Thanks so much! I have EDS, POTS, MCAS, CCI, and AAI. It can feel like these conditions are stealing everything from me. This song speaks to what I feel on the bad days, particularly the last few days. Thank you for writing a song for people with chronic illness.
Praying that you are doing much better these days and if not, please know that there is always hope by being in the embrace of Jesus. Jesus is the solid rock and even when the sea roars under our feet, yet with Christ as our Saviour, He surely keeps us standing on His solid foundation. Always and forever may Jesus bless you and yours, Amen.
Three years since your post, hopefully you are in a better place now. Even so, through all the ups and downs in life, there is Jesus whom makes the way to overcome when down comes along the way, even the ups being as it should be. Praying that the chronic illness is a thing of the past, but if it is not so, keep pressing forward and foremost lean on Jesus, call upon Him and surely He will sustain you, even while the aches are present, you will stand...being grounded solid even in the midst of the storm is possible and Jesus is that solid rock which we can be secured on and all glory being His for without Jesus' embrace we would get swept away with the wind. Wherever you may be at in life, keep looking to Jesus for He surely is the only embrace that matters and keeps us moving forward. ❤🕊❤
I don't have EDS, but I do have Endometriosis, PMDD, Vaginismus, Vulvodynia, and Chronic Migraines and relate so hard to this. Chronic illness, especially one that revolves around chronic pain is so damn hard, and it's such a lonely place to be when the majority of the population can't understand. Thank you so much for sharing this gem.
Can not imagine what you are going through and words do no justice to the pain one may suffer, though there is One whom surely knows all of our aches and pains and His name is Jesus. Not that you do not already know so, but in case you were not aware, thought it would be good to share that Jesus knows what you're going through on a level that is beyond human understanding and all He seeks from us is to call upon Him for help and foremost to know whom He is is comfort beyond words. May you be blessed, wherever you may be in life and please know that Jesus loves you so much. ❤
I have EDS, POTS, MCAS, MALS, May-Thurner Syndrome, CFS, and many more diagnoses. I've dealt with a lot of pain, surgeries, hospitalizations and conversations about me being "crazy" and music is the only thing that helps. Thank you for putting this out here❤
I have EDS and Epilepsy and I REALLY do miss the “ OLD ME “. I can’t nearly do the things that I use to do and I feel like that’s aggravating and so depressing! I am constantly in pain and I use to not be bothered by flashing lights, at least not to my knowledge but now I have a seizure if I am not careful around them. I use to be able to get down onto the floor and play with my oldest nephew but I can’t get down to the floor and play with my one year old nephew and I couldn’t do that with my nephew and my niece as they were a little baby. I can only rely on Naproxen to get me through my day, other wise I am in constant excruciating pain and it makes my work shift so hard to get through, I have even had to leave work early before because I was in such horrible pain.
Omg this song is making me cry! It is so my life now . I don't have EDS but I have CRPS, fibro, and igan nephropathy. Before I got sick I was very active and now I can't even walk. Thank you for writing this
I have Long Covid, CFS, and POTS. I don't know how or why I'm still here, I guess I still have a little hope that we chronic illness survivors will be healed.
I...... Wow... Just wow! I've been searching for so long to find songs that I can relate to on a chronic illness level, and this one takes the cake! Especially as a Christian!!! I have EDS, MCAS, Celiac Disease, POTS, some mild heart issues regarding my heart valves, chronic pain syndrome, amplified pain syndrome, possibly small-fiber neuropathy, and I also have mitochondrial disease, along with a few other conditions that are moreso symptoms now than standalone issues (e.g. hearing loss and optic atrophy). This song speaks to me so much! I've had to be homeschooled my entire life and isolated from people because of my conditions. I was never able to experience a normal life, make friends, and even do school most days. I'd always try to attend church though, even if it would make me awfully sick. While I've only been hospitalized a few times in my life, I've basically been in doctors offices monthly, if not weekly a lot of the time. Nobody understood my pain and issues, not even my own doctors, and they would just write me off as attention-seeking, even on the days that I could barely even function because of how sick I was. I know many others have gone through the same thing. To those of you who are still seeking answers, don't stop. Don't let them blame it on pure mental health issues when you feel like it's more physical or neurological. Don't be scared to ask for specific tests or for them to look into specific diagnoses. After all, it's YOUR money they're taking. And please, remember to give yourself plenty of grace. It's ok to feel bad and sick. If you think you're being overdramatic, then make sure to check yourself. List your symptoms and their severities. Everyone is different after all, and just because you may have a different reaction to x thing than another person would, doesn't mean you're less valid. Love yourself, trust your gut, and instead of the world's tornadoes of stress causing you to fall, use them instead to fly! That doesn't mean you have to fly out of the tornado immediately, but it does mean that, by getting your ground and your bearings, you can work up at your own pace of escaping that tornado.
