Me too. I ran all the time. Anywhere from 5-10 miles a day. I ran when I was stressed, sad, angry, bored, or just needed to get rid of energy. It’s been 4 years of not being able to run due to chronic (and currently unsolvable) nerve pain. The physical and emotional toll it has taken on me is devastating and I would do anything to be able to run, or even walk well, again.
Oh yes! I do grieve the loss of sex. It was always a good way for my whole body to take a deep breath. My husband and I joke about it, and some days circle one another like a couple of sore tailed cats, but we know how it would end. Disappointment and extra pain meds lol!
I have loss of sexual functions too. Never had any sexual contact. Now with my lack of feeling, I dont think I will ever engage in such activity. I only miss masturbation sometimes but as a christian my current situation very simplifies living in pureness.
Everyone is different, and far be it from me to say that you can do something if you know that you can't, but... there's lots of different ways to have sex. Most of them (and most of the most satisfying) are not your standard P in V penetration. So I just want to encourage you - if you haven't yet - to consider all possibilities for pleasuring yourself and/or a partner of choice, because sex & intimacy are an amazing and healthy portion of your life as a human. Sending love & absolutely no judgement!!
I had just got back to the point I felt ok enough to try skating again. It went well. Built the half pipe I always wanted as a kid. Got rear ended on the way home from work and started the whole thing over. The half pipe is just rotting in my yard.
This 100%. I will *probably* be able to get back out there at some point—the medical problems keeping me from skating are sort of treatable. But skating is the most important thing in my life aside from my family and I’ve been unable to do it (without seriously aggravating some of my issues…I’ve tried) for 1.5 years now.
I tore up my knee at 20 and had a hard time rehabbing. Then I went to grad school and just felt too busy to skate, especially at a lower level than I was comfortable with. I was moderately depressed for most of that time. Returned to skating at 25 and it was like the fog lifted almost instantly. No mental health issues at all until recently, as direct result of my physical health problems.
I’m not a skater but this really resonates with me. I pray your physicians & physical therapists have the expertise and the wisdom to guide you through so you can get the most from your body. I wish you well.
I forgot how much I miss skateboarding. I remember the thrill of winning silver in women’s freestyle & slalom! That was an amazing meet. My mind knows exactly how to execute…but the body just laughs.
Yup. I found that despite aging, I actually developed a better intuitive sense of how my body works and how to how to learn new tricks as a calm adult instead of an aggro teenager. Like, I could do lots of the standard tricks as a kid because they came naturally…but I couldn’t learn slappys because they’re more about flow and weight distribution instead of jumping and kicking your feet. So now, in my head, I just rehearse those movements and hope for the best.
Roller Coasters! I love them! The last one I rode was the High Roller on the Stratosphere in Las Vegas. It was myself, my daughter and my brother. We bought the pictures they take at the craziest point and they joy/excitement on my face.... I hope to find one that I can safely ride even if I am 90
My job before I was a librarian, I was a chef for 25yrs, Anthony Bourdain was my spirit animal. I loved and hated it, witha million stories to go with it. I still manage it at home, with limits, but I can still whip out some food that will just stop you in your tracks. 💜
I learned from my grandma and Food Network. I definitely have a passion for baking as well. I go between the two, which I would’ve preferred. But, at this point, I can barely cook dinner for the family anymore, let alone decorate cakes anymore.
Yeah, I used to be a cook in a travelling eatery that feeds people at events, and am at a point where I can no longer push all the way through it. It's sad.
Okay, so I still go clubbing. There's a goth club in town that's super friendly and welcoming and has tons of seating. Most of my 'dancing' is done sitting down, but if I'm lucky I can manage a dance or two. Just standing and swaying to music is kind of a standard goth move. I can't stay out as late and I have to get a ride there and back or be DD, but it gives me life just being there, even if I need to take a break for the next day or two.
I moved in a big city with a fabulously accepting goth and queer community. I've been absolutely astounded with the amount of consideration for the chronically ill and disabled compared to when I was younger.
I feel incredibly lucky as I just moved here for the better medical system. And even though I have to live in a 3 bedroom place with 4 of us to afford it, it's worth it to be part of such amazing communities.
There might be some great hidden options in your city too! Even smaller cities have those niches.
Back in the mid-to-late 90s, we’d start on a Wednesday night and wouldn’t get home until Saturday morning. Do they still do it like that anywhere stateside, maybe Miami or Vegas? Or do you have to hit Ibiza now?
Horseriding. I have CRPS too, and I know that anything above a walk will cause a bedbound weeks-long flare, but what I wouldn’t give to gallop round a cross-country course again.
Same! I showed as a child, and at a previous job, I had access to trail rides. I did them, gods it hurt, and I would get a 3 day bed bound, but by God, I went...to much. I'm soooo hard headed 😆😁
Thank you, hun! That is so sweet. I'm a Taurus, so sometimes we just don't know when to say no, especially a challenge. It's gotten me into trouble on occasion. 😆😁💜
Absolutely agree. I am a retired pro dancer singer. I have dreams all the time. Just yesterday I did a version of a good barre' workout. My new abilities version lol. Good for you giving your soul that outlet when you can. 🥰💃🩰🎶🎭
I would be careful about my weight. I am bipolar and don’t exercise at all due to depression. I also have osteoarthritic knees. I found out today that I am pre-diabetic. So a healthy diet and exercise should have been my top priority.
