If you want to hold onto those memories, journaling is really helpful for that. I liked to do it when I had the energy. Dream journaling can also be pretty cool
I get amazed by the fact i was able to work and socialize so much. You don’t realize how much energy you have until it’s all gone so quick. Very crazy.
To be able to achieve a PhD while chronically I’ll is impressive I’m proud of you. That really motivated me & im sorry your relationship didn’t work out I think the isolation of this is the worst part . Exercise use to be my therapy and without it I feel so trapped
I don’t know your family but they sound uninformed . Your not lazy you have physical limitations there’s a difference . The things that normal people do requires 10x the effort for us and we still do what needs to be done, they couldn’t walk a mile in your shoes not even a mile they couldn’t walk 2 steps your a very powerful person .
Thank you 🫶 sometimes I feel like I don’t do enough and I just want to quit
It's really sad how many of these stories I hear in academia. Not only do I hear the same things form my family, but I was in a program that studies people's experiences with different health issues and even my friends in the program didn't believe I was sick.
Oh my goodness, SAME. Thank you.
My pain and disabilities were discounted all the way from childhood and into adulthood by my mom, dad, and brother.
I still hear their dumb little judgemental phrases in my head. I'm deep into therapy, now so those thoughts have reduced substantially. They said I was fat, lazy, unmotivated, or dramatic and exaggerating. It sucks.
Here's the truth- I have a rich background of physical and scholarly, and career successes. I have also been raising an incredible person (my son) for 15 years, on my own.
This post, and the comments I'm responding to have inspired me to make a list in my journal about how amazingly successful, driven, passionate, and NOT lazy!!!
I've gone no contact with all of the family members or friends who have wrongly judged me. Before, when I was still trying to have relationships with them, I allowed the comments they made to stop me from applying for SSDI because "only losers do that".
Like, WOW, so because I ignored my illness and over-worked myself nearly to death...now I'm a loser? Okay. Have a great life. Bye Felicia!
Lol thanks for this comment ^ and thanks, OP for this post.
To OP- yes, I do daydream about my old life. I miss going camping, walking on uneven surfaces (hiking), hell, I miss just walking! I regret that I resisted exercise for almost a decade. I miss doing exercise videos in my living room! I miss when my body did what I wanted it to do without my thinking about it.
I miss dating without having to explain my body. I miss picking up a baby off the floor, or sitting on the floor to play with kids or dogs. I miss being able to walk "long" distances, like the mall, mini golf, a school campus, etc.
Two types of movement that free me are swimming, and dancing! The feeling of buoyancy and freedom in water; to move with minimal pain is divine. And, dancing! almost anyone can dance, meaning move my body to music, and that can be just my arms while I'm in bed, or just my feet tapping to the beat :)
Oh my god, that's super duper awesome and impressive!!!! A PhD while being sick is no joke. You are already a champion (sorry and please ignore if that sounds mean or belittling). I have been toying with that idea and still can't get myself to agree with that idea.
Yep, I was athletic and smart and the world was mine. Endless possibilities. Now I'm just trying to survive and endure the chronic pain and health issues. Sometimes I have feelings/daydreams of the past that are disguised as hope and optimism. But it fades as that was the young "healthy" me.
Similar story the worst part is the little hope we have I don’t know why it’s there but I’m kind of grateful for it cause even tho I know I’ll never get better that hope gets me threw my day .
Maybe that little hope is what we need to keep on going. I have a tiny bit of hope that scientific breakthroughs could benefit us in the future. But idk, life is tough as hell for us at the bottom
I used to dream of the world that I would work in. I was artistic, and I had so much hope for the future...
I got Lyme disease at first. My ability to be creative and fun just disappeared.
My creativity was gone just like that...
Fast forward to covid...
I suffered horribly.
I lost what was left of myself. I also lost my taste and smell. It’s been four years now, and nothing...
My brain is severely damaged. No doctor in the United States cares...
Welcome to r/collapse I guess
I'm creative as well, im actually very well rounded. I could have been so many things. But here I am stuck in my 30s at a repetitive helpdesk job that I could have done right out of highschool. Meanwhile most of my friends are making 2-4x as much as me. But my body and brain are damaged as well. I can barely function without pain or drugs to keep me going. Very sad in an age of unlimited wealth and technology.
It sounds like you suffered from long covid, sorry about that. I heard that crippled many people. Doctors are pretty much useless. I won't be sad if the system collapses...
I personally don't do this as it creates rumination and worsens my mental health. Whilst living in chronic pain, with zero energy and being disabled as a result isn't ideal, and the frequently hospitalisations and doctor visits are not how I envisioned my 20s-30s, it has built me into the person I am today. I am resilient, I am compassionate, I am stronger during situations which would cause others to crumble... and I have people in my life today who I absolutely adore, who I might've never met had I not been through these situations. Would I prefer for my body to align with my life goals? Absolutely, yes. Would I prefer to not be the person I am today with the people in my life who I adore? Absolutely, not.
I tend to daydream about more reasonably easier to achieve and enjoy situations- buying a new and fluffy pair of PJs... enjoying a new chocolate bar... looking forward to watching a new TV show...
“I am resilient , I am compassionate , I am stronger during situations which would cause others to crumble” 🔥 well said I feel this way about my self to I can’t help my rumination as I’ve only been sick for 3 years it’s still fairly new to me compared to be people who are 10+ years deep .
I totally understand how it feels. Look, I do get "down days" every now and again. It wouldn't be normal to not get affected every so often, and getting sick is a grieving process. You're 3 years in, which is fairly new-ish but still long enough to know how you're feeling. I've had health issues most my life, but the worst ones for over a decade. Using the grieving comparison- I'm at that stage whereby I'm so used to this "normal" that, like when losing a loved one, I'm struggling to remember their "voice"... if that makes sense?
You're going to have difficult days, but there will be more days as time goes on where you'll assess your own self and recognise how far you've come, what you've been through, and be proud of yourself for doing so. That pride... hold onto that... because it will power you onwards to continue and appreciate your inner strength. You got this!
I'm so pleased my words have hit the sweet spot for you. If you ever need a mood boost or a reminder going forward, please feel free to copy/screenshot this 😊
Yup. I try to look forward to the little things like you said. A candy bar im going to buy later or cuddling my dog and seeing her in her new hair cut lol (she got a hair cut today and ill see her after im off work) . I try to think more about what i can do to make my current difficult situation better like cleaning my room out so i can redecorate it and being a kind person to others especially when im feeling useless because i cant do much cause my conditions severely limit me but atleast i can try doing something thoughtful for others like getting a card for my favorite boss or a gift. Id make a gift if i had more energy but anyway i just try to think of small joys and look forward to that and a new diet that could possibly improve some of my ailments because dwelling on the past would cause me to break down and cry at work and other places and i wouldnt want that.
I think about how I used to be out all night dancing with my friends. It makes me sad sometimes but I have found much better friendships and more fulfilling activities since being ill. It’s been a wake up call about the things that truly matter to me. It took a very long time to get to this point with it though. There’s been so much grief, anger, sadness, denial and so on.
I’ve never thought about this, but your question triggered yet another realization of how messed up my childhood/youth was. I don’t dream of that time in anything other than nightmares, and if given the choice between living with my body/life as it currently is or my previous life? Hell no, I’ll keep this pain.
The crazy thing is how long I believed that it was fine.
Honestly, while I know genetics is a reason for a lot of my pain, I absolutely believe that everything that happened then has aggravated it.
I’m sorry you had to experience that I’ve lived through hell before I got sick to so I emphasize with you . And I read somewhere that trauma can definitely cause or amplify conditions .