In my personal experience for life on earth being a smoother ride, it all comes from Jesus; the God of Heaven and earth. Nothing to do with religion, simply just to believe Jesus, whom He says He is and what He has done for us, that we may have assurance for salvation in Paradise, when this life on earth comes to a close and while we are here, the ride being less bumpy. On earth there will always be trials and aches yet with Jesus as our solid rock to stand on, Him being the foundation which we are built on, which can never be shaken or broken, that surely is the best spot to be on. Not sure if you know about the gospel of Jesus and if you do not yet, please know, to believe Jesus is the Saviour is assurance. Jesus has finished all the work for us by Him being set on the cross, that we may have assurance of what is in front of us, around us and foremost the most important part, to have the assurance for salvation. Jesus has paid the full price for us by His blo0d being shed on the cross, being buried and on the third day He rose to Heaven to take His place on the Throne of God and in turn sending us His Holy Spirit which seals us with His assurance for eternal life in Paradise. To have the assurance of God, all it takes is to believe Jesus is the Saviour, that He paid our sin debt in full with His own perfect blo0d, which is to believe that He forgives us completely upon believing He is God and Saviour. If you have not yet read the book of John in the Bible, highly recommend reading it as soon as possible, for John 3:16 sums up the gospel of Jesus. The Bible is food for our soul, even though it is a hard read, yet to simply just read and believe His Word is food for our soul, the return of goodness that we receive is beyond measure and human words can not describe the beauty of His Word being fed to our soul. As I sit here and write, it not only applies to the reader but also to me, cause the Bible is the best kind of medication,food one can take and reminder is much needed for we live in a dark world that is falling apart at a rapid speed and the only thing that will sustain us is Jesus our God and He is the living Word; the Bible. Anyhow, went of more than intended yet I hope you are blessed, in Jesus name, Amen. 🕊❤🕊
Wow, this absolutely floored me. The lyrics Rachel... so amazing! Ya know, people talk about how brave we are, but it's God who sees us through each step of the way.
I’m currently really struggling through losing my ability to play my instruments due to my EDS. I’m 18, and it’s hard to imagine a whole life ahead of me without being able to play music to help me through the hard times (let alone as a career), so finding this song and having someone else play and sing the words i feel in my heart was incredibly comforting. 💕
I am sorry that you are not able to your instruments anymore. This life on earth sure can be challenging, though when one door closes, there is always another door that can be opened and many times it ends up being a much needed blessing in disguise. Don't know your situation in life but from what you wrote, sounds like life is tough and really wish it was not so. Not here to force anything on you, simply wanted to say there is light at the end of the tunnel. The best kind of light that is revealed at the end of the tunnel is the light of Jesus. Yea, it can be a touchy subject for many folks but I hope it is not so for you. If you do not know about Jesus, would like to say that He loves you so very much...yea may sound weird if you do not know of His love yet, though if you do believe Jesus, you know what I am trying to say. If you have not yet heard of Jesus, please consider looking into finding out what He is about and am not referring to any sort of religion. Jesus truly loves you with a love that is beyond what even I can explain in full detail, though what He has blessed me with so far is way too good and to not share with others would be sad on my part. Reading the Bible can be a hard read, though it is so worth reading cause the love story of Christ is a story of love and truth and His love and truth is like no other love and truth. If there is not yet an understanding of Jesus' love, surely it is so worth finding out what amazing love He offers and all at no cost, simply takes a little bit of faith and Jesus will reveal His love that the heart will know with assurance that His love is true love. Well, if I could be of any help with more info, please feel free to ask and if not, may you be blessed anyhow with the comfort that Christ offers. ❤
Thank you so much for giving so many of us a voice. I'm 37 and just within 4 years have I been diagnosed with several chronic illnesses, including Ehlers Danlos. But I've fought to get the diagnoses for 20 years, after watching my Dad suffer and die from it. He also didn't get diagnosed til his 30s and had Doctors treat him like a hypochondriac. I'm thankful he's with Jesus, but I wish I could ask his advice on how to deal with this and still be a good parent. My kids show symptoms too and I pray so hard they don't have it. Your lyrics about not being able to dance really touched me. I used to do dance and several other activities that I've had to give up...it feels like one by one my old life is taken. You captured the emotional pain and prayers so well. God bless you and I'll meet you someday in the clouds.🙏🙏
Cant stop crying right now. The words to this, are how I feel everyday. I have chronic fatigue, paid and cptsd. Now in diagnosis for ME. Not sure how much more I can take. Feel like I've lost my memory as well. Big hugs to all who feel this way, you aren't alone.
An amazing song and sung with such passion, a passion that Christ Jesus blesses His sons and daughters with for His passion is pure love...some are given less some given more and our Father has blessed you with more, His heart to sing with such passion as you do. May our Lord Jesus continually and always be the Waymaker for you, your family and families and His love sustain you all, through all the good and bad times and His will be done. Glory, honour and praise always to our King Jesus, here on earth and in Paradise, forevermore. ❤ Amen and Maranatha! 🕊
Oh my friend, I so get you! I am now 58 and went through my entire life not fitting in anywhere. Being told Im an attention seeker, or a drama queen, or a hypochondriac and on it goes, Im sure most of us have heard them all at one time or another. I always knew there was something different about me and, although I will never be "better", I am better for knowing. I dont take much for pain but I let the pain guide me and make me aware of my restrictions. I certainly not grateful for have EDs, but, with the help of Jesus, I have let him use my illness to make me a better, more considerate, and less judgmental person. I have a wonderful husband and 3 lovely children by adoption. My life is very small now but God speaks to me in visions and I pray a lot for those around me. I feel I have a use, and that is good. Bless you my friend. Look after yourself.
Thank you for making this song, people don’t sing enough about chronic Illness let alone EDS. I have EDS, POTS, Hashimotos, I’m 16 and I have had major surgery on my back, I had 2 herniated discs and two bulging discs. I thought the surgery would fix everything but it didn’t. I now have a fractured spine, more bulging discs, faucet joint problems etc. But my point is thank you, it feels like finally there is a song that understands what I’m going through.
Agree...especially in this generation where songs seem to have lost the passion and soul which older generation songs had, yet even in older generations it was a rare thing to find such passion as Elizabeth sings with and puts in her songs as the message of hope is conveyed and done so well. ❤
I have played this over and over. You could be singing about my life. The song is brilliant and so is your voice. Thank you for helping me cry. EDS is vicious.
Wow this song truly hits the heartstrings. Dealing with leaving behind so many things I loved and were such a big part of all my life for so long makes this song super relatable right now through this season. EDS is a hard thing to deal with. But, I must find what God wants me to do through it all. Certainly not an easy journey but one that is here for a reason. He holds the world in His hands.