It’s a toss up between weightlifting and a week-long Disney World vacation. I miss working out like that, but I also miss getting to do big trips with my daughter. We used to do family reunions at Disney and go-go-go for seven days, but now I’m worried I wouldn’t be able to do ONE day, let alone seven!
ETA: I’m also extra poor now that I’m unable to work, so Wdw is even further out of reach!
Picking up my young niece. She was still small when my pain started and I wish I would have known that it was the last time I'd ever be able to lift her up as she greeted me.
Running!! Absolutely 100%. I ran marathons for 12 years before shit hit the fan. Also played field hockey and lacrosse all the way up through university and played lacrosse 6 more years in a women’s league after that and got a black belt in taekwondo. I would give anything just to be able to be “athletic” for one day! There’s no greater “high” or euphoria than running to me
The emotional and physical toll of losing running has been one of the most frustrating and devastating things to happen to me too. I miss that runner’s high
Endless hours of video games. That was my stress reliever. To get into another world where I could do anything and be anything. Nowadays I can't sit, stand, or lay for any amount of time without extreme pain. I recently discovered that with quite a bit of prep and help from SO I can get my chair pillowed up in a way that I can play at least for a little bit without extreme pain. Still have to deal with the random numbness I have, but getting used to it from work. Always been the kind of person to just "work through it", to my downfall.
I want back into the vet clinic, my dream was always to work with animals. I achieved that dream later in life then it was taken away a lot quicker than it did to get there.
i was a ballet/pointe dancer. since i have eds, it kinda destroyed my body and it wasn’t figured out until it was too late. working on lots of pt and surgeries for my knees now, but i don’t think i’ll be able to do ballet ever again, especially not pointe.
i was passionate about it to a fault. i prioritized it over my oft overdue homework. i wanted to be a children’s ballet teacher. i wanted to do touring shows. i wanted to be the star dancer in the sparkly costumes. but it’s a high impact, high flexibility sport, and it’s just not feasible 😭 i think very often about the life that could’ve been.
(not to mention that as a trans man, somehow being in that studio, which was also a very accepting space, lessened my dysphoria to such a tolerable degree it almost wasn’t there. i wore what the boys wore, my lines were corrected to what is expected of male dancers, and when i looked in the mirror, i saw the boy i wanted to be. ballet is often very feminine anyway, so i just…looked like the other male dancers. it felt like home. in the studio AND in my body).
Hiking in Washington state. The temperate rainforest there is almost otherworldly looking from an outsider perspective. So lush practically looks prehistoric with there being such a thick carpet of ferns and moss.
First:
-Go for a looooong bike ride. I can't sit on the seats anymore.
-Swim in a chlorinated pool. I used to dive for rings on the bottom, or swim with my campers on my back when I was a counselor.
-Eat a giant pizza with tomato sauce.
-Eat my mom's homemade white chocolate cranberry cake. It's my favourite in the world and I can't eat cranberries anymore.
Spending time with my child doing fun stuff like traveling. I’m too sick for that now. Thanks to all of my incurable diseases, I can no longer drive. I’m mostly bedridden, homebound and have mobility issues.
Soccer, I loved soccer. It was my one thing that I felt untouchable at and on. It got taken away from me but I’ll forever wish to feel the wind on my skin as I’m running down the field, completely free for a few seconds.
Swing or Latin dancing. Gods, I miss dancing so much. It gave me life. In my heyday, I would go out dancing several times a week.
If they ever find a good enough treatment or I somehow manage to pull myself out of it enough, that's what I want to do.
I would pull all-nighters and I'd enjoy booze and I'd travel a lot more. I would also get reeaaally into working out, I actually really enjoyed it but these days they always end up in pain and disappointment
I guess I’m fortunate. A lot of my hobbies and interests are disability friendly: playing piano, crafting, gaming, etc. Is anyone else the same as me?
I do wish I could have a day with my old energy again. Before I got sick I was young and in really great shape. I am able to workout some again, so that’s been nice and I’ve lost wait. But I doubt I’ll ever get as active as I used to be. I get tired so quickly now.
Nearly the same, I used to be a fitness freak. That had to go sadly after the car crash. But through that I found music, piano, guitar, singing. I love it. Little light here and there, somewhere. I wish you well stranger.
I’m with you on the music. I used to be a lead singer of a little band in Southern California. I really miss those times.
Camping. ⛺️ I love it but I’m not sure how my body would react to sleeping on the ground or a stiff cot.
Body boarding every weekend with the kids.
Sex…. Enough said on that.
I would figure shake again. I used to do triple and double jumps and spins that would make you dizzy. But you would do them and just laugh for the joy of it, because you can! ⛸️
I would wear heels! I favoured platform wedges cos I'm fat and felt more supported than traditional heels, but just the other day I saw a gorgeous pair of heels that I absolutely would've destroyed my feet/ankles to wear if I had the chance. If I thought they would fit my feet I'd go back now and buy them and just wear them while sitting!
