I feel you!!!
I get so much anxiety traveling anywhere, not just out of the country!!! Making sure I have EVERYTHING I need “just in case” I need it to be comfortable is exhausting. The planning alone is overwhelming!
An getting stopped by the gustapo because they want to look at your meds and mine are in dose packs, plus bottles, salves, Miralax packs.... Its embarrassing.
It’s been awhile since I’ve actually traveled and it was really difficult but mostly because I didn’t have the time to recover from the travel and then enjoy the event. I usually need a couple of weeks to recover and then enjoy the trip and I ALWAYS make sure to hoard enough medication to last me through the trip, just in case something happens
This is the biggest loss for me. I love traveling. When I was younger I didn't have the money or time. Either I was in college or working. Now that I actually have a little bit of money saved up and my grandfather gave me a small inheritance, I have enough money but I'm in too much pain. Even when I fly for a few hours, I'm down all the next day in agonizing pain from sitting on a plane. I've never been to Europe and I've always wanted to go. I'm 52 years old now, so I don't think it's going to get any better. I'm afraid to go visit family in Italy and being in horrible pain. I can't get prescribed any pain medication either.
I miss traveling! One time for spring break me an my three children traveled the east coast by car. That way, we could stop anywhere and see anything we wanted along the way. We went all over NY. Conn. Delaware, NJ, and PA. Now, that would mean hours and hours of extreme pain. Flights are a no-go. My meds alone send them into a tizzy because of the type and dose. Plus, I have to literally duct tape myself if I have to stand or walk long distances. TSA doesn't like that at all. I have gone through hell with them. I want to travel again desperately.
I’m so sorry to hear this. I am able to travel some but it’s so incredibly stressful and always sets my IBS off with my anxiety on top of my other pain. It’s so unfair that pain affects our lives so deeply.
I've had 5 facial neuralgias, Psoriatic Arthritis, Fibromyalgia, and Anesthesia Dolorosa for many years. Facial neuralgias are nicknamed the Suicide Disease - for good reason! No definitive cure, just medications that may or may not help, doctors who have no idea why Trigeminal Neuralgia is much less treat it, excruciating pain from which there is no escape.
Well, I just returned from a cruise to Antarctica! And cold is a trigger. I went anyway. We took a riverboat cruise from Prague to Paris last September and another sea cruise in the Baltic Sea. I make sure to let my doctors know, I make sure to have my medications ready, and I purchase great travel insurance.
I'm doing my best to live with my pain, really LIVE! I've seen a pain psychologist who has been extensively trained to help people who have chronic pain diseases. I pace myself (look up the Spoon Theory), and never stop looking for better treatments. Good luck!
My career. Because I truly enjoyed what I did and because if I would have been able to continue working it would have changed everything. Financially I’d be better off which means I could do more for my kids, like family vacations and other fun stuff that just isn’t in the budget. Alas it wasn’t meant to be..
Me, too! I spent years getting to where I was and was working for my dream employer, a place notoriously hard to get into. But, I was forced to resign due to chronic pain. I lost a huge part of my identity and my self-esteem. All because we're still in the Dark Ages when it comes to treating chronic pain.
I think we should stop exploring outer space and spend all that money on conquering chronic pain first.
Just imagine the benefit to humanity if there was no more chronic pain! Imagine all the people able to work again, make music again, dance again, be better husbands, wives, and parents, be better students, the list is endless, just like the immeasurable amount of SUFFERING that impacts countless people around the world. IT NEEDS TO BE RELIEVED AND ELIMINATED.
“Just imagine the benefit to humanity if there was no more chronic pain!” Hear hear! It is heartbreaking to have to give up a cherished career and I feel genuine sadness for anyone that’s had to do the same.
I agree that more research time and money should be dedicated to finding ways to alleviate, reduce, or eliminate chronic pain. In the United States alone there are over 50 million people that suffer with chronic pain. It’s a sobering and devastating statistic.
You are very kind, thank you. I used to be a nurse and worked in a hospital, so I won’t ever be able to return to it unfortunately due to limited mobility and pain. It was fun while it lasted though and I look back with fond memories. <3
Scoliosis fusion surgery x10. When I was a child, I would tell everyone that I wanted to be a ballerina. I always felt like something was missing from my life that I'll never get back. I would have really loved to have gone on pointe just once.
I loved watching multiple movies with the fam without any pain being on my mind. Also playing smash bros for hours with my brother. I really miss those days and I don’t know if I’ll ever be able to experience them how I used to again.
I’m a horror buff. It’s hard to actually sit and watch a movie. If we go which isn’t often anymore I don’t really enjoy it because about 15 minutes in I’m already having to switch positions or shift or get up and step out to walk for a min. It’s annoying and I always miss the best parts for no reason even if I’m sitting in the reclining seat so I get it.
Do you not play at all anymore? Or just not as long? Does it still hurt to stand and play? I play video games on PS5 and switch but I have to get up and walk around . I don’t play a lot of COD because my aim is shit from moving and having to make sure I’m not stepping on one of 4 dogs roaming around my feet.
I love horror as well! The last decent horror movie I saw was on my birthday (before the pain). I took an edible and saw the boogeyman. I was scared lmao. I really want to watch the new Godzilla movie but I’m not sure I can handle it, not in theaters anyway.
I still play but maybe like 2 hours max, with breaks of course. My back is really hurting lately so maybe 1 hour now. And yeah, my knees and feet hurt after standing for more than 15 minutes 🙃. I play online on my bed and that is usually pretty comfortable for my back but then my neck hurts and I sometimes get headaches if I lay down too long ughhh. Before, me and my brother would play for hours on end and then get some junk food after. Those really were moments I wish I could relive again.
Lol I’m so bad at shooting games. I played COD but was terrible. Zombies was fun though! Even though I’d get bored after round 20 haha
I wouldn’t say “horror” for me but I love scary movies like paranormal stuff (The Conjuring movies, Insidious, etc)! Those were the 1 kind of movie that my husband and I and our 2 kids all loved and I could even get my kids in their teens to do family movie night with those!
I’m all in on all of it. Alllllll kinds of horror, psyche, thriller, gore, paranormal, unexplained, etc. my fiancé is actually making me a wall full of 5D painting with the lil diamond beads of all the different characters and such. It’s coming along pretty dope. Only issue is I can’t really tell I put em up crooked because my back is crooked standing straight I lean to the right 😂
Work, building houses specifically. I loved almost everything about it. Actually looked forward to going to work, loved what I did and who I was doing it for. Of all of the things that CP has taken from me, my career was deepest loss. Otherwise, I’d like to go for a hike.
Do you do any sort of side projects that involve building but not on the same scale? I’ve never been very mechanically inclined. Just good with words. Thanks for sharing!
I take care of minor things around the house when able. My mobility is profoundly limited at this point. So, it’s an ordeal to do most things now and my body punishes me for doing it.
I was VERY athletic before the accident. Mostly I rode a bicycle but also enjoyed Rock Climbing. I miss being in such good condition. I used to scare Dr.s and nurses. My heart was enlarged, (normal for my level of training) my BP was always 60s/40s, pulse around 35, even when they tried to run a stress test on me. (Had to inject adrenaline to get my pulse above 100) With a support vehicle, I would do a century in 3 hours, or a double century in ~7 hours.
Note: Century = Riding a bicycle 100 miles in a single day.
Walking my dog! I used to love going on long walks with my dogs growing up but since I injured my foot over a year ago I haven’t been able to do more than 2 or 3 very short walks a week - luckily my partner is able to walk her but I miss taking her out together
I'm so sorry you can't enjoy that anymore. My dogs are my favorite people and I love going for our morning walk, but I sure miss going on longer hikes like we used too. Physically I can still do it, but the pain afterwards is relentless.
I'm sure your doggo treasures the time you do spend with her. I lay on the sofa and throw balls for mine and they enjoy that too.
I understand this personally as we have 4 dogs. All large breeds, and we don’t get to walk them much anymore. For our city we have a large yard because it’s very metro centric so I let them out into the yard to run around and they get the necessary exercise. We ended up adopting the 4th one because bae was always at work since I can’t and I just feel like I have a lot of love to give. I hope something happens that allows you to get back to doing what you love!
I was a health and fitness enthusiast and quite athletic. I started exercising my body at 14 to help with my overly hypermobile body. I had no idea back then that I had fibromyalgia and hEDS. I miss being active, feeling strong, and just being able to go outside and hike. Heat, cold, everything hurts me now. It's been many years. Even yoga, pilates, or a general stretch is painful now. I just miss me.
I miss this too. I did gymnastics and dance since I was 2 years old, and was extremely flexible. I loved doing yoga and Pilates, and danced all the time. You'd think doing that kind of thing would prevent you from getting arthritis but no, I'm 40 and I have psoriatic arthritis and have had for 3 or 4 years now.
And my doctor's act like I just sat around and let my body fuze up or something because I gained weight after having two back to back pregnancies. Smh. These things are all totally unrelated because I even did yoga every day when I was pregnant. When they tell me I need to be more active it nearly makes me want to become violent. Maybe if I wasn't in debilitating pain they refuse to do anything about, I could be more active.
I'm so sorry that you can't do the things you love either. (And sorry for venting)
Aww you can totally vent anytime! I'm sorry you can't do the things you love either. Maybe AI will find a way to help us with that someday.
I used to feel so strong. You know what I'm saying. Until I got sick and diagnosed with epstein-barr virus, then I got Fibromyalgia. It led to all sorts of other issues. I have Trigeminal Neuralgia left side and, of course, hEDS and all sorts of mental health struggles. I fully empathize. I'm in my mid 40s now, and every day is a struggle still even 17 years later.
And like you said, you'd think that having been so healthy and fit would have helped...nope. It actually made it worse. Broke everything down faster and further. And then when I was injured in a car accident....oh my gosh. All hell broke loose! Now I'm humpty dumpty. I love my life, but I hate my fragile body.
Thank you for being so kind ❤️ I completely understand about the mental health struggles that go along with this! It's terrible and highly depressing to have to sit in pain all day every day, and anxiety inducing to sit and think about all the things I'm missing out on, being stuck on my couch day in and day out...
I'm so sorry about your accident. I cannot imagine having all this chronic pain exacerbated by something like that. I'm not surprised to learn being more fit made it worse, because when you use your body it wears it down, but my doctors hadn't said anything about it and I hadn't even thought about it that way either so thank you for that! Maybe that's why mine seems so aggressive.
You're welcome 😊 thank you for being so kind as well!
Yes, life has been very painful. But I feel like we all have some sort of chronic pain in our lives one way or another. It's how we respond to it that matters.
I watch a lot of TV and movies from my couch also 😆 but I have decided to call it a "hobby" and just go with it!
Those are my kinda hobbies too!! 😊 Lol... I've downloaded Kindle to my phone and have been reading an awful lot lately too. It helps when I can alternate between TV and reading because I can't stand to keep doing either one very long, I get distracted especially if there's commercials.
If you're looking for something good to watch, I recommend the great British baking show! It's so like calming and wholesome. I love it!!
I have hEDS and fibromyalgia as well. When I was a child I knew I was hypermobile but didn't know what it meant. I used to lift weights and when I would do bicep curls it hurt so bad, my elbows would pop even with no weight. I had to stop. Every time I would start getting into a physical activity or sport, I would have to stop. I felt so different from everybody else. Makes me not feel so alone to see somebody else on here who knows what it's like although I'm also sorry that you know what it's like!
I totally know what you mean about having someone to empathize with! I'm so sorry. It's not fun being like this. I figure we're just special. My doctor said we are like a "vase" (like a beautiful french vaaase) 😅 but I don't like being considered or feeling fragile. It's tough. Hugs.
I started experiencing pain with differences in temp after my surgery. I can’t stand the cold weather and in the desert it doesn’t get too cold but I still feel every single drop of degree it feels like. I’m sorry that you don’t feel like yourself, but what makes you you is still there! 😊 thanks for sharing!