Beautiful. It speaks to me so deeply, as I’m trapped in a body that I can hardly move because it’s weakened by a disease that took away the strength I used to have. Thank you for sharing this.❤️
@@jackp8687 When all else fails, there is always calling upon Jesus, cause Jesus surely is the way maker and even though we may have aches for a life long period, yet to trust Jesus, talking to Him and asking Him for comfort and healing, that goes a long way in the sight of God and His mercy surely is like no other and so worth the little He seeks from us, simply to believe in Jesus as Saviour and talk to Him and the return from Him is beyond what any human could offer. Praying for your dad and also for you that Jesus' comfort may be upon your family. ❤
I'm missing church tonight because of more medical tests. It's all from a lifetime of overlooked comorbidities of a connective tissue disorder. The song is really moving and I cried. I serve a living God and I know he fulfills his word of promise. I have a perfect body waiting for me. And I'm trusting that he'll reveal to me that I have enough faith to claim that body while I'm still here, now. He's a healer. He conquered the death that were born into, and that we walk in for about 80 years. The song was really beautiful, and I encourage you to make more. Maybe someday you could craft & perform some of the lyrics I've written on some of my walks with Jesus.
I am a 14 year old with (suspected) EDS(I don’t know if I should call it “suspected” because like more than one doctor has said like that they think I have it and things like “you know with your Eds” and stuff but there are also a few doctors who don’t really think I have it) I have many other health issues along side that, including Immunodeficiency, POTS, dysautonomia, gastroparesis, asthma, GERD, alopecia, scoliosis, (suspected) MCAS, etc. and a ton of other things that we don’t have a diagnosis for (my doctors really think that I have some sort of extremely rare like autoimmune thing or something) I mean personally I’ve had chronic illnesses my whole life. I was diagnosed with immunodeficiency at 2 and have been getting infusions ever since. This has always been apart of my life, but it wasn’t until around 5th grade when it started getting bad. It was like it was controlled, but then all the sudden it wasn’t. I started showing weird symptoms and old symptoms started worsening. When I was 3 I was misdiagnosed with Celiac disease (it ended up being gastroparesis, but I was gf for 6 years then they said “let’s try her with gluten” because I kept on saying it wasn’t gluten and I didn’t change with gluten so they let me stay on it and said it was a misdiagnosis. Then I started having really bad stomach symptoms again and they said I had a gluten sensitivity. Then they said that I didn’t. Then I did. Then I didn’t. Then I did. Then I didn’t. They didn’t know. They also misdiagnosed me with lactose intolerance, but even as a 5 year old I said that gluten and dairy weren’t the problem) The first symptom I had was all the sudden my stomach was horrible. I could barely eat and every time I ate I would get absolutely HORRIBLE stomach pain and I would get EXTREMELY bloated. My mom though it was just a virus or something until we were in cape cod and I couldn’t even eat my ice cream from my favorite ice cream place ever. Then I started having weird bowel movements(they were all the time, they were a very weird consistency either like water or like rocks, and they were very funny colors (ranging from red to yellow to purple) Then came the bruises (i always bruised easily, but this was different) I would get these itching spells on my thighs near my butt, and the spot that was itchy was HOT like you could feel the heat through my pants and it would be very very red (I wouldn’t itch it even though I wanted to so bad) and every time the next morning I would wake up with a humongous bruise (it would start around my tailbone and extended all the way halfway down my thigh, and they HURT) no one knew why. Then the hot flashes. Then the hair loss. Then the passing out. Then my stomach and colon stopped working. I had to have fleet enemas EVERY SINGLE DAY for 2 years. I was diagnosed with rectal prolapse and would have to physically push it back into my body. I started getting rashes and hives every time I showered or got hot. I got mysterious “swelling” on top of my skull (they don’t know what it is so that’s what they call it) My eye started turning in. My joints started dislocating. I was a swimmer for 7 years. I loved sports. I did swim, soccer, dance, gymnastics. I was a very active kid. I loved swim. I swam on 3 different teams. It was my life. I loved it. And then all the sudden I couldn’t do it. I couldn’t play Soccer or do dance or gymnastics. I would give ANYTHING just to be able to go back and do one more meet, one more race, one more game, one more performance. I would give anything to be able to be that kid again. I miss that kid so much. I miss the kid who was full of energy and life and who genuinely loved life. The kid who everywhere she went was always upside down or swinging on things or doing cartwheels and handstands and flips and tricks. I miss the kid who loved to run around and play and be a kid. I miss that kid so so much. She didn’t deserve this. She didn’t deserve any of this. She deserved the world, but she didn’t get it. She deserved every opportunity life had to offer. People used to describe me as someone who’s “smile and presence just lit up every single room she walked into” and “who was always smiling no matter what” and who was “fun and energetic and just so full of life.” I was described as “a bright light in a world that had so much darkness” I miss that light. I miss it so much. I try, I try to keep it on, but it’s hard. It’s really hard. I miss myself. But I can’t change it. I miss my old self so much and I would give anything to get her back.
Hello, love! That's such an inspiring story to hear that you're still pushing on and doing your best. I don't have a lot of your symptoms, but I do have EDS, asthma, chronic lung disease, Celiac disease, POTS, MCAS, immune issues, Mitochondrial disease, and bowel and bladder dysfunction among some other stuff. I just want to say that I absolutely admire your strong perserverence. Giving up things that you love or never being able to do them in the first place is such a hard thing to have to go through. It's perfectly ok to feel sad, upset, angry, or any emotion that you feel! But beating yourself up over it is never a good thing (not saying you are, but just in case). And I know it may not seem like you're strong or tough sometimes, but trust me, you're an incredibly strong person for your age! I hope you can find some help soon! Have you tried pain management therapy or getting into art? Those things have helped me when I'm going through my own treatments or times of sadness. I know it's probably weird to hear coming from a total internet stranger, but I care about you and I'm here with you in spirit! Keep your chin level with the ground, my friend! You're doing amazing things and you can only become stronger.