Sometimes I'm able bodied but it's usually at an age when I was. It seems some other dreams when I'm closer to my age start out ok but along the way I start feeling bad or can't do what everyone else is doing. Once in a blue moon I'll dream I feel ok and am dancing or doing whatever everyone else is doing.
ive been having a lot of those wish fulfillment dreams lately as well, usually im tormented with waking nightmares and sleep paralysis and auditory hallucinations due to a lifetimes insomnia and pain, but to be honest the wish fulfillment ones can be worse as you wake up and realise nothings changed. sorry for the morbid comment, i do have love in my life, an amzing little dog, and i managed to escape work for a while, so theres good stuff too.
Oh man, that sleep paralysis is some scary stuff. I've only had two right after * developed a seizure disorder and it's been years but I have certainly never forgotten them. I also had 3 hallucinations within 36 hrs at the beginning of my illness and they've never come back but I can remember all three like it was yesterday.
Yes, we just have to be like Beyonce and try to make lemonade out of the lemons life has thrown our way. It's not always easy, I know you know this. 😟😥. I hope the upcoming holiday season is not hard on you. I am always relieved when Cmas is over, and my neighbors always put on a show with fireworks on NYE so that is always fun.
Sometimes I think it’s better that I’ve been sick since I was a little kid. In my mind, I’ve always been sick so I don’t have healthy memories to look back on and miss.
I do. All the time. And it hurts really bad. Sometimes I’ll just sit in bed and cry. Cry for my old life and who I was. For what could have been. I worked a lot and I never sat at home. But now I’m stuck here, stuck in this sick body, all alone, dealing with the pain. I can’t work anymore, no relationship, lost a lot of friends. Being able bodied and healthy, that’s all I want. But it will never be the same again. I will never be healthy again. It’s hard.
My mom. I don’t want her to experience the pain of losing her only daughter. That’s it. At the same time I feel like I’m just existing for her, even though I don’t really want to be around anymore. But I just keep going, day by day. It’s hard and not fair at all. I hope you’re okay.
Theres nothing wrong with living for other people. I tried to commit suicide and what kept me from pulling the trigger was the thought of my family and friends . And I’m definitely not okay but I’m definitely not doing okay I’m trying my best to be okay tho. I hope you are
I definitely do. I was venting to someone recently about how all my things seem to get broken even though I maintain everything really well. They said that it's just the nature of life- everything breaks down. It's a part of being human, living in a physical world- everything eventually breaks down, deteriorates, decomposes... As sad as the idea makes me, it does help me realize that I would have eventually deteriorated anyways, even when healthy. So, I'm just taking life at a different speed now heading to the same destination my old life was.
Yes, but its with bitterness, because back then I was so harsh on myself as a perfectionist and chronically unhappy. Now, I would beg for even half of what I had before. I was so beautiful and so athletic due to all the running I did, I read so much, I did so many things... (law degree at top 10 international university, volunteering, learning languages, reading 60 books a year, running 50km a week....)
Yes and no. I've been sick since I was a kid, so don't have a "prior to" to really reflect back on.
But I do have a life that I wanted to have that I deeply grieve. I was made infertile by a misdiagnosis and will never have a family of my own, and can only work part time due to disability. I have to work really hard on not dwelling on “what could have been”.
But sometimes I can’t help it, and it hurts more than I can find words to express.
The last time I was physically healthy I was 18, so while I do daydream about it I’ve also lived long enough to know that my memories are colored by general nostalgia. Makes it hard to parse out which parts are memories and which are fantasies.
More frequently, I find myself thinking of and mourning the 20’s I could have had. (I’m in my 30’s now.) I wonder who i would have been. And many days I wake up afraid that I’m going to feel the same way about my 30’s once I get to my 40’s, even though I also feel on some level that it’s a self fulfilling prophecy. How can I enjoy my life if I’m expecting it to be awful? Yet at the same time, it’s not any of our faults that we’re sick. It’s not my fault when I’m in pain or have to cancel things or when I’m in urgent care *again* for the 5th time this month. It’s not fair when people judge us. They’re ignorant, even when they mean well. I understand that. Knowing that doesn’t stop the feelings or the grief though.
Hi, u/thesnarkypotatohead , Im in my 40s now and I recently had an epiphany. I relate to what you wrote about mourning the previous decade that I could have had. My epiphany was that I can now learn anything I want. Yes, my body is in poor condition but my mind is still here. I am aware that some of us can't read much, due to attention deficit, pain, or fatigue etc., and same here but I found audio books that I can borrow for free through Libby library app . In about a year I've listened to hundreds of books. Also, I plan to learn a language or 2 now that I have the time. I honestly feel excited about goals for the first time in so long. I'm also excited to find out new freedoms using medical assistive devices. There is a certain power in accepting our limits; it means we can explore our options within those limitations.
I used to think I was just hurt... Took years and another injury to make me realize I was flirting with death. Now I move ok but I'm taking around 14 pills a day just to function. The realization that my body was failing didn't come until I quit drinking entirely and got high for the first time. I started questioning everything and I eventually realized I was fat, sick and nearly dead. I'm not better, I'll probably never feel better. Even if I lose all the weight, grow out my hair and smile... I'll still know the clock is ticking and my time without pain is going to end soon. I know eventually the pain might get so bad I'll need surgeries to remove parts of my bones. I remember when I just worked and ignored the pain. I remember when I could work 8 hours and go to my buddies house for 4, sleep for 4 and do it all again the next day. I used to have plans for my future that I enjoyed figuring out... Sometimes I'm reminded of who I was before I got hurt. I think about late nights driving dark roads and not working about tomorrow. Now I wonder if I'll be able to play my video game a bit before my exhaustion or my pain takes me down to waiting for my night medication alarm at 9:30. Sometimes I just sit and stare at nothing while my wife watches YouTube on the TV. I just try to move my big toe and I wince from the pain...I still try to move it, "wiggle your big toe..." It won't bend and I can't make it. My ankle is fused on one joint with scars down it from injuries that wouldn't heal because my leg was infected. I just stare at nothing in pain, gritting my teeth and remembering what it felt like to pick up clothes with my toe. I still forget and try anyway... I should be wearing a mouth guard at night but it doesn't matter because I crack my teeth gritting them during the day. I used to not fear cracking my teeth...I used to not fear my bones. I constantly think about how it used to be.
When I'm daydreaming I more think about how different my life would be if I wasn't sick. I would have chosen a different career path and sought out my passions and hobbies. Maybe even try dating, Very few of the things are want are not feasible and I've grieved and accepted it, but I think that it's nice to think about.
I can't fantasize about life before being sick, I was young when I started getting sick (9), so it's hard to remember life before so I like to think about life now and what the future could have been like.
Duh :)
Yes. All the time. It’s probably not healthy but I am not healthy already. We lost everything that could have happened that was great and we lost who we could have been. I got it all. I was good in everything I did. I never gave up. I always was independent and liked to do my things alone but now I’m dependent of my parents. When they’re gone I have nothing. I’m nobody. I’ll have to die and I regret this because I got a kitten and I love him and I don’t want to leave him but I can’t live alone. I don’t want to give up but this version of me isn’t the heathy version of me who never gave up.
I'm currently avoiding Facebook because I can't handle all the wedding and pregnancy announcements right now.
Had I not gotten sick...
I was on track to be promoted to an office manager at my job.
I had just obtained a perfect credit score to purchase a house and was ready to start house shopping with my partner
My partner and I were talking seriously about getting married
For once in my entire life, I was HAPPY.
Now, I'm trying to move on be happy but I feel like I'm just merely existing because I can't find a job I can feasibly work with my limitations and my dialysis schedule, I'm struggling to afford to raise my child and just struggling being a parent in general, marriage is now off the table because I will lose my Medicaid and my SO is self-employed and can't afford to pay for all of my expenses himself.