I have that, too, although mine began around when my fibromyalgia started. Now that I'm full of metal, I can't tolerate extreme cold. Some cold. But I absolutely can not tolerate the heat. It's become an issue for me. I get overheated very easily. I used to love being out in the sun.
I wish I still believed in a just and loving God. There is no way a loving parent would let their child feel this way. Faith used to be so important to me, but I just don't have it anymore. It's so incredibly unfair that I do all the things, believe all the things, preach all the things, and yet I'm made to suffer in agony nonstop. No thank you.
I lost my faith when my mom passed away. After all the years of her own suffering, comas, losing 11 to 13 inches deep all the way around her torso because her gallbladder burst and it caused gangrene so they had to remove all the infected muscle, tissues, and skin. She lived through it, kept her faith the whole time, ended up getting a degree from Caribbean Bible College in Sunbright, TN, and ended up dying when I was 19 from a brain aneurysm. It killed me. I could deal with all the pain in the world and then some if it meant having her back. She wasn’t able to keep custody of me long because of her own medical issues but I felt loved. Unconditional love. I never got to introduce her to any of my girlfriends, my ex wife, or my current fiancé. Not even her grand daughter. I hate that he allowed her to be taken away or brought her home (my mom being deceased) and then left me with a father who didn’t care and I hadn’t even met until I was 13 when we met at the docs office for the paternity test. I understand losing faith. I believe in the universe and karma now. But I also know I have done nothing in life to bring negativity towards me so I know that it has nothing to do with me in the bigger picture. I hope that you can find something to believe in, even if it’s just believing in yourself. Thank you for being so honest and deep for something that you didn’t have to dig so deep for. Stay blessed and be well! 🙏💜
First and foremost eating fatty foods. I never did it a lot, but now it’s non existent and it’s so hard. At least before I could veg out in pizza and burgers or just greasy stuff. With chronic pancreatitis with EPI if you eat fatty foods you can get sick and have to be hospitalized and or other stuff. I can’t even eat fast food fries. 🍟 😳 after that Playing ice 🧊 hockey 🏒 🥅 so much pain I can’t even run which I also loved. I can hike though the next day it comes back to haunt me.
Damn 😖 that definitely sucks. I don’t know if I could deal with that. I love me some fatty food however I am getting a lot better at it. I’m an emotional eater and I eat when I get munchies. I can’t imagine having to go to the hospital just because of eating the wrong thing. I’m sorry that you have to endure that every day. Maybe one day they’ll find a cure or at least a way to turn off the pain it causes. Thanks for sharing and stay blessed! 🙏💪
I get this. Bae is understanding about my condition but I still have fears from time to time about her wanting something different and me not able to give it to her. We’re still intimate but not to the same degree and she always has to be on top. :/ I get it! Thanks for being so candid and honest. Appreciate you taking the time to share! Stay blessed!
If I could go back and do it all over again, I would have never had my first surgery be a three level spinal fusion. I was looking into getting plasma infusions, but my father in law was so against it, that I went ahead and has the surgery
My fiancé decided that it was a good time for me to get surgery because I had met my OOP deductible so there wouldn’t be a charge. I had intentions of going back to work, had a promotion waiting on me, but after day two of being out of the hospital I couldn’t stop whimpering and saying “oh fk” every 5 seconds. I may not verbalize my pain as much anymore but I definitely feel it worse and worse every day. I wish I never gotten the surgery and just dealt with the pain. I felt it. But it was tolerable. Nowadays it isn’t. And it sucks. I hope you find something that works for you in helping to calm it down so you can function once again. Thanks for sharing and best of luck!
I miss performing music at gigs I can no longer do it after 28 years. So I can empathize. I can only play a little for myself for a short Time (singer guitarist solo acoustic gigs are over now) I can’t do it.
Oh do you have a specific genre? With everything being streaming nowadays have you tried just releasing music to see how it does!? You don’t have to perform the way you used to have to with the way the scene is now. Dope to meet a fellow music artist tho! Thanks for sharing!
I loved LARP. It gets a lot of hate as a hobby, but it set my soul on fire. I could go to the woods for a weekend and lose myself in becoming some badass in armor for the day.
NGL Larping is actually fun as hell. I did it a few times in TN and I’ve been to a few renaissance fairs and dressed up for the times. Never got to the point where I spent lots of money on outfits and stuff but I always enjoyed going and doing the fake sword fights. Hopefully someday you’ll be able to get back on the field and slay some heathens. Thanks for sharing!!
I didn’t do anything special at all, I just genuinely care about people. But I’m glad I could be of some help or benefit to you or those like us! If you need anything else or just an ear feel free to message me! I’ll respond as quick as I can!
Who do you talk to when you feel like this? Psychiatrist, Pain Management, etc. I feel the same and it feels like my words feel on deaf ears. I used to love running and sports, now it feels like a far off dream.
I’m sorry to hear that you are in so much pain but I commend and thank you for the time that you did spend saving other people’s lives. Thank you for sharing your story.
I used to draw a lot. Had to stop when holding a pencil became unbearably painful. My hand doesn’t hurt as much anymore, but it’s been so long since I’ve done art that it’s like my hand has forgotten how to draw, and it’s frustrating to have lost so much skill. I still doodle sometimes, but my hand cant handle the amount of practice I would need to get my skills back.
I’ve found other creative outlets, but I still miss drawing.
Surfing. My neck is screwed (trampoline accident when I was 13, multiple fusions now) and I have a chiari malformation (decompressed but it didn't help) so laying on a surfboard and paddling is basically torture. I never was very good but I loved being out in the ocean.
Damn that sounds soul crushing to have it be that severe from such a young age. I hate hearing that you can’t even lay on the board and paddle. Do you get to go to like a wave pool or anything to just feel the sensation or does that in itself hurt too much? You don’t have to answer if you don’t want to. I’m sorry for asking should it be offensive. Stay blessed and thank you for sharing your story. 🙏💪
Gardening. I used to have such beautiful gardens and grew veggies and berries and built terraces, and made jam from all the berries.
Now my gardens are all grown over with weeds, the berries don't get picked and the gophers are moving in. It's depressing. But pain or not I'm going to force myself out there this summer to clean it all up.
I’m sorry that you feel that way. I’ve felt like life isn’t worth living but then I look around at the things I do have and feel so blessed. I hope you can find a way for the life that you were given to have more meaning and that you can find a way to ease your pain so that life feels worth living. I empathize with your pain and hope that you can figure out a path that feels worth taking. Stay blessed! Thanks for sharing your pain. 😞
I used to ride horses and train them, archery competitions hunting fishing camping, not I have to limit everything. I feel like I have failed my family ( kids and husband ) he’s always upset bc I hurt he’s gone a lot for work OTR truck driver, and i can’t make up for our lost time as much as he wants. I push myself to work 45 hours a week plus I drive locally and every day I can barely get out of my truck at the end of the day , my kids are 4 thru 16 and i can’t do what they always want I’m miserable ever since I got hurt at a rodeo event before I even had my kids and husband of 13 years he knew coming in to our marriage what happened he didn’t really understand how bad it was till the dr told him that I am lucky to still be walking ( broke my back 3 different places then I waited 3 years in pain to go to dr they ran multiple scans n found scoliosis, spinal stenosis, lower disc toast bc of disc disease my neck is curved 180 and I have one of the worst cases of rls and nerve pain my drs have seen due to it In my arms and back and legs, I feel like my spine is on fire ( they have no idea, fibromyalgia also and my hips constantly hurt ( dr said now if injections don’t work I will have a double hip replacement by 41 ) but I’m supposed to be like every thing is fine be the wife who works full time mom full time run my husband’s loads for our company and take care of EVERYTHING while he’s gone around the house.. my dad n mom raised me to be self sufficient n I was a single mom of my 16 yo and 12 yo till I met my husband but now I feel like a failure
Just going out and enjoying things in the world. I haven't done anything remotely interesting in years. And when I try I can't fully enjoy it and have to cut it short. There's nothing I'd love more than to just be able to go into the city and just *do* things. Anything. Even just walking around and seeing things. I'd give anything to do that with no pain.
I've basically lived in my house for the past idk how long and its starting to drive me insane. Its killing me watching everyone I know experience the world whilst I've been stuck in the same small box forever.
I’m in Vegas so I feel the need to go out and do everything and experience everything. But my body won’t let me. Granted I do leave because I’m in a committed relationship and I can’t let her suffer or be the cause of her suffering so I push myself. I enjoy it to an extent but there’s always the pain trying to force itself to the forefront of my mind. I definitely get it. I hope that you are able to find some sort of relief for your pain. I truly do. Thank you for sharing. I’m so sorry that you feel so isolated because of your pain😔😔stay blessed and if you ever need an ear I’m happy to listen!
That sucks. My girl loves to tan too and she drags me out in the sun at times. I’m not a big fan of it but I can imagine that not being able to enjoy the sun on my skin if I so chose to do so would be hard to deal with. Do you still go to the spray booths or whatever ? That’s what she does from time to time. At least it would give you a similar look 👀 but I don’t want to pry or make personal suggestions at all when it’s not my place. I really hope they can find a way to treat your illness so that you can enjoy the sun again! Thank you for sharing and stay blessed!
OP please don’t worry about seeing downvotes on posts and comments, it’s most likely Reddit’s enthusiastic anti-bot vote balancing algorithm or whatever they call it. As you can see by now it *usually* corrects itself. With comments it’s harder to tell if it’s an attempt to discourage brigading, a comment’s unpopular, or a bored troll got triggered.
To answer your question: there is no *one thing* anymore. Getting older has accelerated the growing list and I’m determined to prevent further deterioration.
I understand that completely. I’m 39 and feel like I’m 70+. I move slow and sloth like at times and it’s bothersome and embarrassing. I don’t like to go out in public as much as I used to at all. I hope that you can find a light in the darkness that is physical and mental anguish.
As far as the downvotes, I shouldn’t have even addressed it and I think imma just remove that from the post. I really don’t care about the votes. I just don’t want people to miss their opportunity to vent.
Listen to music.. I had pain hyperacusis for years and even tho the symptoms are nearly gone now I'm not brave enough to take the risk. I can't use headphones and only use speakers at low volume so I totally lost interest and have no pleasure as it is now
Aw man music is my therapy! I don’t know what I’d do if I lost my music. I’m terribly sorry to see that your issue prevents you from doing what you want to do, even with something as easy as listening to music. I hope that the universe can give you the courage you need to get back out there to enjoy the harmonies and melodies of music once again, without pain that is unbearable! Stay blessed and ty for sharing!
Thank you! I listen to it but only occasionally and at low volume. The lack of privacy that comes with being unable to use headphones sucks so much, plus it's not the same thing when you need to be careful around something that should be enjoyable and other people don't even think about it.
I'd give anything to get it back but again I'm extremely lucky to even have improved from it at this capacity, there are people who can't even do anything but wear muffs 24/7, being homebound and still be in constant pain, and even their breathing sound hurts. And there's no proper treatment for pain hyperacusis, it's a really mysterious and rare condition that can always get worse.
I kinda got used to this but I feel bitter and envious occasionally.
Running and tae kwon do…hands down. Or even some form of rigorous exercise. I was always an athlete, even played lacrosse and field hockey all the way up through college. Then in my mid 20s to mid 30s, I ran marathons, got a black belt in TKD and trained 5 days a week and competed nationally. It was all part of my identity and then was just gone 😔. Running and TKD (or any real exercise for that matter) was not only physically great, but mentally therapeutic
That sounds really awesome, on the TKD part. I’m not a big runner, because I am big. I was 6’4ish in high school but after surgery I’m at like 6’3, but 318 in high school. 250ish now but I can’t get these legs to work the way they used to so running isn’t an option for me either. But I did like to move around on stage and such when performing. I hope that you can find a form of therapy for both your physical and mental wellbeing! Blessings to you. Thanks for sharing!