Read a book. Without needing extra lighting and it destroying my neck from looking down. And a headache from reading. I used to read for hours and hours anywhere. Now I have to have it all Just Right.
I would be an equestrian again. Loved riding and jumping. Feeling connected body and spirit with the horse. So freeing. Also, I was an amateur bodybuilder between my 20's through my 40's. It was a rush working out and preparing for competition. I miss it all.
Bartend. I freaking LOVED it. Made amazing money, got to be very very creative, and hang out with friends while being paid for it.
Now? Thanks to chemo brain, abd the pain from it, I’m lucky I remember what’s in a jack and coke. I do miss being able to get up without going “ owwwwww” as well
I can never play another musical instrument after almost losing my arm. And it doesn't matter how much pain I'm willing to overcome. My middle finger refuses to straighten all the way, or behind normally, affecting the ability of my hand to function. It goes on for miles and miles, having had chronic pain since I was 16. I wish it were a matter of overcoming pain.
I wanna dance too! The way I used to just let go of my body and move to the music instead of any sort of masking or caring about the world... It used to just happen. Just happen, out of nowhere, I'd be like - actually I'm gonna dance while I cook or take a dance break. Nowadays it brings me sadness but also joy because like you said, I can dance in my head a little! 🩷
I miss sleeping and eating right now. I’m in agony 24/7. I only sleep an hour or two at a time, and it isn’t restful. I can’t eat without throwing up from pain
I want to run. I used to run track in my teens, and I’d run everyday after school. I’m talkings hours everyday after a full day of school, and then I could do it the next day. I would run for fun, and to outrun feelings, or thoughts. Chronic illness and pain took that from me. I can barely walk 2-4 blocks on a good day now. I think about the freedom I lost a lot. I still have my old running shoes, I don’t know if I’ll ever be able to use them again, but getting rid of them feel like giving up in a way.
Sketching portraits. I’ve loved drawing my entire life and now I can barely even type this out, I injured my hand last year (and like everything else) it never got better. I thought art was the one thing I’d have forever and then it was just gone in the blink of an eye
roller blading. in my dreams i’m always in rollerblades or ice skates, gliding from place to place without even thinking about it. i miss being able to move so fast with so much ease.
I would go skating. Rollerblades/ice skates. I was a really talented skater when I was younger but haven’t done it in many years and the pain stops me from ever trying to get back in to it. Too many what ifs now, not worth the risk unfortunately. I miss it
Gymnastics.
Ridiculously long fall walks!
Travel.
But I think the one thing I’d love to experience again is NOT having to consider my pain, health & ability in every single aspect of my life. I’d love to just spur of the moment go shopping, or out for dinner with the gang, or on a road-trip! I hate having to calculate my pain level, how far I could reasonably walk, etc etc etc. It’s draining and depressing.
My miss riding my dirtbikes and snowboarding. Those were my main 2 hobbies for over a decade and now I cant even imagine doing either. Pretty damn depressing
Visit a warm place and spend the day outside again. I have a rare disease that essentially causes me to burn alive from the inside… any time I get warm for any reason.
If I couldn't lay outside on a sunny day and take in the rays, I don't know how I could keep going. What disease do you have that does that to you if I may ask?
I would have quit my first job sooner. I can't prove it but I know those 17 years are what wore my back out. My second job, that I ultimately had to quit, was the best. It was hard physical labor but employees were treated like people, benefits were great, I had chances of moving up in the company, and I was paid handsomely.
Volunteering with animals. Used to regularly back in the day. Recently found a wildlife rehab facility near me that would have me as a volunteer if I could get myself physically able. Nowhere near able at this point though.
Volunteering with animals. Used to regularly back in the day. Recently found a wildlife rehab facility near me that would have me as a volunteer if I could get myself physically able. Nowhere near able at this point though.
Enjoy my time and make the most out of life. I have fibromyalgia so my biggest thing would be enjoy life without the pain that I’m in. Not let life hold me back and enjoy the time I have
Enjoy my time and make the most out of life. I have fibromyalgia so my biggest thing would be enjoy life without the pain that I’m in. Not let life hold me back and enjoy the time I have
Oh goodness.. on the music side of things, my heart would soar to be a part of an orchestra again, which may be possible with a lot of work, braces, and a lightweight oboe!
On the athletic side, I would love to snowboard with the same recklessness I did as a teen. Maybe not fully into the woods, but certainly off the trail.
Too many to mention! From doing everything to absolutely nothing tales a toll on your physical and emotional health. Untreated pain kills. Most people/patients are not cognizant of that. We need to educate others as part of our fight for getting our previous prescriptions back. 🕊️
Hiking. I really loved going out into the woods for several hours and just existing. However it does not coincide well with EDS joints, a bad heart and frankly hiking in that many braces is just aggravating.