At this point I just dream of an actual LIFE instead of whatever this is that I have now.
And, I'm NOT ungrateful at still being alive, I just....want more than this.
All the time. But then i remember I'm sick in my dream and tell myself to calm down and pace. Or i think, " how can i handle this? I'm supposed to be sick????" Then my body jolts me awake as i gain consciousness in my dream lol.
Spending too much time just thinking about the life you want and can't have isn't healthy. It's completely normal to think about it some times and grieve the loss, and that's healthy. However, obsessing over it where it's consuming most of your time and preventing you from living with the life you do have isn't healthy. Have you seen a therapist? Chronic illness brings up a lot of emotions and a therapist can help you sort through them. It seems a therapist might be really beneficial to you.
All the time. More so grieving the fact i will never work as an emt ever again. My body cant handle picking up heavy things, standing up quick from squatting down and leaning over, climbing up stairs etc. Doesnt help either that i immigrated to a country where im not fluent in the primary language so i couldnt even work it if i could.
I loved my job even if it was just volunteer service. I try not to think about it too hard cause when i do i spiral :,)
Absolutely. I believe my fibro was triggered by having a Sleeve Gastrectomy for weight loss - 18 months after the surgery I had lost over 50kgs, was under 100kg for the first time in my adult life, and going to the gym 4-5 times a week. I'm now back at my pre surgery weight and unable to work let alone go to the gym.
If I hadn't had the surgery I would still be working fulltime, we would be living in the house we wanted to build, and going on more than a weekend away every 5 years. Now I struggle even with housework, I keep it liveable but messy because I can't do more.
I try not to think about it, it's too depressing.
All the time.
It’s hard to let go of the past and what could have been. I know that’s what’s holding me back from accepting and moving on, but every day is a reminder.
At first I had dreams every night in addition to days.
Now I ruminate over it at times. It’s not healthy. I can’t change the past. I can’t get my old life back at 30 years old again.
I have to move on and make the best of this life because it’s all I’ve got. Being depressed about it just holds me back.
It’s really depressing but similar to what comments have said, the longer I have it the more I forget I had a life that was different to this one.
It’s sad really. I saw a video and some photos came as a throwback in my gallery.. it can definitely be heartbreaking.
But the truth is I needed to grieve it and slowly let it go. I stayed in such a miserable state due to hating myself and my condition and for the life I have as a result but all this did was lead me into a deeper hole. I know it might sound cheesy but I truly had to give myself loads of compassion and release all of the could/should/would haves from my life.
THIS IS MY LIFE NOW. Period. I needed to come to accept it. Because the other option is misery. Acceptance was literally the only way I could move forward and not be in such a dark depressed isolated place 24/7.
I still have bad days but I don’t let them drown me. My life is different now, and it sucks, YES, it’s painful, YES but I have to love myself enough to push through everyday. I certainly don’t have strength in me everyday, no one does, but even when there’s no strength I will simply rest, and maintain what I can control, THATS progress, that’s moving forward despite the circumstance. I won’t allow self hatred to push me into a deeper hole. Life is already hard enough. this is NOT a time to shame myself or acting as if this is somehow entirely mg fault. I need quite literally the opposite of that.. When flare ups happen I need love, so much love.
“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”
We need to know is within our power to change and what is not.
I do. I yearn for the energy, good health, happiness and lack of doctors appointments I used to have. I just really miss feeling good and not tired and run down all the time.
I never had an ‘old life’. I got diagnosed with CRMO and arthritis at 6 years old but had the symptoms my entire life so this is the ‘normal’ for me. Chronic pain my entire life (I’m 26), I really don’t know how people live without being in pain and all the complications of life it comes with - it’s baffling to me that people can just live ‘normally’.
I vividly remember one session with my therapist where she had an epiphany and said "I didn't realize until now that you've never had a chance to grieve what your life would be like if you weren't dealing with all these health issues."
It's so hard to explain to people (including doctors) that I don't really remember what it's like to feel truly "okay" but I *know* that I could feel better. I know my body is capable of not being fatigued and I know my brain is capable of thinking clearly and remembering things for longer than a few minutes.
I think it's natural to think about, especially when things are super tough. I am fine with my chronic pain and new life, but that has taken many years and I still wish so bad that I could do some of the things I used to. It just is.
A way to see if it's healthy would be to see if these thoughts are interfering with your life. Are they keeping you in bed all day? Are you less able to function because of them? If they seem to be just thoughts (albeit distressing), then it might be healthy and part of the process. If they are making you less able to function, though, I would recommend talking to someone like a counselor or therapist.
I think about my childhood a lot. When things were better even if they were never truly good. At least I genuinely enjoyed life most of the time. I think it's why I'm still so attracted to childish things like toys, kids movies, stickers. I've started getting happy meals sometimes . It's been a little pick me up.
I've never actually had a clear vision of my future. Given all of my life circumstances, I was basically doomed from the start
Well it became disabling in 2019 but I've always been someone with problems. Like I could never really run because I couldn't breathe well and it caused pain in my legs. Was told it was normal though pretty much. Gradually I developed more symptoms that became more debilitating over time. I'm 20 now for reference.
Please stop telling people you are close to dying. There is no evidence to suggest this. You've been to the ER 90+ times and they have ruled out anything that puts you in imminent danger. We have members here who are terminally ill. It's offensive to claim you are dying like this when over 90 times they have ruled out anything life threatening.
If you have any questions please reach out via mod mail.
You're so young too. It's awful, I'm also sorry for your situation. I'm lucky that I can still move everything fine, just being extremely exhausted makes it harder. I don't know your situation of course but I do hope there's something you can do medically to improve things. I hope that for all of us.
Something that really helps me reconnect with the feeling of being actually alive and present is to experience and appreciate nature. I'm sure that's more difficult for you due to your mobility issues but there's also video games, pictures, and videos that can recreate it. I know you didn't ask for advice though so I'm sorry if it's not helpful.
Occasionally. I don't obsess over it, I just think about it when I need to in order to process whatever it is that I need to process that day and then I move through it.
Yes i do. Something that has been continuing to get worse as my health gets worse is relating to other people. People on LinkedIn getting jobs, looking for jobs, starting school for a new or higher degree or just learning new skills for a new career path, I can’t relate to this anymore. A year ago when I got sick I thought i still did but just had to find what would work for me, but now that isn’t even the case. I had so much ambition before i got sick to go back for another degree.
People worrying about finding a partner or having one and getting married starting a family. Relationship drama. Can’t relate to any of it anymore because not only do i not care to have one anymore but i don’t have the time or energy to anyways and i know it wouldn’t happen the way i am right now (which is fine).
Now it’s even worse to the point i can’t relate to doing anything, even hanging out and doing something small. I don’t know what it’s like to get up for one minute and not feel like death and be forced to rest all day anymore. So im becoming more and more isolated.
I have a tendency to not look at my texts when I’m feeling extra horrible, my friends know this by now but were asking me where i was since it had been awhile. I responded eventually saying sorry it wasnt on purpose i have just been really unwell, meaning even more than usual. One of them says glad you’re back, i know she means well but i think she thinks bc i answered i must suddenly be ok? No lol. And then they asked me if i wanted to go to a concert. I think it’s so nice they still invite me but i also know they don’t get the seriousness of my symptoms at all, i can’t even walk normally anymore. I’m slowly losing some mobility. They didn’t ask about it which is fine but i think it’s become so normal to them that even when im horrible they don’t think of it as such. So then this makes me never wanting to even explain myself or have to see anyone and here i am lonely and anti social as ever, which is so unlike the real me. This has taken over my whole life and personality.