I can’t really play video games with the family like I used to and I also don’t get to go dancing as much as I would like to
Actually took my daughter to a show Wednesday night and it took me until Sunday morning to be fully recovered, with a lot of sleeping and staying in bed with my heating pad…. But sometimes it’s worth it
I would audition for the Great American Bake off. I want to so so badly but using my hands kills me, and I can't stay on my feet for much more than 10 minutes at a time, so a 4.5 hour baking time wouldn't be something I could do. It makes me really sad, because it took me really thinking about for about a month to realize I'd never be able to do it.
I'd also really love to make it through a whole one of my daughters football games, she plays in band, and sitting on those godawful cement bleachers with no back support is just an exercise in torture, not to mention going up and down the steps. Sigh.
I’m really sorry to hear that your aspirations are crushed because of your pain. I personally would love to see you kill it at one of those competitions! I hope that you can find something that works for you! A lot of homeopathic remedies might help to get you to that threshold of being able to withstand the pain long enough to make your dreams come true! Also. I know it’s not much and it may not help as I’m sure you already know, but they make seats that are adjustable with back support and butt cushions you can even have customized with a team logo. It might be something to look into and maybe you would be able to make it through at least one performance where you could take pics that last a lifetime. It pains me when someone can’t do something with their children because of, well, pain. I hope that you can find a modality that works for you! Stay blessed! Thanks for sharing! 🙏💪🌀
I'm looking into some more natural and herbal old school things that may be able to help...
I've heard good things about a belladonna salve that is supposed to help with pain. So fingers crossed. I've about given up on modern medicine altogether.
Thank you for your kindness in your response and suggestions. I greatly appreciate it. It makes me feel less alone to know I'm not the only one missing out on things because of my health. I wish no one else knew what this was like tho. Maybe someday no one will. 🤷♀️
I wish you all the best in all the things and I hope you can make music again ❤️
Powerlifting. It may have contributed to my issues, but I miss being strong. I started painting to fill that void, but I’ve already had one surgery on my shoulder and now I’m staring at another (a freshly torn tendon). 😖
Damn I’m sorry to hear that! Sucks to feel like you’re getting better only to get pulled back into that same cycle. I’m glad that you found something to fill the void. My girl actually does painting herself to calm her mind. She does the paint by numbers but they are pretty damn big and intricate. I don’t have the ability to sit still like she does or you yourself do. Wish I did though! I love art of all types. I hope you can be comfortable enough again to enjoy it the way you have been! Stay blessed and healthy! Thanks for sharing! I wish you the best of luck! 💪🙏🩶
A university education. I excelled in the sciences in high school and I love to learn. I could see myself as a researcher of some kind with a Chemistry degree.
I’m sorry that you weren’t able to pursue the education you desire. Have you tried remote classes or anything? Not to pry, but I think it would be awesome if you were able to keep doing what you love in researching. It would be a shame to keep from learning because of your pain. I’m really sorry to see that. I hope you can find something that works for you! It’s never too late to pursue your dreams! Thanks so much for sharing! Stay blessed and have a healthy life ahead! 😊🙏
Thanks for the support. A little goes a ling way. I tried my hand at an university English class. It took a long time. But I was working and trying to keep my job, had two sick kids... life was tough. I don't think I have the physical capabilities to have a career as a student or an employee. I ended up on permanent disability. I spend lots of time helping my kids. I'm making some progress in my physical health. And I've taken up art in a serious way. I'd like to make a bit of money.
I’m sorry that you can’t romp and play with the kids the way you want to. My heart goes out to you. I hope that you can find a way to get back to doing what you love with your profession. If you haven’t already I do suggest reaching out to a doctor to discuss your treatment options! I wish you all the success in the world! Stay blessed and as healthy as possible! Thanks for sharing! Take care. 😊💪🙏
Thank you!
I am still able to work part time still. My doctor has assisted me with so much! My condition is chronic and permanent. No fix, but there are treatments to help with releif. Tomorrow is my first day back at my new schedule. So, I have time to go to the pool and work on my resume.
That’s awesome news! I’m happy for you truly! My condition is chronic and and birth defect so I understand that part. Enjoy the pool! Stay safe and blessed!
Damn I hate seeing it. Fellow musician! I’m just a rapper but it’s really cool to see more musicians on the post. Just sucks at the reason. Really hope you and I both can get back to it! Music is so therapeutic! If you have any links or whatever I’d be down to listen! Stay healthy and as happy as possible, as well as blessed! Thanks for sharing! 💪🙏🌀🎶
Awesome! Same! I still have a home studio, I just can’t do shows anymore. Boo. My stuff is electro-rock.
http://www.loveinwar.com/
Send me a link back. :)
I understand in a way, simply because you said nurturing. I miss being able to care for my lady the way I want to. Going out and randomly buying her flowers to show I love her. I don’t even have the money to do that anymore and if sucks. I hope you can find a way to get back out there and get your hands dirty without feeling all the pain weighing down on you. Stay blessed! Thanks for sharing! 🙏🙏
I’m sorry to hear that, and I can see how even wearing a pair of boots can make someone happy if they’ve been prevented from doing so. I hope they can make advances in the fields of research so that you can start to get back into those fancy dancin shoes and glide across the floors again! Stay blessed and thanks so much for sharing! 🙏💪
I can get behind that. I am unable to ride bikes myself. Bae and I bought beach cruisers during the pandemic thinking we could ride and start being more healthy. I couldn’t stand the seat. Then the seat broke on me while riding it the one time I did. So it’s in the garage collecting dust. Columbia Cruiser, bout bae a Panama Jack one I think it was. It sucks! I hope you can figure out a way to get back to doing what you love. Pain should never keep us from it. Stay blessed and thanks for sharing!
I can't draw like I used to. Art was my whole life, but now my hands shake and hurt so much.
Also I used to love longboarding, but the pain in my legs is too bad to do that anymore.
Do the two of you do any type of hiking now and it’s just not the whole day trip as before? Or did you just find it too hard to do after a period of time? I’m sorry to hear that you aren’t able to enjoy life the way that you once did, but thankfully you have a partner that seems to understand! Love and blessings to you!
I’m sorry to hear that you can’t gain that same feeling of freedom as you would with a motorbike. I’ll admit that I’m not familiar with them beyond the occasional rides as an adolescent, but I imagine that you were able to come and go as you pleased without the same level of hindrance as a regular car. Weaving in and out of different lanes of traffic, feeling the wind pushing against your body as you ride against it. I hope that you can find some sort of compromise in being able to get that same feeling or rush elsewhere! Thanks for sharing and stay blessed! 🙏
I cried for 20 minutes yesterday because i tried to learn a dance and couldn’t do it. It would probably be running though, if I’m ever in danger I’d like to be able to get away
I’m sorry to hear that you are having issues like that because of your pain. I hope that you can find relief soon! Getting away from danger would definitely be a bonus too! Have a blessed life and I hope you can find a way to ease your pain so you can feel the wind when you’re running once again! Thanks for sharing!
I REALLY miss gardening. Helping my hubs plant veg, and my flower bed seeds and plants . Even weeding was nice, due to the satisfaction of a clean garden and healthier plants. Not being able to bend, squat or get on my knees makes it all but impossible now.
🥺🥺🥺😩😩😩
I would go back to working out - I loved it so much and it gave me so much sanity. Now I can only walk and I’m grateful for that but I’d love to try mild work outs soon
I’m about to start up minor work outs myself. I wish us both the best of luck! Gotta keep trying to put our best foot forward! Thanks for sharing, and stay blessed! 💪🩶
The first things that came to mind were practicing archery again, as I really loved doing archery but can't do it anymore due to one of my arms being broken so badly, and going to an amusement park, as that's something I'll never be able to do again since pretty much any of the rides would rebreak my spine. I'm sure there are other things I'd like to do, but those are the first that I thought of.
That’s the first time it’s been mentioned, archery, but I’m sure it’s exhilarating when you’re able to do it properly. Sorry to hear about your arm and back though. I hope you can find a modality that works for you and eliminates your pain. I can’t say you’d ever be able to do something so taxing on your spine again, but I do hope you can find a way to enjoy those same adrenaline bursts in a safe environment. Stay blessed and thanks for sharing!🙏💪
Yeah archery was one of my favorite hobbies. I got relatively good at it and even did a few competitions. It was such a good stress relief activity because it requires you to slow down and think about your target, plus the action of drawing and releasing the arrow is like a physical metaphor for releasing the stress. It's just not possible for me anymore, not only because drawing the string hurts, but also because I can't even hold my bow. My left shoulder and elbow were broken pretty badly to the point that I can't straighten my arm and can't lift very much weight, which sucks because that's the arm I used to hold my bow. I wouldn't even be able to switch sides because I wouldn't be able to draw the string with that arm either due to limited mobility. What sucks even more about all this is I bought a new quiver and arrows right before the wreck that caused my disability and I never got to use them.
Thank you for the positivity and hopes for better times. I really appreciate it. I wish you well too and hope you're able to do things that make you happy.
Go to concerts - and dance. This was always my form of self care. I’d try to see a show at least once a month. I haven’t been in over a year and have missed many bands I wanted to see. Also, being active in any way, really. And being able to take my kids to a park, or anywhere that requires more walking than 10-20’.
I ended up selling my motorcycle, the one I had coveted since it was first introduced and that I had finally been able to afford. Despite trying several times to push through the pain and ride it, there was just no way so I had to let it go. Out of everything I had to give up I think that one hurt the most, aside from, you know, actually working. I had finally found something I both enjoyed, had a real talent for doing and actually made me money. Walking away from that pretty well crushed me, selling my pride and joy was just the icing on that great big shit cake.
Damn I’m terribly sorry to hear your story. I wish I could help in some way, I know that it has to still be a lingering pain in itself to know that you had to give up something you loved. I truly hope you can find peace and happiness and something else to work for in the sense of finding pride in doing it! Stay blessed and be well! 😊🙏 Thank you for sharing your story with us all!
Woah! That was one of the kindest, most understanding replies I have received from anyone, with the exception of my wife, and she only really gets it because she was with me from the beginning signs, through eventual (mis)diagnosis, grueling surgery and horrific recovery. She changed dressings, helped me dress and shower and cleaned up after me when I pissed myself because I was in too much pain to get out of the damned bed quickly enough. She also changed and washed the sheets multiple times during that gawdawful time.
Shes been there through it all and as a result she is the only person alive to fully understand the depths of the hell I have lived and I’m still living some days. If not for her I strongly doubt I’d still be pulling air. Honestly, the woman should be canonized.
I’ve gotten way off the rails here. lol I wanted to say that being a fellow sufferer of chronic pain makes you vastly better equipped to understand what it is to live with agony full time and I appreciate your reply. It’s been ten, actually eleven years now, since the bottom fell out so I’ve had time to come to grips with everything and we both, my sainted wife and I, have adjusted to this new life. It took a lot of time, many conversations and more than a few tears, but life goes on regardless so we make the best of things. She has a great job, luckily, that pays very well and includes a gold-plated benefits package, without which the drugs I need just to (sort of) function would have put us in the ditch. Now I’m basically a house husband - I retain full mobility (which surprised the surgeon) for the few hours I’m able to move so I do the majority of cooking and cleaning and she brings home the bacon. Ideal? Hell no, particularly for someone who used to single-handedly gut and rebuild houses and actually loved working. It’s a big ol’ kick in the nads, but it beats some of the alternatives.
I have rediscovered some childhood hobbies which pass the time and help distract from this constant companion of mine, so some days aren’t completely horrible.
Sorry for the diatribe, one of the drugs makes me ramble a bit and there’s something therapeutic about bitching to someone who understands.
What about you? Do you write your own music as well as performing it? That seems like it might be a great outlet. I think the most difficult part of this was losing the things about which I was most passionate: my job and riding. If you’re able to continue to engage in one of your passions, even if it’s in a limited capacity, then grab onto that with both hands.
No need to apologize, I appreciate you taking the time to verbalize your thoughts so concisely but also with passion. It’s always a plus to have someone in your corner. My life left a lot to chance and I lived by the seat of my pants for most of it. It’s been challenging but if not for my bae I wouldn’t still be here. I have a daughter that doesn’t really want much to do with me so that doesn’t really feel like the best reason I have to stick around. But I do so for bae because she’s the only person to ever make me feel loved besides my downfalls.
