I forget how a healthy person feels... chronic burning pain destroy all of my happiness....every single day is a fighting day .....how much days left in this world for me....those who r well live your life happily cz life gives only one chance before falling in any chronic deases. Only 26 years old...
jhon wick chronic pain is the worst I am a fourteen year old girl who has had problems all her life about 5 I had Achilles tendonitis and that really started the problems for me I started to recover from this and then after a while I started getting more problems again I was sensible to hey cuz the doctors didn't know what to do and I was diagnosed with a form of chronic pain bio mechanical chronic pain syndrome I've been struggling for nearly 3 years now and it's gotten to the point that some days I wake up and I don't know whether I'm going to be able to get out of bed or walk I'm on crutches on and off all the time I spend a bit of time in a wheelchair I used to just get there problems in my achilles then it spread to my ankles then to my knees then into my hips and now it's in my back I can hardly do an infir myself anymore my arms start to hurt from everything it's I told work I have the burning sensation and shooting pains really bad spasms it's awful and we haven't found a cure for me yet so I completely understand anybody is going through it please anybody let me know if they know of any ways to help I really appreciate it thank you!
I've grown up seeing my mum constantly in pain cause she deals with chronic lower back pain so I've always had an understanding of how hellish it is to live with pretty much constant pain and how much help you need to do even basic things (e.g. Heating a wheat bag in the microwave or picking something up off of the floor). I'm glad you made this video so that more people can understand what people like my mum have to go through on a daily basis.
BLESS YOU FOR MAKING THIS!! I really needed hear a story so similar to mine. Tears rolling down my check as the last part felt like a real human that knew my struggle. A person right in front of me that not only would hear and believe that every bit was unexaggerated and real even though it's hard to believe and makes no sense. As though you reached out to me with a compassionate hug that I've been starved for and denied for more than 10 years. I equally cried for you, my dear, as I fully knew your struggle and suffering. I reached out to hug you with support and love as if I was fine and you a kid with a giant boo-boo. When you've walked in my shoes you would understand that in order to not go completely nuts from being shut of from the world and probably 90% of awake time is either awful or on days with less pain you still only lay with eyes closed hoping sleep may help the hours pass faster. Almost no human interaction and a complete deficit of companionship, no need to use your voice and never a warm embrace or cuddle. A lot of imagination in such isolation you give things like a pillow a new purpose as the one you watch tv with or the other one you cry with. I have to find ways to fell less alone. I also put huge value on anything that puts a little smile on my face and have a since of being in an actual conversation with whoever wrote the words I read. So as that type of imagining led to You giving me a virtual hug which I have had to teach myself to value talk myself into believing in this is just as good in my imagination as real life so that a chance of some love and goodness can still exist in my world. You really had an impact on me with your video. Thank you so much for putting it out there for us. I know you hoped your story could somehow benefit a fellow human devastated by Fibro. And it sure did!! Think of it like this, hun, being able to make this video describing your own struggle went out into the universe, transformed from a knife that stabs into soft light of healing love then floated back and landed upon my heart. I was just gifted with a dose of peace and love that repaired a little hole in my spirit!! AGAIN THANK YOU and btw I've been hoping to come across someone describing life with symptoms similar to my own so that I can force my 15 and 17 year old boys to watch someday when they come to visit. I watched a min or two of quite a few videos and quickly passed because they weren't a good enough fit. THIS IS SOPT ON!!. Although only a few of many things that affect my ability to partake in life, what you did show explained, almost in my own words, what I've been saying to them for years! And this is what bothers them most. The "too tired to even shower" level of exhaustion, to them, is just a lame excuse for being a lazy slob that never wants to leave the couch. While having more patience and understanding over the past few months now that they finally believe I do suffer from the horrible disease. Still to them the laziness is just me being a crappy human that tries to blame on an invisible disease along with everything else. Now I can show your story!! They'll believe it and the lazy crappy label can vanish from existance allowing a chance to also find gentlness and compassion in it's place!! It's been an hour since I started pecking at the keys to write this and the pain has just reached the highest I can push through but worth ever second! I had to try the best I cold to explain how many ways your video brought ease and healing to my day. XOXOXO HAPPY, HAPPY, HAPPY TEARS!! Thank you for this amazing gift!!
Hi Jenenen I'm sending you a giant warm hug from Texas use it as often as you need it. I too love with chronic pain from car accident from 20 years ago. I'm keep this position keep warm, smile, don't give in to the pain, that's hard to do but I try to. Smile, a big Texas hug, much love, Linda
This is so reflective of my life. I no longer make plans to engage with others because the pain and lack of stamina will slow the others down. For those who have never suffered chronic pain always ask " what's wrong with you now". To avoid the judgement I isolate myself. This doesn't even address the anxiety , panic and depression resulting from the loss of being strong and self sufficient. I actually had someone tell me I am the perfect victim for robbery as it is visible I could not defend myself. Prayers to you for sharing and giving this a voice.