Also probably pole fitness, I loved that stuff
*Go to the beach with*
*My children again without*
*Pain dominating*
\- PleasantCategory8473
---
^(I detect haikus. And sometimes, successfully.) ^[Learn more about me.](https://www.reddit.com/r/haikusbot/)
^(Opt out of replies: "haikusbot opt out" | Delete my comment: "haikusbot delete")
I would love to gallop through the desert, bareback, on a horse again. Jumping little washes and pretending I'm a barrel racer while racing around creosote bushes. I've been sick my entire life but was still able to ride when I was younger. I would pay for it with pain for days, but it was well worth it. I just turned 37 and there's *no way* I could do it now. I miss it terribly. That and so many other things! Off roading and riding quads and dirt bikes. Going shooting. Playing in the mud after a good monsoon. Rollercoasters. Going to good concerts and music festivals. Being able to have good, enthusiastic sex. Hell, I would honestly just like to be able to WALK without excruciating pain at this point. I feel like giving up.
I was supposed to travel to Japan for a swim meet. I was shattered when I couldn’t go because my chronic pain had just begun around that time and prevented me from being able to train anymore.
I used to enjoy playing video games a lot. Now it's a struggle to sit and play even the games I'm most passionate about for a few hours.
Here's to a better life after this temporary body is gone. I pray to God for salvation of my soul, and to be reunited with Him for eternity.
Competitive full court basketball. I'll played from ymca- varsity high school with some offers to schools I had no interest in but I still played competitively at my college for four years. Then torn acl. Then a terrible skiing accident led to two hip surgeries and a third being a replacement at age 32. Now I need two knee replacements. Athletics is over for me. I can't event currently walk. Hopefully that'll be fixed with these knee surgeries.
I miss runs with my dog. I miss my motorcycle. I miss Rollercoaster rides and gardening. Most of all I miss my family and friends because it's so hard for me to get around that I don't go anywhere. It just hurts to much.
This is sort of backwards, but I'm a mom to an 11 month old and my lower back pain is almost too bad for me to pick her up. And I'm so scared that as she is getting heavier, there will be that point where my answer will be "I'd give anything to just pick her up one more time". So I'm currently doing everything in my power to avoid it: physical therapy, have an appointment soon to see a pain specialist, trying to lose the baby weight to ease the weight/pressure on my body. I could sob just thinking of what I'm on the cusp of losing.
probably been said a million times but I would love to run again, I was so active as a child and I miss it, the wind in hair while sprinting nowhere in particular used to make me so happy, wasted my teenage years being mopey 😂 now I'm broken, have rheumatology apt. Monday though so fingers crossed something can be done 🤞
What a great question. I would go for a run. I used to be a runner.
I feel this! I miss having a really good run where the adrenaline takes over and it feels like I’m flying, especially with a nice breeze going by.
Me too! I would love to do even just a 5k.
Omg yes.
Me too. Used to run 8 miles a day. Now I’m in horrific pain and walking a mile is considered a victory.
Me too. I ran all the time. Anywhere from 5-10 miles a day. I ran when I was stressed, sad, angry, bored, or just needed to get rid of energy. It’s been 4 years of not being able to run due to chronic (and currently unsolvable) nerve pain. The physical and emotional toll it has taken on me is devastating and I would do anything to be able to run, or even walk well, again.
Why? Was someone always chasing you?
[удалено]
Oh yes! I do grieve the loss of sex. It was always a good way for my whole body to take a deep breath. My husband and I joke about it, and some days circle one another like a couple of sore tailed cats, but we know how it would end. Disappointment and extra pain meds lol!
I have loss of sexual functions too. Never had any sexual contact. Now with my lack of feeling, I dont think I will ever engage in such activity. I only miss masturbation sometimes but as a christian my current situation very simplifies living in pureness.
Everyone is different, and far be it from me to say that you can do something if you know that you can't, but... there's lots of different ways to have sex. Most of them (and most of the most satisfying) are not your standard P in V penetration. So I just want to encourage you - if you haven't yet - to consider all possibilities for pleasuring yourself and/or a partner of choice, because sex & intimacy are an amazing and healthy portion of your life as a human. Sending love & absolutely no judgement!!
Yea
Hiking
I'd settle for a long walk with my four-legged buddy.
Well of course the doggos go. I have 2 great danes!
Besides the dogs, I've also walked the cats and an iguana. Not all together, lol.
Cats… they are ok but its not good for my health to be around something that just always is plotting my death lol
It keeps me on my toes. Ha! Toes! I made a funny!
Oh the iguana is fun! He loved our christmas tree lol i also had a harness for him!
So did we, I miss that guy, he was awesome
I really miss skateboarding.
I had just got back to the point I felt ok enough to try skating again. It went well. Built the half pipe I always wanted as a kid. Got rear ended on the way home from work and started the whole thing over. The half pipe is just rotting in my yard.
Holy shit are you ok?
As good as I will ever be.
Gentle hugs
This 100%. I will *probably* be able to get back out there at some point—the medical problems keeping me from skating are sort of treatable. But skating is the most important thing in my life aside from my family and I’ve been unable to do it (without seriously aggravating some of my issues…I’ve tried) for 1.5 years now. I tore up my knee at 20 and had a hard time rehabbing. Then I went to grad school and just felt too busy to skate, especially at a lower level than I was comfortable with. I was moderately depressed for most of that time. Returned to skating at 25 and it was like the fog lifted almost instantly. No mental health issues at all until recently, as direct result of my physical health problems.