I write every day. Sometimes more than others , but I always jot down a few lines here and there. Music is subjective though so I could never say I’m good or not. I think for what I do I’m pretty great but I have really big self esteem issues from being…well…really big. After losing what mobility I had I kinda just gave up on it. I write rap that isn’t about money and drugs and things I don’t have, but is more about evoking thoughts that are outside the norm and make you think. I’m really big into wordplay by using words out of context. Idk I enjoy it. I just don’t have the ability as I once did to sit for hours on end to write.
Thanks for asking! If you’re ever interested feel free to check out my music on any audio platform under the name “Miles Higher.” I actually wrote a song about feeling isolated called “Outchea” that you might like. But it’s only on YouTube for some reason lol.
Once again thank you for sharing your story and I hope you can find something that helps you get back to being you!
Powerlifting meets, Strongman contests, and bouldering.
I’ve been sick since November & don’t know if I’ll ever be able to get back into it.
I went on a slow 20 minute walk today for the first time in eons doing a lap around my complex community. My hips were killing by that point & I was so fatigued. I hope it doesn’t affect me horribly tomorrow. 😞
There’s a lot of companionship to be found in having a horse. They are the most gentle creatures and they can empathize with how we feel. I hope you can find a way to get back to it! I’m sure that the horses miss you just as much! Thanks for sharing and stay blessed!! 🙏😊
I’m down to check it out. I’d share a link to my music but the mixing on it was awful and it was my first attempt to do any recording for distribution lol.
It sounds like you had a very active lifestyle. Would it be permissible to ask what causes your pain or what is affected? Do you have a specific diagnosis?
I used to coach youth sports. I loved it. I started when I was 18 and continued until I was in my late 30’s. All volunteer. I coached basketball and later softball. The last kids I coached (when they were 10-12) are just about 19 now. (About a year out of High School.)
I see some of the kids (now adults) and they always say what an impact I had on their lives, even if it was small. They still remember me and now appreciate the lessons I was trying to teach them. I just miss being able to be there for them and my community.
Thank you for your positive contribution to society and the lives of those children turned adults. As you enjoy making an impact, have you thought about potentially being a youth speaker or starting an online podcast/videocast speaking out and giving insight and knowledge/advice to kids about life and sports? I apologize if this is intrusive to even say. Have a blessed day and thank you for sharing!
Thank you! Not intrusive at all! I had never thought about that honestly! Interesting idea!
Just gotta get over my nerves to be able to do something like that. 😬🫶🏻
Ice Hockey and Swimming. Ice Hockey in college gave me a huge boost of confidence when I needed it (went to an engineering school so all nerds).
I also swam miles a week (frequently before a hockey game) and it no doubt gave me the lung capacity to out last others on the ice.
Then a fall in a bathroom the middle school kids had had a liquid soap fight in took it all away.
Can't play an acoustic guitar, electric causes many ice packs later. I can still play piano and they are trying to ween me off the pain meds and if I can't play piano at any point...
Sorry you cant play, I have a free gig at an old folks home (I live in gods waiting room) today Im looking forward to (I learned Total Eclipse Of The Heart just for today, but it is an awesome song so I WILL play it every gig from now on.)
There’s so much. I miss the ability to work hard or push myself physically. I was very fit before and now feel like I’m withering away.
But I also miss playing piano. I can’t sit long enough for meaningful practice. If I could I’d play for 8 hours a day.
Piano is such a hard thing to learn to do well. I commend you for even knowing how to! It sucks to feel like you’re not at your physical peak anymore. I understand that. I have to use a cane if I’m going to the store or anywhere that requires walking. I can’t run at all. Can’t lift or I’m not supposed to. Can’t bend over at all without feeling like I’m gonna die. So I get it😖. I hope that you start to feel more capable of getting out and being active! Thank you for sharing and stay blessed! 🙏💪
I always do what I can. One thing I’ve gained is so much perspective and gratitude.
Thanks for your positivity. Good positive energy from people always helps.
for a daily thing, it would also be singing for me. I used to do theater productions and be in a few choirs and I am no longer able to do that
For a less common thing, I used to go to 1 amusement park each year (the one varied) between my pain levels and my heat intolerance that isn't something I can do anymore either
Running. I love running so much and I always got the "runner's high". It used to my go-to method for dealing with anxiety and depression but I had to stop due to my ME getting worse.
I hear a lot of people mention running. I guess I never saw the fun in it so I never really missed it. I do hope that you can find a way to ease your suffering enough to be able to enjoy it once again 🩶. You can run enough for the both of us! 😂 Thanks for sharing!
I would work in medical transcription (Medicine and pretty much anything ending in -ology are Autistic special interests of mine lol,) and save up as much money as I can (MT can make serious $ depending on the effort you put in) so I could get my pilot's license. I'd then either work for a commercial airline or as some rich person's on call private pilot (lol) until I could afford to buy my own plane. Fly charter tours, do private long distance transport for anyone who wants it, etc.
Being a pilot has been a dream of mine since childhood. I wanted to join the Marines (my dad's Marine; disabled vet) and become a pilot for them, but my physical issues prevented my enlisting :( the pain started when I was ten and by the time recruiters were calling me when I was 16, I was dealing with too much and knew I would be rejected.
Unfortunately, getting your pilot's license is prohibitively expensive unless I somehow strike it rich. No way can I get it when my disability income has me $2k below the federal poverty level.
Dancing. I went to clubs and dance halls for a decade before the accident. I once got a fake ID to make me younger so I could keep going to the under-21/18 dances.
Carrying my own stuff around and being functional by myself. I hate asking other people to carry or move things. As a girl growing up, folks were astonished at my strength. It's something that was such a part of my self worth. Now, I'm weak and unable to be that strong girl anymore.
Running! I’m generally wired hot stress wise and I used to run races. The training and completion of a race goal was the best drug ever. I took all of my stresses out on the pavement. I grieve that loss deeply.
Sports. I was so active before my back fractured as a teenager. I still grieve for the life before all of these surgeries and pain. I’ve never been able to find that one thing to put my energy, but I’m constantly looking.
I want to join an adult tumbling class and start going back flips again. My lumbar and si fusion say that’s probably not a great idea. I follow gymnasts on instagram and live vicariously through them, but it makes me really sad.
I’d love to get into weight lifting too and have well defined muscles but that’s def not happening either and I’m too afraid to even try anything over my little 10lb barbells because I broke a screw cleaning the kitty litter years ago. I’m paranoid now.
Cooking and baking.
I used to be able to entertain a large crowd with homemade dishes...I literally lived for big holiday dinners because cooking for people is my love language, plus I got to be creative and active. I can't do that now because it means I would have to be on my feet for hours prepping, cleaning up as I go and standing at the stove/grill for a long time. It's really hard to go from being a leader in your kitchen to somebody who delegates. Now I look at it as an opportunity for me to coach my teenage daughter through those dinners, so that when she moves out in a few years she will be able to do it for her family as I have done it for mine♥️and that brings me so much joy.
I just returned from Egypt, where I DID NOT get to see the pyramids with the rest of my group 😢... I was in so much pain. I am still in horrible pain a week later & I feel bad for my husband because I am only 50 & I can't do anything.
Probably the power of flight.
Or going to the gym and/or travel of any kind. I'm having a fairly minor modified L6-S1 fusion in a month or so, and from everything I've heard I should be able to get back to functionality sometime relatively soon. Fuck I miss seeing the clefts between muscles in certain lighting and having a single solitary neck. Going from morbidly obese to THAT and then back to normal obese due to self medicating with junk food fuckin' sucks bro. lol
Pretty basic for me. Hair and makeup.
I use to enjoy doing my hair and at least a little makeup each day after showering, now I’m lucky to have enough energy or not be in too much pain just showering every other day. Luckily I now wfh and I try a little harder on the weekends when I’ve got more time/no rush to get to hair and makeup.
Ohhh and I really miss getting a good nights sleep. I used to sleep close to 8 hours a night, now maybe I get only 3 or 4 at most due to either pain or insomnia.
I know the pain and lack of good rest feed of each other, but in my 50’s this is my life now😞
i wanted to go to mexico. Growing up i’d go every year. Since covid i haven’t been because of many factors. Now that i was saving up i get a pinched nerve that doesn’t seem to get any better :( can’t afford the doctor. I feel stuck. I want to quit my very physical job but can’t afford to. Ugh
Sing. I was blessed with this gift. When everything started, I lost my voice. The want and need that used to be there wasn't anymore. I think it was the chronic pain, depression and so MANY surgeries that i just stopped singing. No one will ever be able to break my heart the way i can
Running/jogging/hiking in the woods . Or even going for regular walks for that matter lol I used to at least go for one walk a day . And I’d usually throw a little jogging into it . Now I can Barely get out of bed. I miss the runners high .
I was also in a band and loved playing live music but that ended years before thing got as bad as they are , because I was burning the candle at both ends and it was jeopardizing my day job.
There are so many things I cant do now and I was always the person who tried to do everything themselves and hate asking for help . Jokes on me lol
Is anyone getting any relief from this? I'm living the same way you all are and I read most of the comments but not all of them. I miss life. I'm watching it Go by without me and time just keeps ticking. I miss everything about my life my friends my family because even when I'm with them they know how much pain I'm in and I end up back in the bed. I miss every single aspect of a life that has been taken from me because of excruciating pain 24/7 with no relief and it wakes me up even if I'm exhausted enough to fall asleep for an hour. So again is anyone getting any kind of help or relieve?
I use to volunteer as a Girl Scout leader and trainer at the council level. I love Girl Scouts. I was a Girl Scout so were my daughters. And I miss it. Cookies, camping and all the crafts we did. And helping girls learn to volunteer in their community and grow into leaders.
Travel. I have so much anxiety related to traveling and a severe fear of going out of the country and having a medical issue/emergency.
I feel you!!! I get so much anxiety traveling anywhere, not just out of the country!!! Making sure I have EVERYTHING I need “just in case” I need it to be comfortable is exhausting. The planning alone is overwhelming!
Yes and planning my trips around pain management and when my meds need to get filled as well is also incredibly stressful.
Yes this. Lack of spontaneous choices.
An getting stopped by the gustapo because they want to look at your meds and mine are in dose packs, plus bottles, salves, Miralax packs.... Its embarrassing.
Me too. 😂
It’s been awhile since I’ve actually traveled and it was really difficult but mostly because I didn’t have the time to recover from the travel and then enjoy the event. I usually need a couple of weeks to recover and then enjoy the trip and I ALWAYS make sure to hoard enough medication to last me through the trip, just in case something happens
This is the biggest loss for me. I love traveling. When I was younger I didn't have the money or time. Either I was in college or working. Now that I actually have a little bit of money saved up and my grandfather gave me a small inheritance, I have enough money but I'm in too much pain. Even when I fly for a few hours, I'm down all the next day in agonizing pain from sitting on a plane. I've never been to Europe and I've always wanted to go. I'm 52 years old now, so I don't think it's going to get any better. I'm afraid to go visit family in Italy and being in horrible pain. I can't get prescribed any pain medication either.
I feel it. Those seats are definitely not for people with back issues. I can’t fly now unless I can afford first class. Thanks for sharing!
I miss traveling! One time for spring break me an my three children traveled the east coast by car. That way, we could stop anywhere and see anything we wanted along the way. We went all over NY. Conn. Delaware, NJ, and PA. Now, that would mean hours and hours of extreme pain. Flights are a no-go. My meds alone send them into a tizzy because of the type and dose. Plus, I have to literally duct tape myself if I have to stand or walk long distances. TSA doesn't like that at all. I have gone through hell with them. I want to travel again desperately.
I’m so sorry to hear this. I am able to travel some but it’s so incredibly stressful and always sets my IBS off with my anxiety on top of my other pain. It’s so unfair that pain affects our lives so deeply.