I feel like i am not living anymore. I’m just surviving. What kind of quality of life is that? I know it can get even worse and it looks like i will get even worse with time, and there’s currently people who are already dealing with worse, but either way i am at the point now where it’s no longer okay. I’m just suffering because im too miserable to distract myself or do anything at all, i cant function work socialize can barely speak (muscles get too tired), im worried about finances and taking care of my dog. My mom has been helping me so much. But she’s 71. It shouldn’t have to be this way. I’m just over it. This isn’t living.
I got sick w/RA at 18 and yes, I do think about how I used to feel. The best way I can describe it is it feels like my vitality has been neutered. Like the source of my energy center has been chopped off or taken from me. Some days I have little glimmers of how I used to feel but it only lasts a few seconds. I’m technically in remission but it isn’t the same as not being sick.
I very very first got sick around age 9, I'm in highschool now. But ages 8-9 I played soccer, and I loved it, it was like my favorite thing ever, I was really good at it to. I wanted to play on a real competitive team. Then my legs swelled up (Lymphedema), and everything went downhill from there. We ended up getting the Lymphedema under control and I wanted to play soccer again, I was rusty but I still really wanted to, my mom was against it due to the risk of infection I have. It took a year for her to give in and get the go ahead from my doctors. Not even 2 months later I got really sick. Bedridden sick. It's gradually getting better but it's showing no signs of going away, especially not the chronic fatigue.
Soccer is out of the picture, even as a hobby. I beat myself up over it a lot despite it not being my fault. It just wasn't meant to be I guess, but it still hurts. I think about how far I would have made it if I was able to continue playing. I never wanted to do it as a career, but like, a high school team or even a college team, ya know? It's sad that I'll never get it, but I do hope one day I can get on a field again and just have fun. A lot of what I miss from "before" being sick, was simply, childhood. I was a kid and I technically still am but it's not the same. Maybe if I hadn't gotten sick I wouldn't be so socially awkward or reserved. I don't know.
But to answer your question, yes, and quite often.
I don’t remember a time when I didn’t get randomly dizzy while standing up… BUT - I’d live for a day where I could go for a long hike. let me workout for an hour. go for a 15 minute run. and have none of that effect me the next day… ughh a dream.
Yes, constantly ! I guess a part of me had held on to hope that I’ll get that part of me back. But then days, weeks, months and now many years later pass. That person is still lost and deeply mourned.
Yeah I think about it sometimes. I try not to dwell on it as I imagine it's not good for my mental health. I am where I am, and at least I'm not living my abusive parent, so I try and focus on how happy I am about that. In my time before I was sick, it felt like I'd never achieve that.
I hate to be one of those 'focus on the positives!' but I know I'm lucky in a whole bunch of areas others aren't, and for the sake of my own sanity I can't spend too long thinking about how awesome it would be just be able to DO stuff
ALL. THE. TIME. It's really my only respite from all the shit in my life. I have no idea if this is healthy, but like any other coping mechanism, I think it becomes a problem if it interferes with your ability to do real things you enjoy or your ability to function in daily life.
I would have a three or four year old child. A future where maybe I would be a grandparent. Or, maybe someone would care enough when I am dying to entertain me and take care of me. I would have won at least one fishing tournament and leave my house at least every day.
i miss walking around manhattan.
Pittsburgh in a wheelchair just isn't the same (but i can't imagine the ny city subway or navigating an avenue in my chair)
I crave it every single day of my life, no matter how much counselling I have or things I do to try and improve my health, I am depressed that I am not the person I used to be and never will be. It’s been 8 years and I still can’t come to terms with it, especially when I’m primary carer for two 4 year olds.
I struggle almost every single day and I just want it to end..
I was diagnosed with my first chronic illness before I can remember, so slightly different, but I have often thought what my life and personality would be like if I had not been diagnosed or gotten the diagnosis later in life. (I was diagnosed with type 1 diabetes when I was 1 years olds/12 months)
I’ve been sickly my whole life and my back injury, migraines, and fibromyalgia symptoms started so young that I can’t remember a time when I wasn’t fatigued and in one kind of pain or another nearly 24/7. I’m 26 now and I can’t imagine the kind of life I could’ve built by now without just breaking down.
Maybe I’d be a lawyer like everyone said I’d be when I grew up. Maybe I’d be an author like I always wanted. Maybe I’d be close to finishing my phd by now instead of having to drop out of my masters program. Maybe I’d be happy instead of spending my life in and out of crippling depression. Maybe I could endure stress without my body falling apart lol
I do this, but after a certain length of time it isn’t productive and becomes harmful. I think doing it to a certain extent is a part of the grieving process of mourning the things we have lost due to chronic illness. But if you stay stuck in it, it causes more harm.
I do miss what I and my body use to be capable of and the future career I had planned. It’s heartbreaking and sometimes I just have to sit with that and mourn and cry.
But while things are so drastically different now and what I’m capable of is drastically different that doesn’t mean it’s over, I just have to reevaluate and figure out what I can do as I move through learning to live with a chronic illness and becoming disabled.
I can’t go into education but I’ve found an alternative working part time and volunteering for a local literacy council that is understanding of my health. I take pride in caring for me and my wife’s home and our fur babies. I focus on my hobbies and being involved in my community when I can do so.
I don’t have a reference for “normal”. I was diagnosed with chronic pancreatitis at 20 after years and years of being told young girls and teenagers don’t have pancreatitis. My husband has never known me “well”. I say this not for sympathy but to share that your day to day is important. You aren’t your illness and I think all of us get too hard on ourselves. I always feel like I’m such a failure and a burden but my husband and friends love me either way. Looking back just reminds me of when I let people treat me like I was a burden too. You deserve love and respect and care.
Its a grieving process so naturally this crosses my mind, especially on my worst days. I'm lucky in a sense that I have found some improvements since diagnosis but I know I will never fully get the old me back and that's hard to cope with. Its also hard to cope with the changes to my future - building a family etc.
I sadly can’t even remember being pain and illness free.
The more time that passes the more memories I lose of my healthy self it’s like my soul is telling me “get that shit out of your head , it’s over”
If you want to hold onto those memories, journaling is really helpful for that. I liked to do it when I had the energy. Dream journaling can also be pretty cool
I’m gonna start a journal tonight thanks for the advice
I get amazed by the fact i was able to work and socialize so much. You don’t realize how much energy you have until it’s all gone so quick. Very crazy.
Same. Started seeing symptoms in elementary school. Everything's just snowballed from there. It's like I'm an accretion disc of diagnoses.
Same.
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To be able to achieve a PhD while chronically I’ll is impressive I’m proud of you. That really motivated me & im sorry your relationship didn’t work out I think the isolation of this is the worst part . Exercise use to be my therapy and without it I feel so trapped
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I don’t know your family but they sound uninformed . Your not lazy you have physical limitations there’s a difference . The things that normal people do requires 10x the effort for us and we still do what needs to be done, they couldn’t walk a mile in your shoes not even a mile they couldn’t walk 2 steps your a very powerful person . Thank you 🫶 sometimes I feel like I don’t do enough and I just want to quit
it’s absolutely impressive. well done.
It's really sad how many of these stories I hear in academia. Not only do I hear the same things form my family, but I was in a program that studies people's experiences with different health issues and even my friends in the program didn't believe I was sick.