@@pizzatime3752 Thank you so much this means so much to me. As far as pain stuff, we have tried an outpatient pain clinic at my local hospital that didn’t do anything, and art used to help me a lot but as I got older it seems to stress me out more than help (I’m kind of a perfectionist like I’m not one but I also kind of am like as a kid if I colored one little tiny thing the slightest bit outside of the line (like so small that you didn’t even notice it) I would have to turn the page and switch to another page because that page was “ruined” and also I think as I got older it’s been harder for me to be able to like put everything away after I use it (because of my fatigue and stuff especially recently because I have very low iron but yeah) and then other things we’ve tried are like oils and pain killers (not narcotics but other pain meds I don’t want narcotics I hate them I hate the way they make me feel and stuff) and things like mediation and everything and none of it seems to help. We are currently in the process of getting me into an inpatient pain clinic at the bigger hospital I go to but it’s a long process and my doctors there are helping make it like go faster but it’s still a long wait they think the earliest I’d be able to get in is I think they said like June or July at the earliest but yeah. And actually before COVID one of my doctors recommended a pain clinic thing and we were looking into it and were like starting the process but then Covid happened and it was all shut down and then last year we kind of had to wait to start the process of the pain clinic again because last year was a really really tough year medically for me (I had 3 major surgeries in less than 5 weeks, 1 of them being an emergency surgery at 3 am, another one being to fix my rectal prolapse and the other to rearrange my entire digestive system and my body really like shut down last year so every time we tried to start the process something else happened yk) but yeah. Sorry this is so long but again thank you so much it means so much to me and I wish you the best with everything you have going on medically and you are so strong as well. Thank you I wish you the absolute best and don’t forget that no matter what you are so strong and you will be okay (even though I know that saying honestly can be kind of maddening at least to me because it really doesn’t feel like everything will be okay but I have to believe that everything will work out in the end even if it’s not the way you thought it would or wanted it to) take care of yourself and don’t stop sharing your story either
This should be on Spotify!! So proud of you Rachael; you wrote exactly how it feels! And Elizabeth, thank you for bringing the lyrics to life so beautifully! You both have incredible hearts and such talent (:
The line that spoke to me the most was. “It’s not just the pain that hurts my heart, it the life I didn’t start.” Comment the line that you felt closest to 👇🏼 Stay strong Zebras! 🦓
I have hEDS and RA… this feels like me… but I realized that while I’m trapped in these circumstances, i can’t let the bars deny me a life. You find ways around it. We’ve never known life outside of this but we can’t let this disorder stop us from being happy. Finding happiness is on us, fuck EDS.
I'm 27 and have had chronic pain in my right ankle since childhood and other areas, it's gotten worse since then and now having lots of other symptoms of Ehlers Danlos syndrome and considering seeing my primary care provider and then hopefully get diagnosed. I miss when the pain wasn't chronic every day and when I didn't need ankle braces. 😭🙃🦓 I used to dance and realizing now it probably made my chronic pain worse and EDS worse even though undiagnosed.
Would it be okay if I cover this on my Instagram? Of course I would give credit to you for writing this song. I really love this song and can relate because I have EDS also! I would love to do a cover on my music account to spread awareness to EDS. If you’re OK with this would you mind posting the chords for piano/guitar in the comments?
Chronic disease robs us of so much potential. Never give up advocating for yourselves, esp you ladies. God Bless!
Thanks so much! I have EDS, POTS, MCAS, CCI, and AAI. It can feel like these conditions are stealing everything from me. This song speaks to what I feel on the bad days, particularly the last few days. Thank you for writing a song for people with chronic illness.
Praying that you are doing much better these days and if not, please know that there is always hope by being in the embrace of Jesus. Jesus is the solid rock and even when the sea roars under our feet, yet with Christ as our Saviour, He surely keeps us standing on His solid foundation. Always and forever may Jesus bless you and yours, Amen.
As someone with chronic illness, grieving my old self, I can completely relate to this beautiful song. Thank you so much for this.
Three years since your post, hopefully you are in a better place now. Even so, through all the ups and downs in life, there is Jesus whom makes the way to overcome when down comes along the way, even the ups being as it should be. Praying that the chronic illness is a thing of the past, but if it is not so, keep pressing forward and foremost lean on Jesus, call upon Him and surely He will sustain you, even while the aches are present, you will stand...being grounded solid even in the midst of the storm is possible and Jesus is that solid rock which we can be secured on and all glory being His for without Jesus' embrace we would get swept away with the wind. Wherever you may be at in life, keep looking to Jesus for He surely is the only embrace that matters and keeps us moving forward. ❤🕊❤
I don't have EDS, but I do have Endometriosis, PMDD, Vaginismus, Vulvodynia, and Chronic Migraines and relate so hard to this. Chronic illness, especially one that revolves around chronic pain is so damn hard, and it's such a lonely place to be when the majority of the population can't understand. Thank you so much for sharing this gem.
Can not imagine what you are going through and words do no justice to the pain one may suffer, though there is One whom surely knows all of our aches and pains and His name is Jesus. Not that you do not already know so, but in case you were not aware, thought it would be good to share that Jesus knows what you're going through on a level that is beyond human understanding and all He seeks from us is to call upon Him for help and foremost to know whom He is is comfort beyond words.