I've been living with fibromyalgia for ten years and there are still people (mainly my parents) who don't understand why I can't just pop some over the counter pain relief and come to the family events. Maybe I should send them a link to your video. Thanks for making it.
Kaleidoscope Eyes it makes me so sick to see and hear of people like that. I'm so sorry. Just always remember.... we have nothing to prove! I have to always tell myself that. Fibro SUCKS
Maybe sending the video could help....I’m sending it to some of my friends and family ....there are videos and articles I see from time to time that I send to the ones I care about to help them to understand me better....it has really helped too....seeing other people speak about the same things I do has brought more understanding from many ....then there will always be the ones that don’t get it and there is nothing you can do about that, and making yourself more stressed trying to get them too understand is only hurting you....those people you just have to keep a distance from because your life is already a struggle enough than having to constantly explain, or prove yourself isn’t healthy emotionally or physically....imho ❤️
Wow, thank you for the video. Feel so much understood because you just described my every day since my bad back surgery, I don't feel alone knowing there are others that go through what I go through daily, Thank you.
Thank you for posting this, it made me feel not so alone. It gives me something to show family and friends, because some may not understand completely but I can at least give them the tools. ❤❤❤
Amazing video and spot on. Thank you! If you know of any groups or attorneys that can help or give advice to is who are being assaulted by pain management doctors and literally ruining our lives. It makes it harder on the entire family and the fact that this can even happen tells me we have some very ignorant people making these rules.
Is that when you feel that pain in the back, knees or neck and just twitch yourself in order to make it stop or? ( I don't have time to find it out myself )
I can relate fully, the problem is very few people understand or want to understand what I go through daily....🙏
Slowlikehoney Too i'm sorry:( ❤️
emo meme Thank you, your really sweet and kind to say that
Slowlikehoney Too I'm so grateful for this supportive online Spoonie community. It's good to find people who get it 💕
I forget how a healthy person feels... chronic burning pain destroy all of my happiness....every single day is a fighting day .....how much days left in this world for me....those who r well live your life happily cz life gives only one chance before falling in any chronic deases. Only 26 years old...
jhon wick chronic pain is the worst I am a fourteen year old girl who has had problems all her life about 5 I had Achilles tendonitis and that really started the problems for me I started to recover from this and then after a while I started getting more problems again I was sensible to hey cuz the doctors didn't know what to do and I was diagnosed with a form of chronic pain bio mechanical chronic pain syndrome I've been struggling for nearly 3 years now and it's gotten to the point that some days I wake up and I don't know whether I'm going to be able to get out of bed or walk I'm on crutches on and off all the time I spend a bit of time in a wheelchair I used to just get there problems in my achilles then it spread to my ankles then to my knees then into my hips and now it's in my back I can hardly do an infir myself anymore my arms start to hurt from everything it's I told work I have the burning sensation and shooting pains really bad spasms it's awful and we haven't found a cure for me yet so I completely understand anybody is going through it please anybody let me know if they know of any ways to help I really appreciate it thank you!
I've grown up seeing my mum constantly in pain cause she deals with chronic lower back pain so I've always had an understanding of how hellish it is to live with pretty much constant pain and how much help you need to do even basic things (e.g. Heating a wheat bag in the microwave or picking something up off of the floor). I'm glad you made this video so that more people can understand what people like my mum have to go through on a daily basis.
This... I need to share this with my friends so they understand. It's everything I've never been able to put into words...
same!
Can relate to this so much 😔
BLESS YOU FOR MAKING THIS!! I really needed hear a story so similar to mine. Tears rolling down my check as the last part felt like a real human that knew my struggle. A person right in front of me that not only would hear and believe that every bit was unexaggerated and real even though it's hard to believe and makes no sense. As though you reached out to me with a compassionate hug that I've been starved for and denied for more than 10 years. I equally cried for you, my dear, as I fully knew your struggle and suffering. I reached out to hug you with support and love as if I was fine and you a kid with a giant boo-boo. When you've walked in my shoes you would understand that in order to not go completely nuts from being shut of from the world and probably 90% of awake time is either awful or on days with less pain you still only lay with eyes closed hoping sleep may help the hours pass faster. Almost no human interaction and a complete deficit of companionship, no need to use your voice and never a warm embrace or cuddle. A lot of imagination in such isolation you give things like a pillow a new purpose as the one you watch tv with or the other one you cry with. I have to find ways to fell less alone. I also put huge value on anything that puts a little smile on my face and have a since of being in an actual conversation with whoever wrote the words I read. So as that type of imagining led to You giving me a virtual hug which I have had to teach myself to value talk myself into believing in this is just as good in my imagination as real life so that a chance of some love and goodness can still exist in my world.