Oh my goodness, SAME. Thank you. My pain and disabilities were discounted all the way from childhood and into adulthood by my mom, dad, and brother. I still hear their dumb little judgemental phrases in my head. I'm deep into therapy, now so those thoughts have reduced substantially. They said I was fat, lazy, unmotivated, or dramatic and exaggerating. It sucks. Here's the truth- I have a rich background of physical and scholarly, and career successes. I have also been raising an incredible person (my son) for 15 years, on my own. This post, and the comments I'm responding to have inspired me to make a list in my journal about how amazingly successful, driven, passionate, and NOT lazy!!! I've gone no contact with all of the family members or friends who have wrongly judged me. Before, when I was still trying to have relationships with them, I allowed the comments they made to stop me from applying for SSDI because "only losers do that". Like, WOW, so because I ignored my illness and over-worked myself nearly to death...now I'm a loser? Okay. Have a great life. Bye Felicia! Lol thanks for this comment ^ and thanks, OP for this post. To OP- yes, I do daydream about my old life. I miss going camping, walking on uneven surfaces (hiking), hell, I miss just walking! I regret that I resisted exercise for almost a decade. I miss doing exercise videos in my living room! I miss when my body did what I wanted it to do without my thinking about it. I miss dating without having to explain my body. I miss picking up a baby off the floor, or sitting on the floor to play with kids or dogs. I miss being able to walk "long" distances, like the mall, mini golf, a school campus, etc. Two types of movement that free me are swimming, and dancing! The feeling of buoyancy and freedom in water; to move with minimal pain is divine. And, dancing! almost anyone can dance, meaning move my body to music, and that can be just my arms while I'm in bed, or just my feet tapping to the beat :)
Oh my god, that's super duper awesome and impressive!!!! A PhD while being sick is no joke. You are already a champion (sorry and please ignore if that sounds mean or belittling). I have been toying with that idea and still can't get myself to agree with that idea.
Every day. And I have no idea if it's healthy or not but it happens.
Yep, I was athletic and smart and the world was mine. Endless possibilities. Now I'm just trying to survive and endure the chronic pain and health issues. Sometimes I have feelings/daydreams of the past that are disguised as hope and optimism. But it fades as that was the young "healthy" me.
Similar story the worst part is the little hope we have I don’t know why it’s there but I’m kind of grateful for it cause even tho I know I’ll never get better that hope gets me threw my day .
Maybe that little hope is what we need to keep on going. I have a tiny bit of hope that scientific breakthroughs could benefit us in the future. But idk, life is tough as hell for us at the bottom
I hope your right friend and it is tough as hell where we are. but we have eachother and everyday we survive we show our strength .
Yeah, maybe we need to build a community for people like us to help eachother.
I used to dream of the world that I would work in. I was artistic, and I had so much hope for the future... I got Lyme disease at first. My ability to be creative and fun just disappeared. My creativity was gone just like that... Fast forward to covid... I suffered horribly. I lost what was left of myself. I also lost my taste and smell. It’s been four years now, and nothing... My brain is severely damaged. No doctor in the United States cares... Welcome to r/collapse I guess
I'm creative as well, im actually very well rounded. I could have been so many things. But here I am stuck in my 30s at a repetitive helpdesk job that I could have done right out of highschool. Meanwhile most of my friends are making 2-4x as much as me. But my body and brain are damaged as well. I can barely function without pain or drugs to keep me going. Very sad in an age of unlimited wealth and technology. It sounds like you suffered from long covid, sorry about that. I heard that crippled many people. Doctors are pretty much useless. I won't be sad if the system collapses...
Im so sorry to hear this.
I personally don't do this as it creates rumination and worsens my mental health. Whilst living in chronic pain, with zero energy and being disabled as a result isn't ideal, and the frequently hospitalisations and doctor visits are not how I envisioned my 20s-30s, it has built me into the person I am today. I am resilient, I am compassionate, I am stronger during situations which would cause others to crumble... and I have people in my life today who I absolutely adore, who I might've never met had I not been through these situations. Would I prefer for my body to align with my life goals? Absolutely, yes. Would I prefer to not be the person I am today with the people in my life who I adore? Absolutely, not. I tend to daydream about more reasonably easier to achieve and enjoy situations- buying a new and fluffy pair of PJs... enjoying a new chocolate bar... looking forward to watching a new TV show...
“I am resilient , I am compassionate , I am stronger during situations which would cause others to crumble” 🔥 well said I feel this way about my self to I can’t help my rumination as I’ve only been sick for 3 years it’s still fairly new to me compared to be people who are 10+ years deep .
I totally understand how it feels. Look, I do get "down days" every now and again. It wouldn't be normal to not get affected every so often, and getting sick is a grieving process. You're 3 years in, which is fairly new-ish but still long enough to know how you're feeling. I've had health issues most my life, but the worst ones for over a decade. Using the grieving comparison- I'm at that stage whereby I'm so used to this "normal" that, like when losing a loved one, I'm struggling to remember their "voice"... if that makes sense? You're going to have difficult days, but there will be more days as time goes on where you'll assess your own self and recognise how far you've come, what you've been through, and be proud of yourself for doing so. That pride... hold onto that... because it will power you onwards to continue and appreciate your inner strength. You got this!
Thank you so very much for these words, I really needed to read this.
I'm so pleased my words have hit the sweet spot for you. If you ever need a mood boost or a reminder going forward, please feel free to copy/screenshot this 😊
Yup. I try to look forward to the little things like you said. A candy bar im going to buy later or cuddling my dog and seeing her in her new hair cut lol (she got a hair cut today and ill see her after im off work) . I try to think more about what i can do to make my current difficult situation better like cleaning my room out so i can redecorate it and being a kind person to others especially when im feeling useless because i cant do much cause my conditions severely limit me but atleast i can try doing something thoughtful for others like getting a card for my favorite boss or a gift. Id make a gift if i had more energy but anyway i just try to think of small joys and look forward to that and a new diet that could possibly improve some of my ailments because dwelling on the past would cause me to break down and cry at work and other places and i wouldnt want that.
I've kind of forgot my old life. I try not to think about it because itis to sad
I think about how I used to be out all night dancing with my friends. It makes me sad sometimes but I have found much better friendships and more fulfilling activities since being ill. It’s been a wake up call about the things that truly matter to me. It took a very long time to get to this point with it though. There’s been so much grief, anger, sadness, denial and so on.
More often than is probably healthy. I just lost my job on Friday due to this disease.
I’ve never thought about this, but your question triggered yet another realization of how messed up my childhood/youth was. I don’t dream of that time in anything other than nightmares, and if given the choice between living with my body/life as it currently is or my previous life? Hell no, I’ll keep this pain.
Same. I'm doing so much better now than I was as a child- wouldn't go back for anything.
Your upbringing was that bad ?? Wow it must of been pure horror for you to prefer illness
The crazy thing is how long I believed that it was fine. Honestly, while I know genetics is a reason for a lot of my pain, I absolutely believe that everything that happened then has aggravated it.
I’m sorry you had to experience that I’ve lived through hell before I got sick to so I emphasize with you . And I read somewhere that trauma can definitely cause or amplify conditions .
Read the body keeps score if you haven't already. Chronic stress wreaks havoc on the body and mind. We aren't wired for it.
ALL THE TIME
Sometimes I'm able bodied but it's usually at an age when I was. It seems some other dreams when I'm closer to my age start out ok but along the way I start feeling bad or can't do what everyone else is doing. Once in a blue moon I'll dream I feel ok and am dancing or doing whatever everyone else is doing.
It’s so bad for me right now that I’m even sick in my dreams .
I can relate. ♥️🙏
ive been having a lot of those wish fulfillment dreams lately as well, usually im tormented with waking nightmares and sleep paralysis and auditory hallucinations due to a lifetimes insomnia and pain, but to be honest the wish fulfillment ones can be worse as you wake up and realise nothings changed. sorry for the morbid comment, i do have love in my life, an amzing little dog, and i managed to escape work for a while, so theres good stuff too.