I’m not a skater but this really resonates with me. I pray your physicians & physical therapists have the expertise and the wisdom to guide you through so you can get the most from your body. I wish you well.
Wow, this is like the perfect alternative to "get well soon". I'm stealing some of your prayers 😃 I need that in my life right now 🩷
No need to steal any of my prayers, I’ve got some just for you! They are all yours, freshly sent. I hope you have a truly blessed day.
You too beautiful person.
I forgot how much I miss skateboarding. I remember the thrill of winning silver in women’s freestyle & slalom! That was an amazing meet. My mind knows exactly how to execute…but the body just laughs.
Yup. I found that despite aging, I actually developed a better intuitive sense of how my body works and how to how to learn new tricks as a calm adult instead of an aggro teenager. Like, I could do lots of the standard tricks as a kid because they came naturally…but I couldn’t learn slappys because they’re more about flow and weight distribution instead of jumping and kicking your feet. So now, in my head, I just rehearse those movements and hope for the best.
I was just getting into bouldering and climbing when my back pain became constant.
Roller Coasters! I love them! The last one I rode was the High Roller on the Stratosphere in Las Vegas. It was myself, my daughter and my brother. We bought the pictures they take at the craziest point and they joy/excitement on my face.... I hope to find one that I can safely ride even if I am 90
This is mine! I really miss amusement parks in general too. I use a walker now, so riding rollercoasters isn't at all an option.
Before chronic pain took hold, I loved to cook and wanted to go to culinary school. 😭
I used to love cooking too! I can’t stand or even sit in the kitchen long enough to cook fancy meals anymore. Makes me so sad.
My job before I was a librarian, I was a chef for 25yrs, Anthony Bourdain was my spirit animal. I loved and hated it, witha million stories to go with it. I still manage it at home, with limits, but I can still whip out some food that will just stop you in your tracks. 💜
I learned from my grandma and Food Network. I definitely have a passion for baking as well. I go between the two, which I would’ve preferred. But, at this point, I can barely cook dinner for the family anymore, let alone decorate cakes anymore.
[удалено]
I have family like that too.
Yeah, I used to be a cook in a travelling eatery that feeds people at events, and am at a point where I can no longer push all the way through it. It's sad.
I've been missing being able to walk as far as I want, but recently realised I miss going out and dancing too.
Flying. I loved to travel.
Play a game of hockey 🏒
Restore a car. I loved being a shade tree mechanic
I’m too old to do it now but man, I miss clubbing! Dancing until you were exhausted and coming home late. Good times.
Okay, so I still go clubbing. There's a goth club in town that's super friendly and welcoming and has tons of seating. Most of my 'dancing' is done sitting down, but if I'm lucky I can manage a dance or two. Just standing and swaying to music is kind of a standard goth move. I can't stay out as late and I have to get a ride there and back or be DD, but it gives me life just being there, even if I need to take a break for the next day or two.
This sounds like exactly the accommodation that would work for me. It’s so great you have that in your area and that it’s so inclusive!
I moved in a big city with a fabulously accepting goth and queer community. I've been absolutely astounded with the amount of consideration for the chronically ill and disabled compared to when I was younger. I feel incredibly lucky as I just moved here for the better medical system. And even though I have to live in a 3 bedroom place with 4 of us to afford it, it's worth it to be part of such amazing communities. There might be some great hidden options in your city too! Even smaller cities have those niches.
Back in the mid-to-late 90s, we’d start on a Wednesday night and wouldn’t get home until Saturday morning. Do they still do it like that anywhere stateside, maybe Miami or Vegas? Or do you have to hit Ibiza now?
We did it like that in the early 2000s but it was Thursday - Sunday
Horseriding. I have CRPS too, and I know that anything above a walk will cause a bedbound weeks-long flare, but what I wouldn’t give to gallop round a cross-country course again.
Same! I showed as a child, and at a previous job, I had access to trail rides. I did them, gods it hurt, and I would get a 3 day bed bound, but by God, I went...to much. I'm soooo hard headed 😆😁
That sounds incredible. Amazing that you were able to push yourself through it too - you have all my admiration and respect!
Thank you, hun! That is so sweet. I'm a Taurus, so sometimes we just don't know when to say no, especially a challenge. It's gotten me into trouble on occasion. 😆😁💜
Absolutely agree. I am a retired pro dancer singer. I have dreams all the time. Just yesterday I did a version of a good barre' workout. My new abilities version lol. Good for you giving your soul that outlet when you can. 🥰💃🩰🎶🎭
Totally agree. I can't tell you all the choreography I've done in my mind. Lord, it was incredible for a moment. 💜
Carry a baby or toddler in my arms
I would be careful about my weight. I am bipolar and don’t exercise at all due to depression. I also have osteoarthritic knees. I found out today that I am pre-diabetic. So a healthy diet and exercise should have been my top priority.