You really had an impact on me with your video. Thank you so much for putting it out there for us. I know you hoped your story could somehow benefit a fellow human devastated by Fibro. And it sure did!! Think of it like this, hun, being able to make this video describing your own struggle went out into the universe, transformed from a knife that stabs into soft light of healing love then floated back and landed upon my heart. I was just gifted with a dose of peace and love that repaired a little hole in my spirit!!
AGAIN THANK YOU and btw I've been hoping to come across someone describing life with symptoms similar to my own so that I can force my 15 and 17 year old boys to watch someday when they come to visit. I watched a min or two of quite a few videos and quickly passed because they weren't a good enough fit. THIS IS SOPT ON!!. Although only a few of many things that affect my ability to partake in life, what you did show explained, almost in my own words, what I've been saying to them for years! And this is what bothers them most. The "too tired to even shower" level of exhaustion, to them, is just a lame excuse for being a lazy slob that never wants to leave the couch. While having more patience and understanding over the past few months now that they finally believe I do suffer from the horrible disease. Still to them the laziness is just me being a crappy human that tries to blame on an invisible disease along with everything else. Now I can show your story!! They'll believe it and the lazy crappy label can vanish from existance allowing a chance to also find gentlness and compassion in it's place!!
It's been an hour since I started pecking at the keys to write this and the pain has just reached the highest I can push through but worth ever second! I had to try the best I cold to explain how many ways your video brought ease and healing to my day. XOXOXO
HAPPY, HAPPY, HAPPY TEARS!! Thank you for this amazing gift!!
A
Hi Jenenen
I'm sending you a giant warm hug from Texas use it as often as you need it. I too love with chronic pain from car accident from 20 years ago. I'm keep this position keep warm, smile, don't give in to the pain, that's hard to do but I try to. Smile, a big Texas hug, much love, Linda
this deserves more likes.
This is so reflective of my life. I no longer make plans to engage with others because the pain and lack of stamina will slow the others down. For those who have never suffered chronic pain always ask " what's wrong with you now". To avoid the judgement I isolate myself. This doesn't even address the anxiety , panic and depression resulting from the loss of being strong and self sufficient. I actually had someone tell me I am the perfect victim for robbery as it is visible I could not defend myself. Prayers to you for sharing and giving this a voice.
This! Not going to lie I shed a tear ❤️ To everyone else who’s going through chronic pain, we got this ❤️
Stay strong and much love!
BAD GOOD DAYS ,SYMPTOMS
RESEMBLES THE SYMPTOMS OF BIPOLARITY💥
I've been living with fibromyalgia for ten years and there are still people (mainly my parents) who don't understand why I can't just pop some over the counter pain relief and come to the family events. Maybe I should send them a link to your video. Thanks for making it.
Kaleidoscope Eyes it makes me so sick to see and hear of people like that. I'm so sorry. Just always remember.... we have nothing to prove! I have to always tell myself that. Fibro SUCKS
Maybe sending the video could help....I’m sending it to some of my friends and family ....there are videos and articles I see from time to time that I send to the ones I care about to help them to understand me better....it has really helped too....seeing other people speak about the same things I do has brought more understanding from many ....then there will always be the ones that don’t get it and there is nothing you can do about that, and making yourself more stressed trying to get them too understand is only hurting you....those people you just have to keep a distance from because your life is already a struggle enough than having to constantly explain, or prove yourself isn’t healthy emotionally or physically....imho ❤️
Wow, thank you for the video.
Feel so much understood because you just described my every day since my bad back surgery, I don't feel alone knowing there are others that go through what I go through daily,
Thank you.
I find that my bad days are influenced by the weather,in Scotland a bitterly cold windy day is the worst.
Thank you for posting this, it made me feel not so alone. It gives me something to show family and friends, because some may not understand completely but I can at least give them the tools. ❤❤❤
Good snapshot of our hell
I was inspired by this video and made my own spin off of what having a chronic illness feels like♡
Thank you I relate. But you've helped me place everything into perspective. My cloudy day has come out in your video. Good work.
Amazing video and spot on. Thank you!
If you know of any groups or attorneys that can help or give advice to is who are being assaulted by pain management doctors and literally ruining our lives. It makes it harder on the entire family and the fact that this can even happen tells me we have some very ignorant people making these rules.
Brilliant video. Good visuals.
I have chronic pain my hole life because of that i skip a lot of day at school
Is that when you feel that pain in the back, knees or neck and just twitch yourself in order to make it stop or? ( I don't have time to find it out myself )
I feel good enough to make a mess .lol..but not good enough to clean it up...........uhhhhhhhhhhhh the 500 started projects :(
I discolated My knee and Passat Outi and i got brain damage
This
Go to work......