it! I don’t enjoy it. I enjoy walks with Tig. I enjoy SITTING out in nature. I also hate doing chores. I finally made a schedule where I did one chore each day. But I never looked forward to it. I always felt too tired. Plus I was already down emotionally. The election is making me so sad that I have had to remove myself from it and bring back my boy band music (It always makes me feel better!).
Then I had a brilliant idea. I popped a 5ive CD into the BluRay player and started to rock out while I washed dishes. I had found the way to get exercise and get stuff done. It made me smile and I enjoyed self. So now I pop in my fave music and get my cardio on!
Not beating myself up
The last step is an important one. It is very important for people with chronic illness but it is something that everyone needs to understand: sometimes were just can’t do it all and that is ok. There are days I just don’t feel good enough to dance because I’m in pain (but I will try) or chores don’t get done. I just double up when feel up to it. I also need rest days and, even though I have scheduled them, sometimes they come on different days. And it’s ok because this empowers me. Saying no but not giving up, accepting who I am. It’s already made a difference on me both mentally, physically, and spirutally.
I have been going 120 miles per hour since my last post. I really wish I’d conquer this thing called work life balance. (Is there such a thing). I took a part time job after quitting my full time job. Then I took on another part time job because I feared I couldn’t pay all my obligations…so 6 days a wk working, plus art class for Daniel, basketball tryouts for Landyn and ….Lennon just doing toddler stuff. Plus cooking and cleaning for 6 people….my plate was full to say the least.
I really enjoyed the time I had with the boys and exploring new things with them. Now I’m back wore out…how quickly that happened.
So now I’m taking a few steps back and trying to regroup because..it’s only been a 6 wks since my two a week panic attacks. I probably should have rested more.
Self care is vitally important. and now I’m back on my care.
This year I did something a little different. I usually pick one song that resounds to me and then make goals based on what God was saying through those words. This year, for some reason, I didn’t feel like one anthem really encompasses everything I am struggling with. So there is one over all anthem (true Colors by Kesha) but then one song for each goal. Read along for each song that haunts me and what God wanted me do with it.
“With all the blood I lost with you, it drowns the love I thought I knew”
My Blood- Ellie Goulding
I feel like I shouldn’t have to add my health into my goals but this song has always stirred feeling about my body and my sickness. I have gotten over at being angry at my body, which is what these lyrics represent. But I must learn to be positive even when I feel like I am slipping backwards. My biggest problem is when I have a flare. When I get sick or start hurting because I get a setback. I can’t handle that. It’s something I plan to work on this year
“I tried to call you buy you wasn’t around”
Hear Me Now-Five
When I first started my goals, I always included being touch with my friends. I have lost friends many for stupid reasons to let things that I can control get in the way. Then that goal trickled away, and I can see the aftermath. I will not let that happen. I will reach out and I will reconnect with the ones I lost because sat around twiddling my thumbs. I will work hard not to let others fade away as well.
“Don’t turn over the page”
Fake It, Bastille
This song has encouraged me to think about starting over. There is one person who this applies to, and I’m not sure what God wants me to do with this one. I first have to accept that I am starting over and then truly go with how God wants it without a secondary agenda. So help Lord, turn over the page.
“Back when we were kids”
I have a habit of looking back at scrapbooks and feeling stupid for the men I dated and the friends I had; I may have forgiven them but I still haven’t forgiven myself. I need to work on this and embrace the god times I had. I made major process when I pulled out the scrapbook of my friend’s wedding. They aren’t together anymore and I was worried about it: how it would affect me and how it might affect her that I had it. But looking through it, it was a testament to the strong bonds of friendship with all but one photo focuses on celebrating her and our close group of friends. It was a love story- just not the one I thought it would be. It was ours. And friends shouldn’t be ashamed of their love stories.
“We’ve got to let go of all our ghosts”
Send My Love- Adele
While the “Kids” goal is to forgive myself, this goal is to continue my healing process about those who hurt me. I have worked hard at forgiving others who have wronged me. I haven’t gotten to the point where I am actually wishing them well. I’m one step on forgiveness, apathy. I thought that was the end. But it’s not and I have to finish the process.
“I’m hanging on to the end of this rope”
Lonely Town- Brandon Flowers
It seems like I am always battling my depression. It’s not a constant but frequent enough. I am very frustrated to have to even add this in my goals. But when I have those episodes, I need to do better to pull myself out. You’ve seen goals before that help this: to write, to craft, to do things that make me happy. This year I am focusing on a better plan to deal when these episodes can’t be prevented (and this will always happened; that is the biggest struggle).
“Let it all go. Set it all free.”
The Veil- Peter Gabriel
I am not myself very openly. I work in a place where I worry about what others think. I said I would give up on that a long time ago yet I worry about my job and how people won’t think I can do it because I don’t believe the same things they do. I watched Snowden and was upset with myself. This guy gave up a cushy job, great pay and a home in paradise to expose the truth, and I sit behind my computer and hide from portion of the world I know will judge me. I talk about integrity but I don’t always follow it. This is just simply not acceptable. This year I will lift the veil (slowly) and know that God is on my side.
Sincere: sinˈsir/ (adj.) free from pretense or deceit; proceeding from genuine feelings.
My pastor has good sermons but his delivery can be a little lackluster. I’ve learned that if I listen to him and write notes that I get so much more from him. He said something that has stayed with me since last Sunday. He said,
nothing is more offensive to God and to man but to not be sincere.
This statement really got me thinking. What does it mean to be sincere? To me it means to be myself, no matter what the consequences are or what others may think of me. There were things that I thought I couldn’t share about myself because of what others would think of me. I thought that people would see me as being different. I’m learning now that being different is sometimes a qualification for one, really enjoying my life and feeling and being authentic. I feel like this past year I have truly been my sincere self. I have shared parts of my self to my closest friends and they never one batted an eye about being supportive of me.
How do you define sincere?
I am. Yes, that is a complete sentence. Everything, I think or experience is usually filtered through those two words.
I am strong. I am loving. I am…
I’ve focused more on shaping my world with my thoughts. My thoughts towards myself and those around me. The more I really focus on God and what I believe His purpose is for my life…things fall into place. The more I let go..the more things fall into place. I’ve spent the last week focused on selfcare, which has really changed how I interact with my children (and hubby) and how I treat my consumers at my new job.
I’ve made a few more food items this week, which I will share. And I have read every single day. Unfortunately, my Bible reading has fallen behind again…but I do read the Bible everyday. I am so excited to love my life again . I didn’t really how unhappy I was until..I shook off whatever it was holding me back. I.am.free