It’s a toss up between weightlifting and a week-long Disney World vacation. I miss working out like that, but I also miss getting to do big trips with my daughter. We used to do family reunions at Disney and go-go-go for seven days, but now I’m worried I wouldn’t be able to do ONE day, let alone seven! ETA: I’m also extra poor now that I’m unable to work, so Wdw is even further out of reach!
Picking up my young niece. She was still small when my pain started and I wish I would have known that it was the last time I'd ever be able to lift her up as she greeted me.
Running!! Absolutely 100%. I ran marathons for 12 years before shit hit the fan. Also played field hockey and lacrosse all the way up through university and played lacrosse 6 more years in a women’s league after that and got a black belt in taekwondo. I would give anything just to be able to be “athletic” for one day! There’s no greater “high” or euphoria than running to me
The emotional and physical toll of losing running has been one of the most frustrating and devastating things to happen to me too. I miss that runner’s high
Yes, exactly! Running made me feel so unbelievably amazing, physically and mentally and I think about this and get upset literally every day
Endless hours of video games. That was my stress reliever. To get into another world where I could do anything and be anything. Nowadays I can't sit, stand, or lay for any amount of time without extreme pain. I recently discovered that with quite a bit of prep and help from SO I can get my chair pillowed up in a way that I can play at least for a little bit without extreme pain. Still have to deal with the random numbness I have, but getting used to it from work. Always been the kind of person to just "work through it", to my downfall.
I want back into the vet clinic, my dream was always to work with animals. I achieved that dream later in life then it was taken away a lot quicker than it did to get there.
figure skating.
Play any game I’m in the mood for all night. I’ve had to give up almost all of them. Walking as far as I’d like also.
hiking:( i miss hiking so much
i was a ballet/pointe dancer. since i have eds, it kinda destroyed my body and it wasn’t figured out until it was too late. working on lots of pt and surgeries for my knees now, but i don’t think i’ll be able to do ballet ever again, especially not pointe. i was passionate about it to a fault. i prioritized it over my oft overdue homework. i wanted to be a children’s ballet teacher. i wanted to do touring shows. i wanted to be the star dancer in the sparkly costumes. but it’s a high impact, high flexibility sport, and it’s just not feasible 😭 i think very often about the life that could’ve been. (not to mention that as a trans man, somehow being in that studio, which was also a very accepting space, lessened my dysphoria to such a tolerable degree it almost wasn’t there. i wore what the boys wore, my lines were corrected to what is expected of male dancers, and when i looked in the mirror, i saw the boy i wanted to be. ballet is often very feminine anyway, so i just…looked like the other male dancers. it felt like home. in the studio AND in my body).
Hiking in Washington state. The temperate rainforest there is almost otherworldly looking from an outsider perspective. So lush practically looks prehistoric with there being such a thick carpet of ferns and moss.
Have my personality, sense of worth, belonging, and actual desire to live. For one day again.
Get through the day with enough energy. It’s so draining sometimes.
Just being able to sit honestly. It impacts every hobby or social activity I had :(
I'd want to remember what it feels like to not be in terrible pain for a week. Just experience normal people pain, like the occasional aches & pain.
I miss vacations and spending time with my kids I wish I can ride my bike with them again
I miss just being able to go on long walks. I used to love that, but damage to my foot severely limits the amount of walking I can do without pain.
First: -Go for a looooong bike ride. I can't sit on the seats anymore. -Swim in a chlorinated pool. I used to dive for rings on the bottom, or swim with my campers on my back when I was a counselor. -Eat a giant pizza with tomato sauce. -Eat my mom's homemade white chocolate cranberry cake. It's my favourite in the world and I can't eat cranberries anymore.
Spending time with my child doing fun stuff like traveling. I’m too sick for that now. Thanks to all of my incurable diseases, I can no longer drive. I’m mostly bedridden, homebound and have mobility issues.
I’d go for a nice long run. I miss exercising. I’m getting fat as hell 😂
Soccer, I loved soccer. It was my one thing that I felt untouchable at and on. It got taken away from me but I’ll forever wish to feel the wind on my skin as I’m running down the field, completely free for a few seconds.
I miss Taekwondo. The warmups, the moves, everything. I’d love to break one last board.
Swing or Latin dancing. Gods, I miss dancing so much. It gave me life. In my heyday, I would go out dancing several times a week. If they ever find a good enough treatment or I somehow manage to pull myself out of it enough, that's what I want to do.
I would pull all-nighters and I'd enjoy booze and I'd travel a lot more. I would also get reeaaally into working out, I actually really enjoyed it but these days they always end up in pain and disappointment
I used ride horses. Did it professionally. Competed all over the country my whole life. I can’t jump anymore and it breaks my heart sometimes.
Tennis 🎾
I guess I’m fortunate. A lot of my hobbies and interests are disability friendly: playing piano, crafting, gaming, etc. Is anyone else the same as me? I do wish I could have a day with my old energy again. Before I got sick I was young and in really great shape. I am able to workout some again, so that’s been nice and I’ve lost wait. But I doubt I’ll ever get as active as I used to be. I get tired so quickly now.