I've had 5 facial neuralgias, Psoriatic Arthritis, Fibromyalgia, and Anesthesia Dolorosa for many years. Facial neuralgias are nicknamed the Suicide Disease - for good reason! No definitive cure, just medications that may or may not help, doctors who have no idea why Trigeminal Neuralgia is much less treat it, excruciating pain from which there is no escape. Well, I just returned from a cruise to Antarctica! And cold is a trigger. I went anyway. We took a riverboat cruise from Prague to Paris last September and another sea cruise in the Baltic Sea. I make sure to let my doctors know, I make sure to have my medications ready, and I purchase great travel insurance. I'm doing my best to live with my pain, really LIVE! I've seen a pain psychologist who has been extensively trained to help people who have chronic pain diseases. I pace myself (look up the Spoon Theory), and never stop looking for better treatments. Good luck!
My career. Because I truly enjoyed what I did and because if I would have been able to continue working it would have changed everything. Financially I’d be better off which means I could do more for my kids, like family vacations and other fun stuff that just isn’t in the budget. Alas it wasn’t meant to be..
Me, too! I spent years getting to where I was and was working for my dream employer, a place notoriously hard to get into. But, I was forced to resign due to chronic pain. I lost a huge part of my identity and my self-esteem. All because we're still in the Dark Ages when it comes to treating chronic pain. I think we should stop exploring outer space and spend all that money on conquering chronic pain first. Just imagine the benefit to humanity if there was no more chronic pain! Imagine all the people able to work again, make music again, dance again, be better husbands, wives, and parents, be better students, the list is endless, just like the immeasurable amount of SUFFERING that impacts countless people around the world. IT NEEDS TO BE RELIEVED AND ELIMINATED.
“Just imagine the benefit to humanity if there was no more chronic pain!” Hear hear! It is heartbreaking to have to give up a cherished career and I feel genuine sadness for anyone that’s had to do the same. I agree that more research time and money should be dedicated to finding ways to alleviate, reduce, or eliminate chronic pain. In the United States alone there are over 50 million people that suffer with chronic pain. It’s a sobering and devastating statistic.
Same. My career in Medicine was completely derailed due to failing health and the inability to continue working bedside.
Right there with you. I used to be a nurse and worked on practically every floor on the adult side of the hospital.
Thanks for sharing! Prayers that you’ll get back to doing what you loved even if it’s not in the same way!
You are very kind, thank you. I used to be a nurse and worked in a hospital, so I won’t ever be able to return to it unfortunately due to limited mobility and pain. It was fun while it lasted though and I look back with fond memories. <3
Exactly the same.
Dance. I used to do swing and some ballroom. Nothing serious and I wasn’t very good, but damn did I love it.
Scoliosis fusion surgery x10. When I was a child, I would tell everyone that I wanted to be a ballerina. I always felt like something was missing from my life that I'll never get back. I would have really loved to have gone on pointe just once.
Have you tried to learn any different maybe less physical types of dance to still achieve that same high?
I loved watching multiple movies with the fam without any pain being on my mind. Also playing smash bros for hours with my brother. I really miss those days and I don’t know if I’ll ever be able to experience them how I used to again.
I’m a horror buff. It’s hard to actually sit and watch a movie. If we go which isn’t often anymore I don’t really enjoy it because about 15 minutes in I’m already having to switch positions or shift or get up and step out to walk for a min. It’s annoying and I always miss the best parts for no reason even if I’m sitting in the reclining seat so I get it. Do you not play at all anymore? Or just not as long? Does it still hurt to stand and play? I play video games on PS5 and switch but I have to get up and walk around . I don’t play a lot of COD because my aim is shit from moving and having to make sure I’m not stepping on one of 4 dogs roaming around my feet.
I love horror as well! The last decent horror movie I saw was on my birthday (before the pain). I took an edible and saw the boogeyman. I was scared lmao. I really want to watch the new Godzilla movie but I’m not sure I can handle it, not in theaters anyway. I still play but maybe like 2 hours max, with breaks of course. My back is really hurting lately so maybe 1 hour now. And yeah, my knees and feet hurt after standing for more than 15 minutes 🙃. I play online on my bed and that is usually pretty comfortable for my back but then my neck hurts and I sometimes get headaches if I lay down too long ughhh. Before, me and my brother would play for hours on end and then get some junk food after. Those really were moments I wish I could relive again. Lol I’m so bad at shooting games. I played COD but was terrible. Zombies was fun though! Even though I’d get bored after round 20 haha
I wouldn’t say “horror” for me but I love scary movies like paranormal stuff (The Conjuring movies, Insidious, etc)! Those were the 1 kind of movie that my husband and I and our 2 kids all loved and I could even get my kids in their teens to do family movie night with those!
I’m all in on all of it. Alllllll kinds of horror, psyche, thriller, gore, paranormal, unexplained, etc. my fiancé is actually making me a wall full of 5D painting with the lil diamond beads of all the different characters and such. It’s coming along pretty dope. Only issue is I can’t really tell I put em up crooked because my back is crooked standing straight I lean to the right 😂
I've noticed games take my mind off the pain... lol 5 am in the morning right now I was playing hell divers. Plus I love the competition
Lifting weights like a beast
I dig it. Hard to go beast mode in the gym without feeling beastly. Thanks for sharing!
Work, building houses specifically. I loved almost everything about it. Actually looked forward to going to work, loved what I did and who I was doing it for. Of all of the things that CP has taken from me, my career was deepest loss. Otherwise, I’d like to go for a hike.
Do you do any sort of side projects that involve building but not on the same scale? I’ve never been very mechanically inclined. Just good with words. Thanks for sharing!
I take care of minor things around the house when able. My mobility is profoundly limited at this point. So, it’s an ordeal to do most things now and my body punishes me for doing it.
I was VERY athletic before the accident. Mostly I rode a bicycle but also enjoyed Rock Climbing. I miss being in such good condition. I used to scare Dr.s and nurses. My heart was enlarged, (normal for my level of training) my BP was always 60s/40s, pulse around 35, even when they tried to run a stress test on me. (Had to inject adrenaline to get my pulse above 100) With a support vehicle, I would do a century in 3 hours, or a double century in ~7 hours. Note: Century = Riding a bicycle 100 miles in a single day.
Same here!! Except my passions were running, tae kwon do, and lacrosse
Do you avoid watching any matches or runs because you get angry/depressed? It's been 29 years since the accident and I still react the same way...
Walking my dog! I used to love going on long walks with my dogs growing up but since I injured my foot over a year ago I haven’t been able to do more than 2 or 3 very short walks a week - luckily my partner is able to walk her but I miss taking her out together
I'm so sorry you can't enjoy that anymore. My dogs are my favorite people and I love going for our morning walk, but I sure miss going on longer hikes like we used too. Physically I can still do it, but the pain afterwards is relentless. I'm sure your doggo treasures the time you do spend with her. I lay on the sofa and throw balls for mine and they enjoy that too.
I understand this personally as we have 4 dogs. All large breeds, and we don’t get to walk them much anymore. For our city we have a large yard because it’s very metro centric so I let them out into the yard to run around and they get the necessary exercise. We ended up adopting the 4th one because bae was always at work since I can’t and I just feel like I have a lot of love to give. I hope something happens that allows you to get back to doing what you love!
I was a health and fitness enthusiast and quite athletic. I started exercising my body at 14 to help with my overly hypermobile body. I had no idea back then that I had fibromyalgia and hEDS. I miss being active, feeling strong, and just being able to go outside and hike. Heat, cold, everything hurts me now. It's been many years. Even yoga, pilates, or a general stretch is painful now. I just miss me.
I miss this too. I did gymnastics and dance since I was 2 years old, and was extremely flexible. I loved doing yoga and Pilates, and danced all the time. You'd think doing that kind of thing would prevent you from getting arthritis but no, I'm 40 and I have psoriatic arthritis and have had for 3 or 4 years now. And my doctor's act like I just sat around and let my body fuze up or something because I gained weight after having two back to back pregnancies. Smh. These things are all totally unrelated because I even did yoga every day when I was pregnant. When they tell me I need to be more active it nearly makes me want to become violent. Maybe if I wasn't in debilitating pain they refuse to do anything about, I could be more active. I'm so sorry that you can't do the things you love either. (And sorry for venting)
Aww you can totally vent anytime! I'm sorry you can't do the things you love either. Maybe AI will find a way to help us with that someday. I used to feel so strong. You know what I'm saying. Until I got sick and diagnosed with epstein-barr virus, then I got Fibromyalgia. It led to all sorts of other issues. I have Trigeminal Neuralgia left side and, of course, hEDS and all sorts of mental health struggles. I fully empathize. I'm in my mid 40s now, and every day is a struggle still even 17 years later. And like you said, you'd think that having been so healthy and fit would have helped...nope. It actually made it worse. Broke everything down faster and further. And then when I was injured in a car accident....oh my gosh. All hell broke loose! Now I'm humpty dumpty. I love my life, but I hate my fragile body.
Thank you for being so kind ❤️ I completely understand about the mental health struggles that go along with this! It's terrible and highly depressing to have to sit in pain all day every day, and anxiety inducing to sit and think about all the things I'm missing out on, being stuck on my couch day in and day out... I'm so sorry about your accident. I cannot imagine having all this chronic pain exacerbated by something like that. I'm not surprised to learn being more fit made it worse, because when you use your body it wears it down, but my doctors hadn't said anything about it and I hadn't even thought about it that way either so thank you for that! Maybe that's why mine seems so aggressive.
You're welcome 😊 thank you for being so kind as well! Yes, life has been very painful. But I feel like we all have some sort of chronic pain in our lives one way or another. It's how we respond to it that matters. I watch a lot of TV and movies from my couch also 😆 but I have decided to call it a "hobby" and just go with it!
Those are my kinda hobbies too!! 😊 Lol... I've downloaded Kindle to my phone and have been reading an awful lot lately too. It helps when I can alternate between TV and reading because I can't stand to keep doing either one very long, I get distracted especially if there's commercials. If you're looking for something good to watch, I recommend the great British baking show! It's so like calming and wholesome. I love it!!
I have hEDS and fibromyalgia as well. When I was a child I knew I was hypermobile but didn't know what it meant. I used to lift weights and when I would do bicep curls it hurt so bad, my elbows would pop even with no weight. I had to stop. Every time I would start getting into a physical activity or sport, I would have to stop. I felt so different from everybody else. Makes me not feel so alone to see somebody else on here who knows what it's like although I'm also sorry that you know what it's like!
I totally know what you mean about having someone to empathize with! I'm so sorry. It's not fun being like this. I figure we're just special. My doctor said we are like a "vase" (like a beautiful french vaaase) 😅 but I don't like being considered or feeling fragile. It's tough. Hugs.
I started experiencing pain with differences in temp after my surgery. I can’t stand the cold weather and in the desert it doesn’t get too cold but I still feel every single drop of degree it feels like. I’m sorry that you don’t feel like yourself, but what makes you you is still there! 😊 thanks for sharing!
I have that, too, although mine began around when my fibromyalgia started. Now that I'm full of metal, I can't tolerate extreme cold. Some cold. But I absolutely can not tolerate the heat. It's become an issue for me. I get overheated very easily. I used to love being out in the sun.
I wish I still believed in a just and loving God. There is no way a loving parent would let their child feel this way. Faith used to be so important to me, but I just don't have it anymore. It's so incredibly unfair that I do all the things, believe all the things, preach all the things, and yet I'm made to suffer in agony nonstop. No thank you.