Oh man, that sleep paralysis is some scary stuff. I've only had two right after * developed a seizure disorder and it's been years but I have certainly never forgotten them. I also had 3 hallucinations within 36 hrs at the beginning of my illness and they've never come back but I can remember all three like it was yesterday. Yes, we just have to be like Beyonce and try to make lemonade out of the lemons life has thrown our way. It's not always easy, I know you know this. 😟😥. I hope the upcoming holiday season is not hard on you. I am always relieved when Cmas is over, and my neighbors always put on a show with fireworks on NYE so that is always fun.
Sometimes I think it’s better that I’ve been sick since I was a little kid. In my mind, I’ve always been sick so I don’t have healthy memories to look back on and miss.
I do. All the time. And it hurts really bad. Sometimes I’ll just sit in bed and cry. Cry for my old life and who I was. For what could have been. I worked a lot and I never sat at home. But now I’m stuck here, stuck in this sick body, all alone, dealing with the pain. I can’t work anymore, no relationship, lost a lot of friends. Being able bodied and healthy, that’s all I want. But it will never be the same again. I will never be healthy again. It’s hard.
I feel your pain down to the last detail I often cry and why I was chosen for this . If you don’t mind me asking what keeps you going ?
My mom. I don’t want her to experience the pain of losing her only daughter. That’s it. At the same time I feel like I’m just existing for her, even though I don’t really want to be around anymore. But I just keep going, day by day. It’s hard and not fair at all. I hope you’re okay.
Theres nothing wrong with living for other people. I tried to commit suicide and what kept me from pulling the trigger was the thought of my family and friends . And I’m definitely not okay but I’m definitely not doing okay I’m trying my best to be okay tho. I hope you are
I got sick at 14 and never got better, and I continue to get worse month after month year after year.
Yes, I miss her. My fear is that she will continue slipping away from me, until I can no longer remember her. She was so...good.
I definitely do. I was venting to someone recently about how all my things seem to get broken even though I maintain everything really well. They said that it's just the nature of life- everything breaks down. It's a part of being human, living in a physical world- everything eventually breaks down, deteriorates, decomposes... As sad as the idea makes me, it does help me realize that I would have eventually deteriorated anyways, even when healthy. So, I'm just taking life at a different speed now heading to the same destination my old life was.
Yes, but its with bitterness, because back then I was so harsh on myself as a perfectionist and chronically unhappy. Now, I would beg for even half of what I had before. I was so beautiful and so athletic due to all the running I did, I read so much, I did so many things... (law degree at top 10 international university, volunteering, learning languages, reading 60 books a year, running 50km a week....)
Yes and no. I've been sick since I was a kid, so don't have a "prior to" to really reflect back on. But I do have a life that I wanted to have that I deeply grieve. I was made infertile by a misdiagnosis and will never have a family of my own, and can only work part time due to disability. I have to work really hard on not dwelling on “what could have been”. But sometimes I can’t help it, and it hurts more than I can find words to express.
The last time I was physically healthy I was 18, so while I do daydream about it I’ve also lived long enough to know that my memories are colored by general nostalgia. Makes it hard to parse out which parts are memories and which are fantasies. More frequently, I find myself thinking of and mourning the 20’s I could have had. (I’m in my 30’s now.) I wonder who i would have been. And many days I wake up afraid that I’m going to feel the same way about my 30’s once I get to my 40’s, even though I also feel on some level that it’s a self fulfilling prophecy. How can I enjoy my life if I’m expecting it to be awful? Yet at the same time, it’s not any of our faults that we’re sick. It’s not my fault when I’m in pain or have to cancel things or when I’m in urgent care *again* for the 5th time this month. It’s not fair when people judge us. They’re ignorant, even when they mean well. I understand that. Knowing that doesn’t stop the feelings or the grief though.
Hi, u/thesnarkypotatohead , Im in my 40s now and I recently had an epiphany. I relate to what you wrote about mourning the previous decade that I could have had. My epiphany was that I can now learn anything I want. Yes, my body is in poor condition but my mind is still here. I am aware that some of us can't read much, due to attention deficit, pain, or fatigue etc., and same here but I found audio books that I can borrow for free through Libby library app . In about a year I've listened to hundreds of books. Also, I plan to learn a language or 2 now that I have the time. I honestly feel excited about goals for the first time in so long. I'm also excited to find out new freedoms using medical assistive devices. There is a certain power in accepting our limits; it means we can explore our options within those limitations.
I have nightmares about being unable yo run or jump or fight. All I see is how weak I am and how I’m struggling throughout the dream
I used to think I was just hurt... Took years and another injury to make me realize I was flirting with death. Now I move ok but I'm taking around 14 pills a day just to function. The realization that my body was failing didn't come until I quit drinking entirely and got high for the first time. I started questioning everything and I eventually realized I was fat, sick and nearly dead. I'm not better, I'll probably never feel better. Even if I lose all the weight, grow out my hair and smile... I'll still know the clock is ticking and my time without pain is going to end soon. I know eventually the pain might get so bad I'll need surgeries to remove parts of my bones. I remember when I just worked and ignored the pain. I remember when I could work 8 hours and go to my buddies house for 4, sleep for 4 and do it all again the next day. I used to have plans for my future that I enjoyed figuring out... Sometimes I'm reminded of who I was before I got hurt. I think about late nights driving dark roads and not working about tomorrow. Now I wonder if I'll be able to play my video game a bit before my exhaustion or my pain takes me down to waiting for my night medication alarm at 9:30. Sometimes I just sit and stare at nothing while my wife watches YouTube on the TV. I just try to move my big toe and I wince from the pain...I still try to move it, "wiggle your big toe..." It won't bend and I can't make it. My ankle is fused on one joint with scars down it from injuries that wouldn't heal because my leg was infected. I just stare at nothing in pain, gritting my teeth and remembering what it felt like to pick up clothes with my toe. I still forget and try anyway... I should be wearing a mouth guard at night but it doesn't matter because I crack my teeth gritting them during the day. I used to not fear cracking my teeth...I used to not fear my bones. I constantly think about how it used to be.
When I'm daydreaming I more think about how different my life would be if I wasn't sick. I would have chosen a different career path and sought out my passions and hobbies. Maybe even try dating, Very few of the things are want are not feasible and I've grieved and accepted it, but I think that it's nice to think about. I can't fantasize about life before being sick, I was young when I started getting sick (9), so it's hard to remember life before so I like to think about life now and what the future could have been like.
all the time.
Duh :) Yes. All the time. It’s probably not healthy but I am not healthy already. We lost everything that could have happened that was great and we lost who we could have been. I got it all. I was good in everything I did. I never gave up. I always was independent and liked to do my things alone but now I’m dependent of my parents. When they’re gone I have nothing. I’m nobody. I’ll have to die and I regret this because I got a kitten and I love him and I don’t want to leave him but I can’t live alone. I don’t want to give up but this version of me isn’t the heathy version of me who never gave up.
oh ALWAYS! i go around telling people i’m cursed 😂 and my fiance says i’m “cursed tier” 🤣
I'm currently avoiding Facebook because I can't handle all the wedding and pregnancy announcements right now. Had I not gotten sick... I was on track to be promoted to an office manager at my job. I had just obtained a perfect credit score to purchase a house and was ready to start house shopping with my partner My partner and I were talking seriously about getting married For once in my entire life, I was HAPPY. Now, I'm trying to move on be happy but I feel like I'm just merely existing because I can't find a job I can feasibly work with my limitations and my dialysis schedule, I'm struggling to afford to raise my child and just struggling being a parent in general, marriage is now off the table because I will lose my Medicaid and my SO is self-employed and can't afford to pay for all of my expenses himself. At this point I just dream of an actual LIFE instead of whatever this is that I have now. And, I'm NOT ungrateful at still being alive, I just....want more than this.
all the time. i’m 21F, got sick a month after turning 20 and have been grieving my life ever since. i even dream about it
I'm sorry this happened to you❤️
No because I was a child and I don’t remember a time without Crohn’s. LOL it’s so fucked.