May you be blessed, wherever you may be in life and please know that Jesus loves you so much. ❤
I have EDS, POTS, MCAS, MALS, May-Thurner Syndrome, CFS, and many more diagnoses. I've dealt with a lot of pain, surgeries, hospitalizations and conversations about me being "crazy" and music is the only thing that helps. Thank you for putting this out here❤
With autoimmune disease of my own and colonic inertia. Your song has me bawling.
I have EDS and Epilepsy and I REALLY do miss the “ OLD ME “. I can’t nearly do the things that I use to do and I feel like that’s aggravating and so depressing! I am constantly in pain and I use to not be bothered by flashing lights, at least not to my knowledge but now I have a seizure if I am not careful around them. I use to be able to get down onto the floor and play with my oldest nephew but I can’t get down to the floor and play with my one year old nephew and I couldn’t do that with my nephew and my niece as they were a little baby. I can only rely on Naproxen to get me through my day, other wise I am in constant excruciating pain and it makes my work shift so hard to get through, I have even had to leave work early before because I was in such horrible pain.
Omg this song is making me cry! It is so my life now . I don't have EDS but I have CRPS, fibro, and igan nephropathy. Before I got sick I was very active and now I can't even walk. Thank you for writing this
My dad has CRPS and I feel helpless.
Brave and beautiful. In Christ alone, our HOPE is found. He is our strength... God bless you x
I have classical EDS and I had to hold back tears because of this and I'm a man thats almost 30. That doesn't happen very often
I have Long Covid, CFS, and POTS. I don't know how or why I'm still here, I guess I still have a little hope that we chronic illness survivors will be healed.
I...... Wow... Just wow! I've been searching for so long to find songs that I can relate to on a chronic illness level, and this one takes the cake! Especially as a Christian!!!
I have EDS, MCAS, Celiac Disease, POTS, some mild heart issues regarding my heart valves, chronic pain syndrome, amplified pain syndrome, possibly small-fiber neuropathy, and I also have mitochondrial disease, along with a few other conditions that are moreso symptoms now than standalone issues (e.g. hearing loss and optic atrophy). This song speaks to me so much! I've had to be homeschooled my entire life and isolated from people because of my conditions. I was never able to experience a normal life, make friends, and even do school most days. I'd always try to attend church though, even if it would make me awfully sick. While I've only been hospitalized a few times in my life, I've basically been in doctors offices monthly, if not weekly a lot of the time. Nobody understood my pain and issues, not even my own doctors, and they would just write me off as attention-seeking, even on the days that I could barely even function because of how sick I was. I know many others have gone through the same thing.
To those of you who are still seeking answers, don't stop. Don't let them blame it on pure mental health issues when you feel like it's more physical or neurological. Don't be scared to ask for specific tests or for them to look into specific diagnoses. After all, it's YOUR money they're taking.
And please, remember to give yourself plenty of grace. It's ok to feel bad and sick. If you think you're being overdramatic, then make sure to check yourself. List your symptoms and their severities. Everyone is different after all, and just because you may have a different reaction to x thing than another person would, doesn't mean you're less valid. Love yourself, trust your gut, and instead of the world's tornadoes of stress causing you to fall, use them instead to fly! That doesn't mean you have to fly out of the tornado immediately, but it does mean that, by getting your ground and your bearings, you can work up at your own pace of escaping that tornado.
In my personal experience for life on earth being a smoother ride, it all comes from Jesus; the God of Heaven and earth. Nothing to do with religion, simply just to believe Jesus, whom He says He is and what He has done for us, that we may have assurance for salvation in Paradise, when this life on earth comes to a close and while we are here, the ride being less bumpy. On earth there will always be trials and aches yet with Jesus as our solid rock to stand on, Him being the foundation which we are built on, which can never be shaken or broken, that surely is the best spot to be on.
Not sure if you know about the gospel of Jesus and if you do not yet, please know, to believe Jesus is the Saviour is assurance. Jesus has finished all the work for us by Him being set on the cross, that we may have assurance of what is in front of us, around us and foremost the most important part, to have the assurance for salvation. Jesus has paid the full price for us by His blo0d being shed on the cross, being buried and on the third day He rose to Heaven to take His place on the Throne of God and in turn sending us His Holy Spirit which seals us with His assurance for eternal life in Paradise.
To have the assurance of God, all it takes is to believe Jesus is the Saviour, that He paid our sin debt in full with His own perfect blo0d, which is to believe that He forgives us completely upon believing He is God and Saviour. If you have not yet read the book of John in the Bible, highly recommend reading it as soon as possible, for John 3:16 sums up the gospel of Jesus.
The Bible is food for our soul, even though it is a hard read, yet to simply just read and believe His Word is food for our soul, the return of goodness that we receive is beyond measure and human words can not describe the beauty of His Word being fed to our soul. As I sit here and write, it not only applies to the reader but also to me, cause the Bible is the best kind of medication,food one can take and reminder is much needed for we live in a dark world that is falling apart at a rapid speed and the only thing that will sustain us is Jesus our God and He is the living Word; the Bible.
Anyhow, went of more than intended yet I hope you are blessed, in Jesus name, Amen. 🕊❤🕊
Wow, this absolutely floored me. The lyrics Rachel... so amazing! Ya know, people talk about how brave we are, but it's God who sees us through each step of the way.
...Hard to look at the old me...dont give up on me.
EDS, changes everything..as we struggle to find our new norm. Thank you!!!
I dont have EDS, however, I have BCS, it's very rare and affects one in a million. This song had me in tears , that's exactly how I feel
I’m currently really struggling through losing my ability to play my instruments due to my EDS. I’m 18, and it’s hard to imagine a whole life ahead of me without being able to play music to help me through the hard times (let alone as a career), so finding this song and having someone else play and sing the words i feel in my heart was incredibly comforting. 💕
I am sorry that you are not able to your instruments anymore. This life on earth sure can be challenging, though when one door closes, there is always another door that can be opened and many times it ends up being a much needed blessing in disguise. Don't know your situation in life but from what you wrote, sounds like life is tough and really wish it was not so. Not here to force anything on you, simply wanted to say there is light at the end of the tunnel. The best kind of light that is revealed at the end of the tunnel is the light of Jesus.