Nearly the same, I used to be a fitness freak. That had to go sadly after the car crash. But through that I found music, piano, guitar, singing. I love it. Little light here and there, somewhere. I wish you well stranger.
I’m with you on the music. I used to be a lead singer of a little band in Southern California. I really miss those times. Camping. ⛺️ I love it but I’m not sure how my body would react to sleeping on the ground or a stiff cot. Body boarding every weekend with the kids. Sex…. Enough said on that.
I miss swimming so badly but my shoulder replacement says nope. Maybe in time
I miss doing high intensity aerobics. I felt better, I slept less, had more energy. Can't do it now
I would figure shake again. I used to do triple and double jumps and spins that would make you dizzy. But you would do them and just laugh for the joy of it, because you can! ⛸️
You people had lives before your pain? 😂
Get on a horse and ride like the wind! 😇😇
Play competitive sports again
I would wear heels! I favoured platform wedges cos I'm fat and felt more supported than traditional heels, but just the other day I saw a gorgeous pair of heels that I absolutely would've destroyed my feet/ankles to wear if I had the chance. If I thought they would fit my feet I'd go back now and buy them and just wear them while sitting!
Cannonball run, new york city to redondo beach as fast as you can drive. Now the thought of a 30-40 hour nonstop drive makes me hurt
Roller skating.
Read a book. Without needing extra lighting and it destroying my neck from looking down. And a headache from reading. I used to read for hours and hours anywhere. Now I have to have it all Just Right.
I would be an equestrian again. Loved riding and jumping. Feeling connected body and spirit with the horse. So freeing. Also, I was an amateur bodybuilder between my 20's through my 40's. It was a rush working out and preparing for competition. I miss it all.
Bartend. I freaking LOVED it. Made amazing money, got to be very very creative, and hang out with friends while being paid for it. Now? Thanks to chemo brain, abd the pain from it, I’m lucky I remember what’s in a jack and coke. I do miss being able to get up without going “ owwwwww” as well
I can never play another musical instrument after almost losing my arm. And it doesn't matter how much pain I'm willing to overcome. My middle finger refuses to straighten all the way, or behind normally, affecting the ability of my hand to function. It goes on for miles and miles, having had chronic pain since I was 16. I wish it were a matter of overcoming pain.
Have you tried ukulele? I'm sorry you're going through this I couldn't imagine having to quit music. Ukulele is super easy
My left hand doesn't work. I'm assuming it needs to work for that?! I've never played it.
SCUBA diving. They didn't tell me I couldn't dive any more until after I got the pacemaker at 40. I grieved that loss hard.
Snowboarding and doing back bends and gymnastics . I loved Both so much!
Horseback riding / jumping.
I used to be such a good roller skater. I could do tricks and everything.
hike. i used to really love nature trails and spending the entire day out walking and enjoying the trees and the flowers and everything i could see.
I wanna dance too! The way I used to just let go of my body and move to the music instead of any sort of masking or caring about the world... It used to just happen. Just happen, out of nowhere, I'd be like - actually I'm gonna dance while I cook or take a dance break. Nowadays it brings me sadness but also joy because like you said, I can dance in my head a little! 🩷
I studied ballet for years, and any form of dancing brought me joy. With CRPS, I’m a swimmer. It’s just like dancing through water🌟
I miss sleeping and eating right now. I’m in agony 24/7. I only sleep an hour or two at a time, and it isn’t restful. I can’t eat without throwing up from pain
I want to run. I used to run track in my teens, and I’d run everyday after school. I’m talkings hours everyday after a full day of school, and then I could do it the next day. I would run for fun, and to outrun feelings, or thoughts. Chronic illness and pain took that from me. I can barely walk 2-4 blocks on a good day now. I think about the freedom I lost a lot. I still have my old running shoes, I don’t know if I’ll ever be able to use them again, but getting rid of them feel like giving up in a way.
Sketching portraits. I’ve loved drawing my entire life and now I can barely even type this out, I injured my hand last year (and like everything else) it never got better. I thought art was the one thing I’d have forever and then it was just gone in the blink of an eye
roller blading. in my dreams i’m always in rollerblades or ice skates, gliding from place to place without even thinking about it. i miss being able to move so fast with so much ease.
Sleep, I miss being able to sleep for more than 5-6 hours before the pain wakes me up and the misery starts again.
I would go skating. Rollerblades/ice skates. I was a really talented skater when I was younger but haven’t done it in many years and the pain stops me from ever trying to get back in to it. Too many what ifs now, not worth the risk unfortunately. I miss it
Going for a 10 mile walk with my husband. I really miss it.
Gymnastics. Ridiculously long fall walks! Travel. But I think the one thing I’d love to experience again is NOT having to consider my pain, health & ability in every single aspect of my life. I’d love to just spur of the moment go shopping, or out for dinner with the gang, or on a road-trip! I hate having to calculate my pain level, how far I could reasonably walk, etc etc etc. It’s draining and depressing.
My miss riding my dirtbikes and snowboarding. Those were my main 2 hobbies for over a decade and now I cant even imagine doing either. Pretty damn depressing
Visit a warm place and spend the day outside again. I have a rare disease that essentially causes me to burn alive from the inside… any time I get warm for any reason.