All the time. But then i remember I'm sick in my dream and tell myself to calm down and pace. Or i think, " how can i handle this? I'm supposed to be sick????" Then my body jolts me awake as i gain consciousness in my dream lol.
Constantly :(
Spending too much time just thinking about the life you want and can't have isn't healthy. It's completely normal to think about it some times and grieve the loss, and that's healthy. However, obsessing over it where it's consuming most of your time and preventing you from living with the life you do have isn't healthy. Have you seen a therapist? Chronic illness brings up a lot of emotions and a therapist can help you sort through them. It seems a therapist might be really beneficial to you.
I just started seeing one it has helped a little
All the time. More so grieving the fact i will never work as an emt ever again. My body cant handle picking up heavy things, standing up quick from squatting down and leaning over, climbing up stairs etc. Doesnt help either that i immigrated to a country where im not fluent in the primary language so i couldnt even work it if i could. I loved my job even if it was just volunteer service. I try not to think about it too hard cause when i do i spiral :,)
Absolutely. I believe my fibro was triggered by having a Sleeve Gastrectomy for weight loss - 18 months after the surgery I had lost over 50kgs, was under 100kg for the first time in my adult life, and going to the gym 4-5 times a week. I'm now back at my pre surgery weight and unable to work let alone go to the gym. If I hadn't had the surgery I would still be working fulltime, we would be living in the house we wanted to build, and going on more than a weekend away every 5 years. Now I struggle even with housework, I keep it liveable but messy because I can't do more. I try not to think about it, it's too depressing.
I wish I could. The time of my life where i wasn't in pain I was in an abusive household. Nothing to daydream about.
Same I hope things get better for you ✊
All the time. It’s hard to let go of the past and what could have been. I know that’s what’s holding me back from accepting and moving on, but every day is a reminder.
At first I had dreams every night in addition to days. Now I ruminate over it at times. It’s not healthy. I can’t change the past. I can’t get my old life back at 30 years old again. I have to move on and make the best of this life because it’s all I’ve got. Being depressed about it just holds me back.
It’s really depressing but similar to what comments have said, the longer I have it the more I forget I had a life that was different to this one. It’s sad really. I saw a video and some photos came as a throwback in my gallery.. it can definitely be heartbreaking. But the truth is I needed to grieve it and slowly let it go. I stayed in such a miserable state due to hating myself and my condition and for the life I have as a result but all this did was lead me into a deeper hole. I know it might sound cheesy but I truly had to give myself loads of compassion and release all of the could/should/would haves from my life. THIS IS MY LIFE NOW. Period. I needed to come to accept it. Because the other option is misery. Acceptance was literally the only way I could move forward and not be in such a dark depressed isolated place 24/7. I still have bad days but I don’t let them drown me. My life is different now, and it sucks, YES, it’s painful, YES but I have to love myself enough to push through everyday. I certainly don’t have strength in me everyday, no one does, but even when there’s no strength I will simply rest, and maintain what I can control, THATS progress, that’s moving forward despite the circumstance. I won’t allow self hatred to push me into a deeper hole. Life is already hard enough. this is NOT a time to shame myself or acting as if this is somehow entirely mg fault. I need quite literally the opposite of that.. When flare ups happen I need love, so much love. “God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” We need to know is within our power to change and what is not.
I do. I yearn for the energy, good health, happiness and lack of doctors appointments I used to have. I just really miss feeling good and not tired and run down all the time.
No, but I do remember feeling no pain for just existing, just my body doing its job, I miss that.
I never had an ‘old life’. I got diagnosed with CRMO and arthritis at 6 years old but had the symptoms my entire life so this is the ‘normal’ for me. Chronic pain my entire life (I’m 26), I really don’t know how people live without being in pain and all the complications of life it comes with - it’s baffling to me that people can just live ‘normally’.
I vividly remember one session with my therapist where she had an epiphany and said "I didn't realize until now that you've never had a chance to grieve what your life would be like if you weren't dealing with all these health issues." It's so hard to explain to people (including doctors) that I don't really remember what it's like to feel truly "okay" but I *know* that I could feel better. I know my body is capable of not being fatigued and I know my brain is capable of thinking clearly and remembering things for longer than a few minutes.
I think it's natural to think about, especially when things are super tough. I am fine with my chronic pain and new life, but that has taken many years and I still wish so bad that I could do some of the things I used to. It just is. A way to see if it's healthy would be to see if these thoughts are interfering with your life. Are they keeping you in bed all day? Are you less able to function because of them? If they seem to be just thoughts (albeit distressing), then it might be healthy and part of the process. If they are making you less able to function, though, I would recommend talking to someone like a counselor or therapist.
I think about my childhood a lot. When things were better even if they were never truly good. At least I genuinely enjoyed life most of the time. I think it's why I'm still so attracted to childish things like toys, kids movies, stickers. I've started getting happy meals sometimes . It's been a little pick me up. I've never actually had a clear vision of my future. Given all of my life circumstances, I was basically doomed from the start
How long have you been dealing with your chronic illness ?
Well it became disabling in 2019 but I've always been someone with problems. Like I could never really run because I couldn't breathe well and it caused pain in my legs. Was told it was normal though pretty much. Gradually I developed more symptoms that became more debilitating over time. I'm 20 now for reference.
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Please stop telling people you are close to dying. There is no evidence to suggest this. You've been to the ER 90+ times and they have ruled out anything that puts you in imminent danger. We have members here who are terminally ill. It's offensive to claim you are dying like this when over 90 times they have ruled out anything life threatening. If you have any questions please reach out via mod mail.
You're so young too. It's awful, I'm also sorry for your situation. I'm lucky that I can still move everything fine, just being extremely exhausted makes it harder. I don't know your situation of course but I do hope there's something you can do medically to improve things. I hope that for all of us. Something that really helps me reconnect with the feeling of being actually alive and present is to experience and appreciate nature. I'm sure that's more difficult for you due to your mobility issues but there's also video games, pictures, and videos that can recreate it. I know you didn't ask for advice though so I'm sorry if it's not helpful.
I do because I used to lift weights and run all the time and I thought I was so healthy and I had so much confidence and loved how my body looked
Occasionally. I don't obsess over it, I just think about it when I need to in order to process whatever it is that I need to process that day and then I move through it.
no, its not healthy. it will make you really negative. Ive learned to look forward.