Yea, it can be a touchy subject for many folks but I hope it is not so for you. If you do not know about Jesus, would like to say that He loves you so very much...yea may sound weird if you do not know of His love yet, though if you do believe Jesus, you know what I am trying to say. If you have not yet heard of Jesus, please consider looking into finding out what He is about and am not referring to any sort of religion.
Jesus truly loves you with a love that is beyond what even I can explain in full detail, though what He has blessed me with so far is way too good and to not share with others would be sad on my part. Reading the Bible can be a hard read, though it is so worth reading cause the love story of Christ is a story of love and truth and His love and truth is like no other love and truth. If there is not yet an understanding of Jesus' love, surely it is so worth finding out what amazing love He offers and all at no cost, simply takes a little bit of faith and Jesus will reveal His love that the heart will know with assurance that His love is true love.
Well, if I could be of any help with more info, please feel free to ask and if not, may you be blessed anyhow with the comfort that Christ offers. ❤
Thank you so much for giving so many of us a voice. I'm 37 and just within 4 years have I been diagnosed with several chronic illnesses, including Ehlers Danlos. But I've fought to get the diagnoses for 20 years, after watching my Dad suffer and die from it. He also didn't get diagnosed til his 30s and had Doctors treat him like a hypochondriac. I'm thankful he's with Jesus, but I wish I could ask his advice on how to deal with this and still be a good parent. My kids show symptoms too and I pray so hard they don't have it. Your lyrics about not being able to dance really touched me. I used to do dance and several other activities that I've had to give up...it feels like one by one my old life is taken. You captured the emotional pain and prayers so well. God bless you and I'll meet you someday in the clouds.🙏🙏
You sang my life ... im a zebra too and passed it to my son and we get it from my mother's side & yes we lead trapped miserable lives
He has pots too & he handles his a lot better than I do
Cant stop crying right now. The words to this, are how I feel everyday. I have chronic fatigue, paid and cptsd. Now in diagnosis for ME. Not sure how much more I can take. Feel like I've lost my memory as well. Big hugs to all who feel this way, you aren't alone.
An amazing song and sung with such passion, a passion that Christ Jesus blesses His sons and daughters with for His passion is pure love...some are given less some given more and our Father has blessed you with more, His heart to sing with such passion as you do.
May our Lord Jesus continually and always be the Waymaker for you, your family and families and His love sustain you all, through all the good and bad times and His will be done. Glory, honour and praise always to our King Jesus, here on earth and in Paradise, forevermore. ❤ Amen and Maranatha! 🕊
Oh my friend, I so get you! I am now 58 and went through my entire life not fitting in anywhere. Being told Im an attention seeker, or a drama queen, or a hypochondriac and on it goes, Im sure most of us have heard them all at one time or another. I always knew there was something different about me and, although I will never be "better", I am better for knowing. I dont take much for pain but I let the pain guide me and make me aware of my restrictions. I certainly not grateful for have EDs, but, with the help of Jesus, I have let him use my illness to make me a better, more considerate, and less judgmental person. I have a wonderful husband and 3 lovely children by adoption. My life is very small now but God speaks to me in visions and I pray a lot for those around me. I feel I have a use, and that is good. Bless you my friend. Look after yourself.
"It's life I didn't start" 😢
The biggest pain for me. I pray everyday for relief.
Beautiful im in tears have eds. Have you the lyrics for me? Thank you for this BEAUTIFUL song
This deserves so many more views than what it has because it is comforting and relatable!
Thank you for making this song, people don’t sing enough about chronic Illness let alone EDS. I have EDS, POTS, Hashimotos, I’m 16 and I have had major surgery on my back, I had 2 herniated discs and two bulging discs. I thought the surgery would fix everything but it didn’t. I now have a fractured spine, more bulging discs, faucet joint problems etc. But my point is thank you, it feels like finally there is a song that understands what I’m going through.
It's just impossible to find songs that convey the emotional pain that goes along with this illness, but this is SO. GOOD. Thank you for writing this.
Agree...especially in this generation where songs seem to have lost the passion and soul which older generation songs had, yet even in older generations it was a rare thing to find such passion as Elizabeth sings with and puts in her songs as the message of hope is conveyed and done so well. ❤
This Song has alot of meaning to me
I have played this over and over. You could be singing about my life. The song is brilliant and so is your voice. Thank you for helping me cry. EDS is vicious.
Wow this song truly hits the heartstrings. Dealing with leaving behind so many things I loved and were such a big part of all my life for so long makes this song super relatable right now through this season. EDS is a hard thing to deal with. But, I must find what God wants me to do through it all. Certainly not an easy journey but one that is here for a reason. He holds the world in His hands.
I just got diagnosed with chronic illness and this song got me in tears..... Love you....
Beautiful. It speaks to me so deeply, as I’m trapped in a body that I can hardly move because it’s weakened by a disease that took away the strength I used to have. Thank you for sharing this.❤️
Beautiful song. This is how I feel from CRPS .