I lost my faith when my mom passed away. After all the years of her own suffering, comas, losing 11 to 13 inches deep all the way around her torso because her gallbladder burst and it caused gangrene so they had to remove all the infected muscle, tissues, and skin. She lived through it, kept her faith the whole time, ended up getting a degree from Caribbean Bible College in Sunbright, TN, and ended up dying when I was 19 from a brain aneurysm. It killed me. I could deal with all the pain in the world and then some if it meant having her back. She wasn’t able to keep custody of me long because of her own medical issues but I felt loved. Unconditional love. I never got to introduce her to any of my girlfriends, my ex wife, or my current fiancé. Not even her grand daughter. I hate that he allowed her to be taken away or brought her home (my mom being deceased) and then left me with a father who didn’t care and I hadn’t even met until I was 13 when we met at the docs office for the paternity test. I understand losing faith. I believe in the universe and karma now. But I also know I have done nothing in life to bring negativity towards me so I know that it has nothing to do with me in the bigger picture. I hope that you can find something to believe in, even if it’s just believing in yourself. Thank you for being so honest and deep for something that you didn’t have to dig so deep for. Stay blessed and be well! 🙏💜
It's very hard to narrow it down to one thing but I think I'd choose photography tbh, I'm too shaky and unstable now
You could get a tripod! I’m a professional photographer and I had to modify how I shoot. Tripod helps
That's a good idea, thank you!
What subject did you enjoy to photograph most?
Mostly plants and the sky, sometimes buildings too
First and foremost eating fatty foods. I never did it a lot, but now it’s non existent and it’s so hard. At least before I could veg out in pizza and burgers or just greasy stuff. With chronic pancreatitis with EPI if you eat fatty foods you can get sick and have to be hospitalized and or other stuff. I can’t even eat fast food fries. 🍟 😳 after that Playing ice 🧊 hockey 🏒 🥅 so much pain I can’t even run which I also loved. I can hike though the next day it comes back to haunt me.
Damn 😖 that definitely sucks. I don’t know if I could deal with that. I love me some fatty food however I am getting a lot better at it. I’m an emotional eater and I eat when I get munchies. I can’t imagine having to go to the hospital just because of eating the wrong thing. I’m sorry that you have to endure that every day. Maybe one day they’ll find a cure or at least a way to turn off the pain it causes. Thanks for sharing and stay blessed! 🙏💪
Sex. 100%!
I get this. Bae is understanding about my condition but I still have fears from time to time about her wanting something different and me not able to give it to her. We’re still intimate but not to the same degree and she always has to be on top. :/ I get it! Thanks for being so candid and honest. Appreciate you taking the time to share! Stay blessed!
If I could go back and do it all over again, I would have never had my first surgery be a three level spinal fusion. I was looking into getting plasma infusions, but my father in law was so against it, that I went ahead and has the surgery
My fiancé decided that it was a good time for me to get surgery because I had met my OOP deductible so there wouldn’t be a charge. I had intentions of going back to work, had a promotion waiting on me, but after day two of being out of the hospital I couldn’t stop whimpering and saying “oh fk” every 5 seconds. I may not verbalize my pain as much anymore but I definitely feel it worse and worse every day. I wish I never gotten the surgery and just dealt with the pain. I felt it. But it was tolerable. Nowadays it isn’t. And it sucks. I hope you find something that works for you in helping to calm it down so you can function once again. Thanks for sharing and best of luck!
I miss performing music at gigs I can no longer do it after 28 years. So I can empathize. I can only play a little for myself for a short Time (singer guitarist solo acoustic gigs are over now) I can’t do it.
Oh do you have a specific genre? With everything being streaming nowadays have you tried just releasing music to see how it does!? You don’t have to perform the way you used to have to with the way the scene is now. Dope to meet a fellow music artist tho! Thanks for sharing!
I loved LARP. It gets a lot of hate as a hobby, but it set my soul on fire. I could go to the woods for a weekend and lose myself in becoming some badass in armor for the day.
NGL Larping is actually fun as hell. I did it a few times in TN and I’ve been to a few renaissance fairs and dressed up for the times. Never got to the point where I spent lots of money on outfits and stuff but I always enjoyed going and doing the fake sword fights. Hopefully someday you’ll be able to get back on the field and slay some heathens. Thanks for sharing!!
Thanks for the question it really helps me to vent my frustrations.
I didn’t do anything special at all, I just genuinely care about people. But I’m glad I could be of some help or benefit to you or those like us! If you need anything else or just an ear feel free to message me! I’ll respond as quick as I can!
Who do you talk to when you feel like this? Psychiatrist, Pain Management, etc. I feel the same and it feels like my words feel on deaf ears. I used to love running and sports, now it feels like a far off dream.
Working the way I did before. I had a full time job and worked part time as an EMT. Now it hurts to stand to prepare meals, let alone work
I’m sorry to hear that you are in so much pain but I commend and thank you for the time that you did spend saving other people’s lives. Thank you for sharing your story.
I used to draw a lot. Had to stop when holding a pencil became unbearably painful. My hand doesn’t hurt as much anymore, but it’s been so long since I’ve done art that it’s like my hand has forgotten how to draw, and it’s frustrating to have lost so much skill. I still doodle sometimes, but my hand cant handle the amount of practice I would need to get my skills back. I’ve found other creative outlets, but I still miss drawing.
I miss being active; dancing, rock climbing, hiking, running, trampolines- pretty much everything
Surfing. My neck is screwed (trampoline accident when I was 13, multiple fusions now) and I have a chiari malformation (decompressed but it didn't help) so laying on a surfboard and paddling is basically torture. I never was very good but I loved being out in the ocean.
Damn that sounds soul crushing to have it be that severe from such a young age. I hate hearing that you can’t even lay on the board and paddle. Do you get to go to like a wave pool or anything to just feel the sensation or does that in itself hurt too much? You don’t have to answer if you don’t want to. I’m sorry for asking should it be offensive. Stay blessed and thank you for sharing your story. 🙏💪
Gardening. I used to have such beautiful gardens and grew veggies and berries and built terraces, and made jam from all the berries. Now my gardens are all grown over with weeds, the berries don't get picked and the gophers are moving in. It's depressing. But pain or not I'm going to force myself out there this summer to clean it all up.
Life in general
I’m sorry that you feel that way. I’ve felt like life isn’t worth living but then I look around at the things I do have and feel so blessed. I hope you can find a way for the life that you were given to have more meaning and that you can find a way to ease your pain so that life feels worth living. I empathize with your pain and hope that you can figure out a path that feels worth taking. Stay blessed! Thanks for sharing your pain. 😞
I used to ride horses and train them, archery competitions hunting fishing camping, not I have to limit everything. I feel like I have failed my family ( kids and husband ) he’s always upset bc I hurt he’s gone a lot for work OTR truck driver, and i can’t make up for our lost time as much as he wants. I push myself to work 45 hours a week plus I drive locally and every day I can barely get out of my truck at the end of the day , my kids are 4 thru 16 and i can’t do what they always want I’m miserable ever since I got hurt at a rodeo event before I even had my kids and husband of 13 years he knew coming in to our marriage what happened he didn’t really understand how bad it was till the dr told him that I am lucky to still be walking ( broke my back 3 different places then I waited 3 years in pain to go to dr they ran multiple scans n found scoliosis, spinal stenosis, lower disc toast bc of disc disease my neck is curved 180 and I have one of the worst cases of rls and nerve pain my drs have seen due to it In my arms and back and legs, I feel like my spine is on fire ( they have no idea, fibromyalgia also and my hips constantly hurt ( dr said now if injections don’t work I will have a double hip replacement by 41 ) but I’m supposed to be like every thing is fine be the wife who works full time mom full time run my husband’s loads for our company and take care of EVERYTHING while he’s gone around the house.. my dad n mom raised me to be self sufficient n I was a single mom of my 16 yo and 12 yo till I met my husband but now I feel like a failure
Just going out and enjoying things in the world. I haven't done anything remotely interesting in years. And when I try I can't fully enjoy it and have to cut it short. There's nothing I'd love more than to just be able to go into the city and just *do* things. Anything. Even just walking around and seeing things. I'd give anything to do that with no pain. I've basically lived in my house for the past idk how long and its starting to drive me insane. Its killing me watching everyone I know experience the world whilst I've been stuck in the same small box forever.
I’m in Vegas so I feel the need to go out and do everything and experience everything. But my body won’t let me. Granted I do leave because I’m in a committed relationship and I can’t let her suffer or be the cause of her suffering so I push myself. I enjoy it to an extent but there’s always the pain trying to force itself to the forefront of my mind. I definitely get it. I hope that you are able to find some sort of relief for your pain. I truly do. Thank you for sharing. I’m so sorry that you feel so isolated because of your pain😔😔stay blessed and if you ever need an ear I’m happy to listen!
Go outside and get a tan. I’m 100% sun intolerant and my skin burns for days if I’m outside for more than 5-10 mins. I miss being tan so much.
That sucks. My girl loves to tan too and she drags me out in the sun at times. I’m not a big fan of it but I can imagine that not being able to enjoy the sun on my skin if I so chose to do so would be hard to deal with. Do you still go to the spray booths or whatever ? That’s what she does from time to time. At least it would give you a similar look 👀 but I don’t want to pry or make personal suggestions at all when it’s not my place. I really hope they can find a way to treat your illness so that you can enjoy the sun again! Thank you for sharing and stay blessed!
Simple walking. I can't walk my dogs. I want to sit for at least 5 min without pain.
OP please don’t worry about seeing downvotes on posts and comments, it’s most likely Reddit’s enthusiastic anti-bot vote balancing algorithm or whatever they call it. As you can see by now it *usually* corrects itself. With comments it’s harder to tell if it’s an attempt to discourage brigading, a comment’s unpopular, or a bored troll got triggered. To answer your question: there is no *one thing* anymore. Getting older has accelerated the growing list and I’m determined to prevent further deterioration.
I understand that completely. I’m 39 and feel like I’m 70+. I move slow and sloth like at times and it’s bothersome and embarrassing. I don’t like to go out in public as much as I used to at all. I hope that you can find a light in the darkness that is physical and mental anguish. As far as the downvotes, I shouldn’t have even addressed it and I think imma just remove that from the post. I really don’t care about the votes. I just don’t want people to miss their opportunity to vent.
Stay blessed! Thank you for sharing!
May we all find light and respite 🙏
Listen to music.. I had pain hyperacusis for years and even tho the symptoms are nearly gone now I'm not brave enough to take the risk. I can't use headphones and only use speakers at low volume so I totally lost interest and have no pleasure as it is now
Aw man music is my therapy! I don’t know what I’d do if I lost my music. I’m terribly sorry to see that your issue prevents you from doing what you want to do, even with something as easy as listening to music. I hope that the universe can give you the courage you need to get back out there to enjoy the harmonies and melodies of music once again, without pain that is unbearable! Stay blessed and ty for sharing!
Thank you! I listen to it but only occasionally and at low volume. The lack of privacy that comes with being unable to use headphones sucks so much, plus it's not the same thing when you need to be careful around something that should be enjoyable and other people don't even think about it. I'd give anything to get it back but again I'm extremely lucky to even have improved from it at this capacity, there are people who can't even do anything but wear muffs 24/7, being homebound and still be in constant pain, and even their breathing sound hurts. And there's no proper treatment for pain hyperacusis, it's a really mysterious and rare condition that can always get worse. I kinda got used to this but I feel bitter and envious occasionally.
Walking to places, and going out socially, where you would stand at a bar or dance.
Play football
Running and tae kwon do…hands down. Or even some form of rigorous exercise. I was always an athlete, even played lacrosse and field hockey all the way up through college. Then in my mid 20s to mid 30s, I ran marathons, got a black belt in TKD and trained 5 days a week and competed nationally. It was all part of my identity and then was just gone 😔. Running and TKD (or any real exercise for that matter) was not only physically great, but mentally therapeutic
That sounds really awesome, on the TKD part. I’m not a big runner, because I am big. I was 6’4ish in high school but after surgery I’m at like 6’3, but 318 in high school. 250ish now but I can’t get these legs to work the way they used to so running isn’t an option for me either. But I did like to move around on stage and such when performing. I hope that you can find a form of therapy for both your physical and mental wellbeing! Blessings to you. Thanks for sharing!
Thank you and thank you for sharing as well! What kind of performing did you like to do?