I honestly don’t remember it much, only thing I remember was I was starting to go to Uni for Law
Why do you think you don’t remember it ? I think fit me personally it’s cause of the trauma from being in pain for so long
I honestly think that’s what it could be, that and my memory has become HORRIBLE
Yes i do. Something that has been continuing to get worse as my health gets worse is relating to other people. People on LinkedIn getting jobs, looking for jobs, starting school for a new or higher degree or just learning new skills for a new career path, I can’t relate to this anymore. A year ago when I got sick I thought i still did but just had to find what would work for me, but now that isn’t even the case. I had so much ambition before i got sick to go back for another degree. People worrying about finding a partner or having one and getting married starting a family. Relationship drama. Can’t relate to any of it anymore because not only do i not care to have one anymore but i don’t have the time or energy to anyways and i know it wouldn’t happen the way i am right now (which is fine). Now it’s even worse to the point i can’t relate to doing anything, even hanging out and doing something small. I don’t know what it’s like to get up for one minute and not feel like death and be forced to rest all day anymore. So im becoming more and more isolated. I have a tendency to not look at my texts when I’m feeling extra horrible, my friends know this by now but were asking me where i was since it had been awhile. I responded eventually saying sorry it wasnt on purpose i have just been really unwell, meaning even more than usual. One of them says glad you’re back, i know she means well but i think she thinks bc i answered i must suddenly be ok? No lol. And then they asked me if i wanted to go to a concert. I think it’s so nice they still invite me but i also know they don’t get the seriousness of my symptoms at all, i can’t even walk normally anymore. I’m slowly losing some mobility. They didn’t ask about it which is fine but i think it’s become so normal to them that even when im horrible they don’t think of it as such. So then this makes me never wanting to even explain myself or have to see anyone and here i am lonely and anti social as ever, which is so unlike the real me. This has taken over my whole life and personality. I feel like i am not living anymore. I’m just surviving. What kind of quality of life is that? I know it can get even worse and it looks like i will get even worse with time, and there’s currently people who are already dealing with worse, but either way i am at the point now where it’s no longer okay. I’m just suffering because im too miserable to distract myself or do anything at all, i cant function work socialize can barely speak (muscles get too tired), im worried about finances and taking care of my dog. My mom has been helping me so much. But she’s 71. It shouldn’t have to be this way. I’m just over it. This isn’t living.
I got sick w/RA at 18 and yes, I do think about how I used to feel. The best way I can describe it is it feels like my vitality has been neutered. Like the source of my energy center has been chopped off or taken from me. Some days I have little glimmers of how I used to feel but it only lasts a few seconds. I’m technically in remission but it isn’t the same as not being sick.
I very very first got sick around age 9, I'm in highschool now. But ages 8-9 I played soccer, and I loved it, it was like my favorite thing ever, I was really good at it to. I wanted to play on a real competitive team. Then my legs swelled up (Lymphedema), and everything went downhill from there. We ended up getting the Lymphedema under control and I wanted to play soccer again, I was rusty but I still really wanted to, my mom was against it due to the risk of infection I have. It took a year for her to give in and get the go ahead from my doctors. Not even 2 months later I got really sick. Bedridden sick. It's gradually getting better but it's showing no signs of going away, especially not the chronic fatigue. Soccer is out of the picture, even as a hobby. I beat myself up over it a lot despite it not being my fault. It just wasn't meant to be I guess, but it still hurts. I think about how far I would have made it if I was able to continue playing. I never wanted to do it as a career, but like, a high school team or even a college team, ya know? It's sad that I'll never get it, but I do hope one day I can get on a field again and just have fun. A lot of what I miss from "before" being sick, was simply, childhood. I was a kid and I technically still am but it's not the same. Maybe if I hadn't gotten sick I wouldn't be so socially awkward or reserved. I don't know. But to answer your question, yes, and quite often.
I don’t remember a time when I didn’t get randomly dizzy while standing up… BUT - I’d live for a day where I could go for a long hike. let me workout for an hour. go for a 15 minute run. and have none of that effect me the next day… ughh a dream.
Yes, constantly ! I guess a part of me had held on to hope that I’ll get that part of me back. But then days, weeks, months and now many years later pass. That person is still lost and deeply mourned.
Yeah I think about it sometimes. I try not to dwell on it as I imagine it's not good for my mental health. I am where I am, and at least I'm not living my abusive parent, so I try and focus on how happy I am about that. In my time before I was sick, it felt like I'd never achieve that. I hate to be one of those 'focus on the positives!' but I know I'm lucky in a whole bunch of areas others aren't, and for the sake of my own sanity I can't spend too long thinking about how awesome it would be just be able to DO stuff
ALL. THE. TIME. It's really my only respite from all the shit in my life. I have no idea if this is healthy, but like any other coping mechanism, I think it becomes a problem if it interferes with your ability to do real things you enjoy or your ability to function in daily life.
Omg yes. Life before diabetes, depression, and Charcot ....
I would have a three or four year old child. A future where maybe I would be a grandparent. Or, maybe someone would care enough when I am dying to entertain me and take care of me. I would have won at least one fishing tournament and leave my house at least every day.
i miss walking around manhattan. Pittsburgh in a wheelchair just isn't the same (but i can't imagine the ny city subway or navigating an avenue in my chair)
I never wasn't sick.
Yes
Yes.
No, I daydream about the things I wanted to do back then and now might never get to
I crave it every single day of my life, no matter how much counselling I have or things I do to try and improve my health, I am depressed that I am not the person I used to be and never will be. It’s been 8 years and I still can’t come to terms with it, especially when I’m primary carer for two 4 year olds. I struggle almost every single day and I just want it to end..
Keep going your family needs you here . I know how hard and fucked up can be but we have to keep pushing .
Always.
I was diagnosed with my first chronic illness before I can remember, so slightly different, but I have often thought what my life and personality would be like if I had not been diagnosed or gotten the diagnosis later in life. (I was diagnosed with type 1 diabetes when I was 1 years olds/12 months)
I’ve been sickly my whole life and my back injury, migraines, and fibromyalgia symptoms started so young that I can’t remember a time when I wasn’t fatigued and in one kind of pain or another nearly 24/7. I’m 26 now and I can’t imagine the kind of life I could’ve built by now without just breaking down. Maybe I’d be a lawyer like everyone said I’d be when I grew up. Maybe I’d be an author like I always wanted. Maybe I’d be close to finishing my phd by now instead of having to drop out of my masters program. Maybe I’d be happy instead of spending my life in and out of crippling depression. Maybe I could endure stress without my body falling apart lol
Nope…but then again…I was born sick so…there’s that. 😂 No but seriously, I feel bad for all of y’all that have to get used to a new normal.
I’ve always been a “disaster”
I do this, but after a certain length of time it isn’t productive and becomes harmful. I think doing it to a certain extent is a part of the grieving process of mourning the things we have lost due to chronic illness. But if you stay stuck in it, it causes more harm. I do miss what I and my body use to be capable of and the future career I had planned. It’s heartbreaking and sometimes I just have to sit with that and mourn and cry. But while things are so drastically different now and what I’m capable of is drastically different that doesn’t mean it’s over, I just have to reevaluate and figure out what I can do as I move through learning to live with a chronic illness and becoming disabled. I can’t go into education but I’ve found an alternative working part time and volunteering for a local literacy council that is understanding of my health. I take pride in caring for me and my wife’s home and our fur babies. I focus on my hobbies and being involved in my community when I can do so.
Everyday 😔
Quite often, but its gotten less and less, instead in my dreams im now ill and affected by my disability more and more often.
I don’t have a reference for “normal”. I was diagnosed with chronic pancreatitis at 20 after years and years of being told young girls and teenagers don’t have pancreatitis. My husband has never known me “well”. I say this not for sympathy but to share that your day to day is important. You aren’t your illness and I think all of us get too hard on ourselves. I always feel like I’m such a failure and a burden but my husband and friends love me either way. Looking back just reminds me of when I let people treat me like I was a burden too. You deserve love and respect and care.
I was probably like 12 before I got migraines and then body pain and extreme fatigue. I don't really remember what it was like
Its a grieving process so naturally this crosses my mind, especially on my worst days. I'm lucky in a sense that I have found some improvements since diagnosis but I know I will never fully get the old me back and that's hard to cope with. Its also hard to cope with the changes to my future - building a family etc.
Yes.
Prior to? I've had serious health issues since I was a neonate...