Cried when I heard it
My dad has CRPS and I don’t what to do
@@jackp8687
When all else fails, there is always calling upon Jesus, cause Jesus surely is the way maker and even though we may have aches for a life long period, yet to trust Jesus, talking to Him and asking Him for comfort and healing, that goes a long way in the sight of God and His mercy surely is like no other and so worth the little He seeks from us, simply to believe in Jesus as Saviour and talk to Him and the return from Him is beyond what any human could offer. Praying for your dad and also for you that Jesus' comfort may be upon your family. ❤
I'm missing church tonight because of more medical tests. It's all from a lifetime of overlooked comorbidities of a connective tissue disorder. The song is really moving and I cried. I serve a living God and I know he fulfills his word of promise. I have a perfect body waiting for me. And I'm trusting that he'll reveal to me that I have enough faith to claim that body while I'm still here, now. He's a healer. He conquered the death that were born into, and that we walk in for about 80 years. The song was really beautiful, and I encourage you to make more. Maybe someday you could craft & perform some of the lyrics I've written on some of my walks with Jesus.
Amen and Amen! The blessings from Christ and His comfort continually be upon you and your loved ones, in Jesus name and for His glory, Amen. ❤🕊🕊🕊❤
so beautiful, so sad... I too have EDS, thank you for this.
I've just been diagnosed with ME/cfs, and this was so beautiful, it described my feelings so well! Thank you, and stay strong xx
Wow. Currently crying. Thank you from a EDS Warrior.
I am a 14 year old with (suspected) EDS(I don’t know if I should call it “suspected” because like more than one doctor has said like that they think I have it and things like “you know with your Eds” and stuff but there are also a few doctors who don’t really think I have it) I have many other health issues along side that, including Immunodeficiency, POTS, dysautonomia, gastroparesis, asthma, GERD, alopecia, scoliosis, (suspected) MCAS, etc. and a ton of other things that we don’t have a diagnosis for (my doctors really think that I have some sort of extremely rare like autoimmune thing or something) I mean personally I’ve had chronic illnesses my whole life. I was diagnosed with immunodeficiency at 2 and have been getting infusions ever since. This has always been apart of my life, but it wasn’t until around 5th grade when it started getting bad. It was like it was controlled, but then all the sudden it wasn’t. I started showing weird symptoms and old symptoms started worsening. When I was 3 I was misdiagnosed with Celiac disease (it ended up being gastroparesis, but I was gf for 6 years then they said “let’s try her with gluten” because I kept on saying it wasn’t gluten and I didn’t change with gluten so they let me stay on it and said it was a misdiagnosis. Then I started having really bad stomach symptoms again and they said I had a gluten sensitivity. Then they said that I didn’t. Then I did. Then I didn’t. Then I did. Then I didn’t. They didn’t know. They also misdiagnosed me with lactose intolerance, but even as a 5 year old I said that gluten and dairy weren’t the problem) The first symptom I had was all the sudden my stomach was horrible. I could barely eat and every time I ate I would get absolutely HORRIBLE stomach pain and I would get EXTREMELY bloated. My mom though it was just a virus or something until we were in cape cod and I couldn’t even eat my ice cream from my favorite ice cream place ever. Then I started having weird bowel movements(they were all the time, they were a very weird consistency either like water or like rocks, and they were very funny colors (ranging from red to yellow to purple) Then came the bruises (i always bruised easily, but this was different) I would get these itching spells on my thighs near my butt, and the spot that was itchy was HOT like you could feel the heat through my pants and it would be very very red (I wouldn’t itch it even though I wanted to so bad) and every time the next morning I would wake up with a humongous bruise (it would start around my tailbone and extended all the way halfway down my thigh, and they HURT) no one knew why. Then the hot flashes. Then the hair loss. Then the passing out. Then my stomach and colon stopped working. I had to have fleet enemas EVERY SINGLE DAY for 2 years. I was diagnosed with rectal prolapse and would have to physically push it back into my body. I started getting rashes and hives every time I showered or got hot. I got mysterious “swelling” on top of my skull (they don’t know what it is so that’s what they call it) My eye started turning in. My joints started dislocating. I was a swimmer for 7 years. I loved sports. I did swim, soccer, dance, gymnastics. I was a very active kid. I loved swim. I swam on 3 different teams. It was my life. I loved it. And then all the sudden I couldn’t do it. I couldn’t play Soccer or do dance or gymnastics. I would give ANYTHING just to be able to go back and do one more meet, one more race, one more game, one more performance. I would give anything to be able to be that kid again. I miss that kid so much. I miss the kid who was full of energy and life and who genuinely loved life. The kid who everywhere she went was always upside down or swinging on things or doing cartwheels and handstands and flips and tricks. I miss the kid who loved to run around and play and be a kid. I miss that kid so so much. She didn’t deserve this. She didn’t deserve any of this. She deserved the world, but she didn’t get it. She deserved every opportunity life had to offer. People used to describe me as someone who’s “smile and presence just lit up every single room she walked into” and “who was always smiling no matter what” and who was “fun and energetic and just so full of life.” I was described as “a bright light in a world that had so much darkness” I miss that light. I miss it so much. I try, I try to keep it on, but it’s hard. It’s really hard. I miss myself. But I can’t change it. I miss my old self so much and I would give anything to get her back.
Hello, love! That's such an inspiring story to hear that you're still pushing on and doing your best. I don't have a lot of your symptoms, but I do have EDS, asthma, chronic lung disease, Celiac disease, POTS, MCAS, immune issues, Mitochondrial disease, and bowel and bladder dysfunction among some other stuff.
I just want to say that I absolutely admire your strong perserverence. Giving up things that you love or never being able to do them in the first place is such a hard thing to have to go through.
It's perfectly ok to feel sad, upset, angry, or any emotion that you feel! But beating yourself up over it is never a good thing (not saying you are, but just in case). And I know it may not seem like you're strong or tough sometimes, but trust me, you're an incredibly strong person for your age! I hope you can find some help soon! Have you tried pain management therapy or getting into art? Those things have helped me when I'm going through my own treatments or times of sadness.
I know it's probably weird to hear coming from a total internet stranger, but I care about you and I'm here with you in spirit! Keep your chin level with the ground, my friend! You're doing amazing things and you can only become stronger.