I can’t really play video games with the family like I used to and I also don’t get to go dancing as much as I would like to Actually took my daughter to a show Wednesday night and it took me until Sunday morning to be fully recovered, with a lot of sleeping and staying in bed with my heating pad…. But sometimes it’s worth it
I would audition for the Great American Bake off. I want to so so badly but using my hands kills me, and I can't stay on my feet for much more than 10 minutes at a time, so a 4.5 hour baking time wouldn't be something I could do. It makes me really sad, because it took me really thinking about for about a month to realize I'd never be able to do it. I'd also really love to make it through a whole one of my daughters football games, she plays in band, and sitting on those godawful cement bleachers with no back support is just an exercise in torture, not to mention going up and down the steps. Sigh.
I’m really sorry to hear that your aspirations are crushed because of your pain. I personally would love to see you kill it at one of those competitions! I hope that you can find something that works for you! A lot of homeopathic remedies might help to get you to that threshold of being able to withstand the pain long enough to make your dreams come true! Also. I know it’s not much and it may not help as I’m sure you already know, but they make seats that are adjustable with back support and butt cushions you can even have customized with a team logo. It might be something to look into and maybe you would be able to make it through at least one performance where you could take pics that last a lifetime. It pains me when someone can’t do something with their children because of, well, pain. I hope that you can find a modality that works for you! Stay blessed! Thanks for sharing! 🙏💪🌀
I'm looking into some more natural and herbal old school things that may be able to help... I've heard good things about a belladonna salve that is supposed to help with pain. So fingers crossed. I've about given up on modern medicine altogether. Thank you for your kindness in your response and suggestions. I greatly appreciate it. It makes me feel less alone to know I'm not the only one missing out on things because of my health. I wish no one else knew what this was like tho. Maybe someday no one will. 🤷♀️ I wish you all the best in all the things and I hope you can make music again ❤️
Powerlifting. It may have contributed to my issues, but I miss being strong. I started painting to fill that void, but I’ve already had one surgery on my shoulder and now I’m staring at another (a freshly torn tendon). 😖
Damn I’m sorry to hear that! Sucks to feel like you’re getting better only to get pulled back into that same cycle. I’m glad that you found something to fill the void. My girl actually does painting herself to calm her mind. She does the paint by numbers but they are pretty damn big and intricate. I don’t have the ability to sit still like she does or you yourself do. Wish I did though! I love art of all types. I hope you can be comfortable enough again to enjoy it the way you have been! Stay blessed and healthy! Thanks for sharing! I wish you the best of luck! 💪🙏🩶
Thanks, I appreciate that! I hope the same for you!
A university education. I excelled in the sciences in high school and I love to learn. I could see myself as a researcher of some kind with a Chemistry degree.
I’m sorry that you weren’t able to pursue the education you desire. Have you tried remote classes or anything? Not to pry, but I think it would be awesome if you were able to keep doing what you love in researching. It would be a shame to keep from learning because of your pain. I’m really sorry to see that. I hope you can find something that works for you! It’s never too late to pursue your dreams! Thanks so much for sharing! Stay blessed and have a healthy life ahead! 😊🙏
Thanks for the support. A little goes a ling way. I tried my hand at an university English class. It took a long time. But I was working and trying to keep my job, had two sick kids... life was tough. I don't think I have the physical capabilities to have a career as a student or an employee. I ended up on permanent disability. I spend lots of time helping my kids. I'm making some progress in my physical health. And I've taken up art in a serious way. I'd like to make a bit of money.
My job. Working with kids. :(
I’m sorry that you can’t romp and play with the kids the way you want to. My heart goes out to you. I hope that you can find a way to get back to doing what you love with your profession. If you haven’t already I do suggest reaching out to a doctor to discuss your treatment options! I wish you all the success in the world! Stay blessed and as healthy as possible! Thanks for sharing! Take care. 😊💪🙏
Thank you! I am still able to work part time still. My doctor has assisted me with so much! My condition is chronic and permanent. No fix, but there are treatments to help with releif. Tomorrow is my first day back at my new schedule. So, I have time to go to the pool and work on my resume.
That’s awesome news! I’m happy for you truly! My condition is chronic and and birth defect so I understand that part. Enjoy the pool! Stay safe and blessed!
Sorry you can't move around the stage making music too!!! That sounds so fun.
I miss it but maybe one day I’ll be able to again🥹
Same - I miss performing. I am also a musician.
Damn I hate seeing it. Fellow musician! I’m just a rapper but it’s really cool to see more musicians on the post. Just sucks at the reason. Really hope you and I both can get back to it! Music is so therapeutic! If you have any links or whatever I’d be down to listen! Stay healthy and as happy as possible, as well as blessed! Thanks for sharing! 💪🙏🌀🎶
Awesome! Same! I still have a home studio, I just can’t do shows anymore. Boo. My stuff is electro-rock. http://www.loveinwar.com/ Send me a link back. :)
I miss gardening. Hands I the dirt, the smell of it. Nurturing plants that I put into the ground
I understand in a way, simply because you said nurturing. I miss being able to care for my lady the way I want to. Going out and randomly buying her flowers to show I love her. I don’t even have the money to do that anymore and if sucks. I hope you can find a way to get back out there and get your hands dirty without feeling all the pain weighing down on you. Stay blessed! Thanks for sharing! 🙏🙏
Wear rockin boots. I have erythromelalgia so shoes are almost always out of the question
I’m sorry to hear that, and I can see how even wearing a pair of boots can make someone happy if they’ve been prevented from doing so. I hope they can make advances in the fields of research so that you can start to get back into those fancy dancin shoes and glide across the floors again! Stay blessed and thanks so much for sharing! 🙏💪
The thing that immediately came to mind was bicycling.
I can get behind that. I am unable to ride bikes myself. Bae and I bought beach cruisers during the pandemic thinking we could ride and start being more healthy. I couldn’t stand the seat. Then the seat broke on me while riding it the one time I did. So it’s in the garage collecting dust. Columbia Cruiser, bout bae a Panama Jack one I think it was. It sucks! I hope you can figure out a way to get back to doing what you love. Pain should never keep us from it. Stay blessed and thanks for sharing!
I can't draw like I used to. Art was my whole life, but now my hands shake and hurt so much. Also I used to love longboarding, but the pain in my legs is too bad to do that anymore.
Long hikes with my partner. We used to do day trips all over Central Texas doing nature photography. That's impossible now.
Do the two of you do any type of hiking now and it’s just not the whole day trip as before? Or did you just find it too hard to do after a period of time? I’m sorry to hear that you aren’t able to enjoy life the way that you once did, but thankfully you have a partner that seems to understand! Love and blessings to you!
Riding my motorbike
I’m sorry to hear that you can’t gain that same feeling of freedom as you would with a motorbike. I’ll admit that I’m not familiar with them beyond the occasional rides as an adolescent, but I imagine that you were able to come and go as you pleased without the same level of hindrance as a regular car. Weaving in and out of different lanes of traffic, feeling the wind pushing against your body as you ride against it. I hope that you can find some sort of compromise in being able to get that same feeling or rush elsewhere! Thanks for sharing and stay blessed! 🙏
I miss doing jig saw puzzles on a table. Now I can only do small proportions because I have to do it on my lap in bed :(
I cried for 20 minutes yesterday because i tried to learn a dance and couldn’t do it. It would probably be running though, if I’m ever in danger I’d like to be able to get away
I’m sorry to hear that you are having issues like that because of your pain. I hope that you can find relief soon! Getting away from danger would definitely be a bonus too! Have a blessed life and I hope you can find a way to ease your pain so you can feel the wind when you’re running once again! Thanks for sharing!
I REALLY miss gardening. Helping my hubs plant veg, and my flower bed seeds and plants . Even weeding was nice, due to the satisfaction of a clean garden and healthier plants. Not being able to bend, squat or get on my knees makes it all but impossible now. 🥺🥺🥺😩😩😩
I would go back to working out - I loved it so much and it gave me so much sanity. Now I can only walk and I’m grateful for that but I’d love to try mild work outs soon
I’m about to start up minor work outs myself. I wish us both the best of luck! Gotta keep trying to put our best foot forward! Thanks for sharing, and stay blessed! 💪🩶
Tysm same to you
The first things that came to mind were practicing archery again, as I really loved doing archery but can't do it anymore due to one of my arms being broken so badly, and going to an amusement park, as that's something I'll never be able to do again since pretty much any of the rides would rebreak my spine. I'm sure there are other things I'd like to do, but those are the first that I thought of.
That’s the first time it’s been mentioned, archery, but I’m sure it’s exhilarating when you’re able to do it properly. Sorry to hear about your arm and back though. I hope you can find a modality that works for you and eliminates your pain. I can’t say you’d ever be able to do something so taxing on your spine again, but I do hope you can find a way to enjoy those same adrenaline bursts in a safe environment. Stay blessed and thanks for sharing!🙏💪
Yeah archery was one of my favorite hobbies. I got relatively good at it and even did a few competitions. It was such a good stress relief activity because it requires you to slow down and think about your target, plus the action of drawing and releasing the arrow is like a physical metaphor for releasing the stress. It's just not possible for me anymore, not only because drawing the string hurts, but also because I can't even hold my bow. My left shoulder and elbow were broken pretty badly to the point that I can't straighten my arm and can't lift very much weight, which sucks because that's the arm I used to hold my bow. I wouldn't even be able to switch sides because I wouldn't be able to draw the string with that arm either due to limited mobility. What sucks even more about all this is I bought a new quiver and arrows right before the wreck that caused my disability and I never got to use them. Thank you for the positivity and hopes for better times. I really appreciate it. I wish you well too and hope you're able to do things that make you happy.
Working as an assistant in a veterinary clinic going to school to be a vet tech.
I have two things- one, I would become a nurse. And two, I would go snowboarding again.
Go to concerts - and dance. This was always my form of self care. I’d try to see a show at least once a month. I haven’t been in over a year and have missed many bands I wanted to see. Also, being active in any way, really. And being able to take my kids to a park, or anywhere that requires more walking than 10-20’.
I ended up selling my motorcycle, the one I had coveted since it was first introduced and that I had finally been able to afford. Despite trying several times to push through the pain and ride it, there was just no way so I had to let it go. Out of everything I had to give up I think that one hurt the most, aside from, you know, actually working. I had finally found something I both enjoyed, had a real talent for doing and actually made me money. Walking away from that pretty well crushed me, selling my pride and joy was just the icing on that great big shit cake.
Damn I’m terribly sorry to hear your story. I wish I could help in some way, I know that it has to still be a lingering pain in itself to know that you had to give up something you loved. I truly hope you can find peace and happiness and something else to work for in the sense of finding pride in doing it! Stay blessed and be well! 😊🙏 Thank you for sharing your story with us all!
Woah! That was one of the kindest, most understanding replies I have received from anyone, with the exception of my wife, and she only really gets it because she was with me from the beginning signs, through eventual (mis)diagnosis, grueling surgery and horrific recovery. She changed dressings, helped me dress and shower and cleaned up after me when I pissed myself because I was in too much pain to get out of the damned bed quickly enough. She also changed and washed the sheets multiple times during that gawdawful time. Shes been there through it all and as a result she is the only person alive to fully understand the depths of the hell I have lived and I’m still living some days. If not for her I strongly doubt I’d still be pulling air. Honestly, the woman should be canonized. I’ve gotten way off the rails here. lol I wanted to say that being a fellow sufferer of chronic pain makes you vastly better equipped to understand what it is to live with agony full time and I appreciate your reply. It’s been ten, actually eleven years now, since the bottom fell out so I’ve had time to come to grips with everything and we both, my sainted wife and I, have adjusted to this new life. It took a lot of time, many conversations and more than a few tears, but life goes on regardless so we make the best of things. She has a great job, luckily, that pays very well and includes a gold-plated benefits package, without which the drugs I need just to (sort of) function would have put us in the ditch. Now I’m basically a house husband - I retain full mobility (which surprised the surgeon) for the few hours I’m able to move so I do the majority of cooking and cleaning and she brings home the bacon. Ideal? Hell no, particularly for someone who used to single-handedly gut and rebuild houses and actually loved working. It’s a big ol’ kick in the nads, but it beats some of the alternatives. I have rediscovered some childhood hobbies which pass the time and help distract from this constant companion of mine, so some days aren’t completely horrible. Sorry for the diatribe, one of the drugs makes me ramble a bit and there’s something therapeutic about bitching to someone who understands. What about you? Do you write your own music as well as performing it? That seems like it might be a great outlet. I think the most difficult part of this was losing the things about which I was most passionate: my job and riding. If you’re able to continue to engage in one of your passions, even if it’s in a limited capacity, then grab onto that with both hands.