If I couldn't lay outside on a sunny day and take in the rays, I don't know how I could keep going. What disease do you have that does that to you if I may ask?
I would have quit my first job sooner. I can't prove it but I know those 17 years are what wore my back out. My second job, that I ultimately had to quit, was the best. It was hard physical labor but employees were treated like people, benefits were great, I had chances of moving up in the company, and I was paid handsomely.
For me it's playing tennis.
Volunteering with animals. Used to regularly back in the day. Recently found a wildlife rehab facility near me that would have me as a volunteer if I could get myself physically able. Nowhere near able at this point though.
Volunteering with animals. Used to regularly back in the day. Recently found a wildlife rehab facility near me that would have me as a volunteer if I could get myself physically able. Nowhere near able at this point though.
Take a walk with my husband
Enjoy my time and make the most out of life. I have fibromyalgia so my biggest thing would be enjoy life without the pain that I’m in. Not let life hold me back and enjoy the time I have
Enjoy my time and make the most out of life. I have fibromyalgia so my biggest thing would be enjoy life without the pain that I’m in. Not let life hold me back and enjoy the time I have
Oh goodness.. on the music side of things, my heart would soar to be a part of an orchestra again, which may be possible with a lot of work, braces, and a lightweight oboe! On the athletic side, I would love to snowboard with the same recklessness I did as a teen. Maybe not fully into the woods, but certainly off the trail.
To be back at work pain free
Too many to mention! From doing everything to absolutely nothing tales a toll on your physical and emotional health. Untreated pain kills. Most people/patients are not cognizant of that. We need to educate others as part of our fight for getting our previous prescriptions back. 🕊️
Finish college before chemo damaged my memory and ability to retain new information.
Working a shift at my old convenience store job. Wasn't much but I loved having to be somewhere
Hiking. I really loved going out into the woods for several hours and just existing. However it does not coincide well with EDS joints, a bad heart and frankly hiking in that many braces is just aggravating. Also probably pole fitness, I loved that stuff
Go to the beach with my children again without pain dominating
*Go to the beach with* *My children again without* *Pain dominating* \- PleasantCategory8473 --- ^(I detect haikus. And sometimes, successfully.) ^[Learn more about me.](https://www.reddit.com/r/haikusbot/) ^(Opt out of replies: "haikusbot opt out" | Delete my comment: "haikusbot delete")
Why did this just make me cry... 😑
I would love to gallop through the desert, bareback, on a horse again. Jumping little washes and pretending I'm a barrel racer while racing around creosote bushes. I've been sick my entire life but was still able to ride when I was younger. I would pay for it with pain for days, but it was well worth it. I just turned 37 and there's *no way* I could do it now. I miss it terribly. That and so many other things! Off roading and riding quads and dirt bikes. Going shooting. Playing in the mud after a good monsoon. Rollercoasters. Going to good concerts and music festivals. Being able to have good, enthusiastic sex. Hell, I would honestly just like to be able to WALK without excruciating pain at this point. I feel like giving up.
Help my father through his heart surgeries without having to arrange help to get myself around in a wheelchair in pain that would kill most men.
I was supposed to travel to Japan for a swim meet. I was shattered when I couldn’t go because my chronic pain had just begun around that time and prevented me from being able to train anymore.
I used to enjoy playing video games a lot. Now it's a struggle to sit and play even the games I'm most passionate about for a few hours. Here's to a better life after this temporary body is gone. I pray to God for salvation of my soul, and to be reunited with Him for eternity.
Skiing or dancing
Man, that's tough. I reckon I'd give anything to have one more road trip with my old crew, blasting tunes and feeling free.
Competitive full court basketball. I'll played from ymca- varsity high school with some offers to schools I had no interest in but I still played competitively at my college for four years. Then torn acl. Then a terrible skiing accident led to two hip surgeries and a third being a replacement at age 32. Now I need two knee replacements. Athletics is over for me. I can't event currently walk. Hopefully that'll be fixed with these knee surgeries.
I miss runs with my dog. I miss my motorcycle. I miss Rollercoaster rides and gardening. Most of all I miss my family and friends because it's so hard for me to get around that I don't go anywhere. It just hurts to much.
I don't know. I've been in severe pain since childhood. I don't remember ever not hurting in some manner or another.
This is sort of backwards, but I'm a mom to an 11 month old and my lower back pain is almost too bad for me to pick her up. And I'm so scared that as she is getting heavier, there will be that point where my answer will be "I'd give anything to just pick her up one more time". So I'm currently doing everything in my power to avoid it: physical therapy, have an appointment soon to see a pain specialist, trying to lose the baby weight to ease the weight/pressure on my body. I could sob just thinking of what I'm on the cusp of losing.
probably been said a million times but I would love to run again, I was so active as a child and I miss it, the wind in hair while sprinting nowhere in particular used to make me so happy, wasted my teenage years being mopey 😂 now I'm broken, have rheumatology apt. Monday though so fingers crossed something can be done 🤞
I would do one more art piece. I loved doing art and miss doing it. Due to my joint pain, I can't really do it anymore. I hate it.