@@pizzatime3752 Thank you so much this means so much to me. As far as pain stuff, we have tried an outpatient pain clinic at my local hospital that didn’t do anything, and art used to help me a lot but as I got older it seems to stress me out more than help (I’m kind of a perfectionist like I’m not one but I also kind of am like as a kid if I colored one little tiny thing the slightest bit outside of the line (like so small that you didn’t even notice it) I would have to turn the page and switch to another page because that page was “ruined” and also I think as I got older it’s been harder for me to be able to like put everything away after I use it (because of my fatigue and stuff especially recently because I have very low iron but yeah) and then other things we’ve tried are like oils and pain killers (not narcotics but other pain meds I don’t want narcotics I hate them I hate the way they make me feel and stuff) and things like mediation and everything and none of it seems to help. We are currently in the process of getting me into an inpatient pain clinic at the bigger hospital I go to but it’s a long process and my doctors there are helping make it like go faster but it’s still a long wait they think the earliest I’d be able to get in is I think they said like June or July at the earliest but yeah. And actually before COVID one of my doctors recommended a pain clinic thing and we were looking into it and were like starting the process but then Covid happened and it was all shut down and then last year we kind of had to wait to start the process of the pain clinic again because last year was a really really tough year medically for me (I had 3 major surgeries in less than 5 weeks, 1 of them being an emergency surgery at 3 am, another one being to fix my rectal prolapse and the other to rearrange my entire digestive system and my body really like shut down last year so every time we tried to start the process something else happened yk) but yeah. Sorry this is so long but again thank you so much it means so much to me and I wish you the best with everything you have going on medically and you are so strong as well. Thank you
I wish you the absolute best and don’t forget that no matter what you are so strong and you will be okay (even though I know that saying honestly can be kind of maddening at least to me because it really doesn’t feel like everything will be okay but I have to believe that everything will work out in the end even if it’s not the way you thought it would or wanted it to) take care of yourself and don’t stop sharing your story either
Thank you for making this song and vid!! Stunning voice ❤ love from a fellow warrior!!
I can relate to this so much
This made me cry. It so relatable and I love how it is worded in this.
Beautiful and heart breaking.
You really toucht my heart ..
This should be on Spotify!! So proud of you Rachael; you wrote exactly how it feels! And Elizabeth, thank you for bringing the lyrics to life so beautifully! You both have incredible hearts and such talent (:
Morgan M thanks girl 💜
Keep checking Spotify over the next week or so it should be up there soon :)
It's out on spotify open.spotify.com/album/2qW7h22tokhb8EZJ0oeJXC
The line that spoke to me the most was. “It’s not just the pain that hurts my heart, it the life I didn’t start.” Comment the line that you felt closest to 👇🏼 Stay strong Zebras! 🦓
Like I’m trapped in a body that’s not my own. And to be honest, I don’t even know what it’s like to feel at home anymore.
Like I’m trapped in a body that’s not my own. And to be honest, I don’t even know what it’s like to feel at home anymore.
Damn didn't think I'd find a song about eds. I used to be a dancer too, can barely type this sentence now
wow thats incredible that you did this for your friend !!!!!! OMG you are just incredible !!!!!!!!!! You are truly an angel
@rachel tosh my favorite chronic illness warrior. This reminds me of your poems.
This song is so beautiful and sends such a powerful message
Thank you so much for voicing exactly how I feel 😓🥰
This had me in tears! Simply beautiful lyrics and so relatable :( I've been grieving my old self lately..
This is great awareness plus your voice is soooo beautiful
Wow what a beautiful song and it is sang with such passion. It has blessed me so much.
So beautiful, had me in tears💞 this song helped me so much, thank you✨💓
this is so cool to see! I have eds too
Beautiful song with a powerful message ❤️
Finally a new song! I love your songs
This is sooo beautiful and the way tell the story is incredible ❤️
Beautiful song 💜
Great song and very true message.
Eds type3 sufferer here 😭 this connects to me
You are so precious! What a beautiful sweet anointing voice God has given you 💞
God doesn’t exist
@@gabbynelson8862 I am sorry you think that. But for those of us who believe he is real, he is everything.
Almost 2years since I was diagnosed with mg and I'm still on grieving|acceptance stage. 💔😢 Hoping and praying for a miracle 🖤
Would you mind to share the chords, please? I'd like to learn to sing the song... Thank you so much in advance...
I have hEDS and RA… this feels like me… but I realized that while I’m trapped in these circumstances, i can’t let the bars deny me a life. You find ways around it. We’ve never known life outside of this but we can’t let this disorder stop us from being happy. Finding happiness is on us, fuck EDS.
I'm 27 and have had chronic pain in my right ankle since childhood and other areas, it's gotten worse since then and now having lots of other symptoms of Ehlers Danlos syndrome and considering seeing my primary care provider and then hopefully get diagnosed. I miss when the pain wasn't chronic every day and when I didn't need ankle braces. 😭🙃🦓 I used to dance and realizing now it probably made my chronic pain worse and EDS worse even though undiagnosed.
Words that I can’t say myself. Thank you for making this. ♥️a zebra
Incredible song!
OMG Beautiful
Very cool! #TeamJesus
Would it be okay if I cover this on my Instagram? Of course I would give credit to you for writing this song. I really love this song and can relate because I have EDS also! I would love to do a cover on my music account to spread awareness to EDS. If you’re OK with this would you mind posting the chords for piano/guitar in the comments?
Yes!! And let me know when you do so I can see it! Send me an email and I’ll send the chords
@@elizabethjoy3830 Okay! I’ll definitely let you know!! :)
I emailed you. 💕😘 and thank you so much!!!
@@Kayla_Suzanne can i have chords please