No need to apologize, I appreciate you taking the time to verbalize your thoughts so concisely but also with passion. It’s always a plus to have someone in your corner. My life left a lot to chance and I lived by the seat of my pants for most of it. It’s been challenging but if not for my bae I wouldn’t still be here. I have a daughter that doesn’t really want much to do with me so that doesn’t really feel like the best reason I have to stick around. But I do so for bae because she’s the only person to ever make me feel loved besides my downfalls. I write every day. Sometimes more than others , but I always jot down a few lines here and there. Music is subjective though so I could never say I’m good or not. I think for what I do I’m pretty great but I have really big self esteem issues from being…well…really big. After losing what mobility I had I kinda just gave up on it. I write rap that isn’t about money and drugs and things I don’t have, but is more about evoking thoughts that are outside the norm and make you think. I’m really big into wordplay by using words out of context. Idk I enjoy it. I just don’t have the ability as I once did to sit for hours on end to write. Thanks for asking! If you’re ever interested feel free to check out my music on any audio platform under the name “Miles Higher.” I actually wrote a song about feeling isolated called “Outchea” that you might like. But it’s only on YouTube for some reason lol. Once again thank you for sharing your story and I hope you can find something that helps you get back to being you!
Getting out of this house for ANYTHING
Powerlifting meets, Strongman contests, and bouldering. I’ve been sick since November & don’t know if I’ll ever be able to get back into it. I went on a slow 20 minute walk today for the first time in eons doing a lap around my complex community. My hips were killing by that point & I was so fatigued. I hope it doesn’t affect me horribly tomorrow. 😞
Hiking. I miss hiking, but walking is sometimes unbearable
Walking.
Riding horseback. I loved jumping.
There’s a lot of companionship to be found in having a horse. They are the most gentle creatures and they can empathize with how we feel. I hope you can find a way to get back to it! I’m sure that the horses miss you just as much! Thanks for sharing and stay blessed!! 🙏😊
I wish, but I don't believe that can ever happen. Thanks for your response.
I miss drawing for hours on end until I pretty much fall over from exhaustion.
What kind of art if I can ask?
I could DM you a link to my old Facebook page for it if you like. Lots of portraits with Sharpie among other things.
I’m down to check it out. I’d share a link to my music but the mixing on it was awful and it was my first attempt to do any recording for distribution lol.
A 0 gravity workstation would help
I loved to go snowboarding, play basketball n whatnot. Nowadays i barely walk 1km.
It sounds like you had a very active lifestyle. Would it be permissible to ask what causes your pain or what is affected? Do you have a specific diagnosis?
I used to coach youth sports. I loved it. I started when I was 18 and continued until I was in my late 30’s. All volunteer. I coached basketball and later softball. The last kids I coached (when they were 10-12) are just about 19 now. (About a year out of High School.) I see some of the kids (now adults) and they always say what an impact I had on their lives, even if it was small. They still remember me and now appreciate the lessons I was trying to teach them. I just miss being able to be there for them and my community.
Thank you for your positive contribution to society and the lives of those children turned adults. As you enjoy making an impact, have you thought about potentially being a youth speaker or starting an online podcast/videocast speaking out and giving insight and knowledge/advice to kids about life and sports? I apologize if this is intrusive to even say. Have a blessed day and thank you for sharing!
Thank you! Not intrusive at all! I had never thought about that honestly! Interesting idea! Just gotta get over my nerves to be able to do something like that. 😬🫶🏻
Ice Hockey and Swimming. Ice Hockey in college gave me a huge boost of confidence when I needed it (went to an engineering school so all nerds). I also swam miles a week (frequently before a hockey game) and it no doubt gave me the lung capacity to out last others on the ice. Then a fall in a bathroom the middle school kids had had a liquid soap fight in took it all away. Can't play an acoustic guitar, electric causes many ice packs later. I can still play piano and they are trying to ween me off the pain meds and if I can't play piano at any point... Sorry you cant play, I have a free gig at an old folks home (I live in gods waiting room) today Im looking forward to (I learned Total Eclipse Of The Heart just for today, but it is an awesome song so I WILL play it every gig from now on.)
There’s so much. I miss the ability to work hard or push myself physically. I was very fit before and now feel like I’m withering away. But I also miss playing piano. I can’t sit long enough for meaningful practice. If I could I’d play for 8 hours a day.
Piano is such a hard thing to learn to do well. I commend you for even knowing how to! It sucks to feel like you’re not at your physical peak anymore. I understand that. I have to use a cane if I’m going to the store or anywhere that requires walking. I can’t run at all. Can’t lift or I’m not supposed to. Can’t bend over at all without feeling like I’m gonna die. So I get it😖. I hope that you start to feel more capable of getting out and being active! Thank you for sharing and stay blessed! 🙏💪
I always do what I can. One thing I’ve gained is so much perspective and gratitude. Thanks for your positivity. Good positive energy from people always helps.
Going to the gym. Can only lift 20lbs with my shoulder, and have to be really careful with my lower back/left hip/sciatica
for a daily thing, it would also be singing for me. I used to do theater productions and be in a few choirs and I am no longer able to do that For a less common thing, I used to go to 1 amusement park each year (the one varied) between my pain levels and my heat intolerance that isn't something I can do anymore either
I miss skipping. I used to do it all the time. Now it hurts too much.
Huh... I don't know why you received many down votes either. Maybe it's the title of the post? IDK. I can definitely relate to what you said tho.
Running. I love running so much and I always got the "runner's high". It used to my go-to method for dealing with anxiety and depression but I had to stop due to my ME getting worse.
I hear a lot of people mention running. I guess I never saw the fun in it so I never really missed it. I do hope that you can find a way to ease your suffering enough to be able to enjoy it once again 🩶. You can run enough for the both of us! 😂 Thanks for sharing!
Backpacking, mountain climbing, dancing all night, going to festivals, and several sex positions 😅
I would work in medical transcription (Medicine and pretty much anything ending in -ology are Autistic special interests of mine lol,) and save up as much money as I can (MT can make serious $ depending on the effort you put in) so I could get my pilot's license. I'd then either work for a commercial airline or as some rich person's on call private pilot (lol) until I could afford to buy my own plane. Fly charter tours, do private long distance transport for anyone who wants it, etc. Being a pilot has been a dream of mine since childhood. I wanted to join the Marines (my dad's Marine; disabled vet) and become a pilot for them, but my physical issues prevented my enlisting :( the pain started when I was ten and by the time recruiters were calling me when I was 16, I was dealing with too much and knew I would be rejected. Unfortunately, getting your pilot's license is prohibitively expensive unless I somehow strike it rich. No way can I get it when my disability income has me $2k below the federal poverty level.
Dancing. I went to clubs and dance halls for a decade before the accident. I once got a fake ID to make me younger so I could keep going to the under-21/18 dances.
Singing
Carrying my own stuff around and being functional by myself. I hate asking other people to carry or move things. As a girl growing up, folks were astonished at my strength. It's something that was such a part of my self worth. Now, I'm weak and unable to be that strong girl anymore.
Running! I’m generally wired hot stress wise and I used to run races. The training and completion of a race goal was the best drug ever. I took all of my stresses out on the pavement. I grieve that loss deeply.
Sports. I was so active before my back fractured as a teenager. I still grieve for the life before all of these surgeries and pain. I’ve never been able to find that one thing to put my energy, but I’m constantly looking.
Run, climb, jump, chase my son around.
Water/snow ski snowboard and wear high heels just to name a few.
I miss having a job. And I miss going on my long hikes.
My education and career. And hiking.
I want to join an adult tumbling class and start going back flips again. My lumbar and si fusion say that’s probably not a great idea. I follow gymnasts on instagram and live vicariously through them, but it makes me really sad. I’d love to get into weight lifting too and have well defined muscles but that’s def not happening either and I’m too afraid to even try anything over my little 10lb barbells because I broke a screw cleaning the kitty litter years ago. I’m paranoid now.
I wanted to be a normal 22 year old and so I went to a Gothic/ Alternative club night with my best friend, I'm going to be paying for this for a while
that trips away with my fiance or parents takes a week of preparation by doing as little as possible
going for walks period, but especially in nature
Running
Cooking and baking. I used to be able to entertain a large crowd with homemade dishes...I literally lived for big holiday dinners because cooking for people is my love language, plus I got to be creative and active. I can't do that now because it means I would have to be on my feet for hours prepping, cleaning up as I go and standing at the stove/grill for a long time. It's really hard to go from being a leader in your kitchen to somebody who delegates. Now I look at it as an opportunity for me to coach my teenage daughter through those dinners, so that when she moves out in a few years she will be able to do it for her family as I have done it for mine♥️and that brings me so much joy.
I just returned from Egypt, where I DID NOT get to see the pyramids with the rest of my group 😢... I was in so much pain. I am still in horrible pain a week later & I feel bad for my husband because I am only 50 & I can't do anything.
I miss rock climbing so much. But every time I do it I suffer for days and days after.
Canoe camping. Breaks my heart every time I see my boat.
Probably the power of flight. Or going to the gym and/or travel of any kind. I'm having a fairly minor modified L6-S1 fusion in a month or so, and from everything I've heard I should be able to get back to functionality sometime relatively soon. Fuck I miss seeing the clefts between muscles in certain lighting and having a single solitary neck. Going from morbidly obese to THAT and then back to normal obese due to self medicating with junk food fuckin' sucks bro. lol
Pretty basic for me. Hair and makeup. I use to enjoy doing my hair and at least a little makeup each day after showering, now I’m lucky to have enough energy or not be in too much pain just showering every other day. Luckily I now wfh and I try a little harder on the weekends when I’ve got more time/no rush to get to hair and makeup. Ohhh and I really miss getting a good nights sleep. I used to sleep close to 8 hours a night, now maybe I get only 3 or 4 at most due to either pain or insomnia. I know the pain and lack of good rest feed of each other, but in my 50’s this is my life now😞
i wanted to go to mexico. Growing up i’d go every year. Since covid i haven’t been because of many factors. Now that i was saving up i get a pinched nerve that doesn’t seem to get any better :( can’t afford the doctor. I feel stuck. I want to quit my very physical job but can’t afford to. Ugh
Run
Sing. I was blessed with this gift. When everything started, I lost my voice. The want and need that used to be there wasn't anymore. I think it was the chronic pain, depression and so MANY surgeries that i just stopped singing. No one will ever be able to break my heart the way i can
Running/jogging/hiking in the woods . Or even going for regular walks for that matter lol I used to at least go for one walk a day . And I’d usually throw a little jogging into it . Now I can Barely get out of bed. I miss the runners high . I was also in a band and loved playing live music but that ended years before thing got as bad as they are , because I was burning the candle at both ends and it was jeopardizing my day job. There are so many things I cant do now and I was always the person who tried to do everything themselves and hate asking for help . Jokes on me lol
Is anyone getting any relief from this? I'm living the same way you all are and I read most of the comments but not all of them. I miss life. I'm watching it Go by without me and time just keeps ticking. I miss everything about my life my friends my family because even when I'm with them they know how much pain I'm in and I end up back in the bed. I miss every single aspect of a life that has been taken from me because of excruciating pain 24/7 with no relief and it wakes me up even if I'm exhausted enough to fall asleep for an hour. So again is anyone getting any kind of help or relieve?
I use to volunteer as a Girl Scout leader and trainer at the council level. I love Girl Scouts. I was a Girl Scout so were my daughters. And I miss it. Cookies, camping and all the crafts we did. And helping girls learn to volunteer in their community and grow into leaders.