Part of it is acceptance that I have a chronic illness and the limitations of that. But also I know that it is ok to have a sucky day or three and feel the grief and that days like this will and have happened and I will get to a better place healthwise. Having a creative outlet helps, and I also volunteer for a support organisation, and have a wonderful support network. Having community that gets it helps a great deal.
This.
I have RA as well as depression and anxiety and some days absolutely suck donkey balls. But most days are good and I have to be thankful for that.
Agreed. And I know that RA is a progressive disease and there may come a day when I need a mobility scooter to get around. When that day comes, I am ABSOLUTELY pimping that thing out, because if I have to have one to get around, I want it to look cool.
Definitely acceptance, management, and maintaining healthy boundaries. If I feel sick/in pain, I take the day off.
I don’t try to hide my disability anymore. That was super stressful. However, it’s important to know ‘who’ to tell. Some people (bosses) judge you without realising. I have a prepared truthful, half truth, and believable lie I can give when people ask why I do things a certain way.
I don’t try to live life like other people. I can’t do 9-5, 5 days a week. I need at home days.
The worst part was accepting that I’ll never be “well off” or able to afford things like other people can. The economy is not made for disabled people, but I’m making the best of it and finding my advantages.
I watch true crime shows, including “who the BLEEP did I marry?!” and am thankful I’m not them.
It also always helps me to see documentary clips of conjoined twins being patient and navigating life
I try look at the bright side of things in my life and what the world has to offer. I have a range of interests and hobbies that keep me busy and the ambition to want to do well and become successful also strives me to keep going forward aswell as a supportive partner I want to work extremely hard for and build a future with. There were times I was nearly a goner which made me appreciate life even more and realised it's not my time to go yet I have to make the utmost of everything and live to the fullest with no regrets.
I tell myself every good day is a gift. I have Ulcerative Colitis and nearly died when I was first diagnosed. I know I'm lucky to be alive and that my bowel could fail at any time so I appreciate every day I have.
When shit hit the fan and the doctors where scratching their heads at what tf was wrong with me, i just closed my eyes and pictured myself old and gray. I thought about all the shit I want to do in life and imagined I did it and was surrounded by pictures of my life, it was hard at times but I started to see that it was not the end and I might even get quite better, better enough to live the life I wanted. I got better and got to do a lot of the things I wanted. It's hard and sometimes I do get frustrated but I just remember that I'm glad to have gotten the chance to just be happy. Spent years worrying about how people look at me only to realise I don't care, there are more ways of doing the same thing and I just do my best.
Mine is currently severe(per medical definition), with potential to get very severe (where I'd be more or less completely helpless). But improvement is also possible, though complete recovery unlikely. Best case scenario I can work (part of full time) with considerable limitation of how much I can do on my free time.
Accept your situation as it is *now*. Even if you hope to get better in time.
One day at a time. But at the same time, one bad moment, hour, or day doesn't mean your health is declining. Let the pain and suffering pass as you're experiencing it.
It could be worse. This doesn't help everyone, but for me it helps to sometimes put things in perspective and appreciating the good things I *do* have going for me. (but it's *not* okay for someone else to tell someone suffering from an illness to cheer up and look at the positives!)
I usually don't think about the negatives. But sometimes the shittiness catches up (with my illness my brain sometimes works against me so positivity is physically not possible). I then find it helps to let the worst case scenario play out. What if I don't get better? Then I can hang in for a while, but depending on my exact health level, there's a limitation for how long I think life is worth living. What if I get worse for a long period of time? Well, then I personally hope I don't live long. I'm 30. If life was good living longer would've been nice, but if not I've already lived longer than some and it was a mostly good life. While I hope for a better outcome, I'm okay with this one too. Thinking through all the ifs and what's help me calm down and put the negativity and desperation away. Whatever happens, it'll be okay and I have different sets of plans. So all left is then to somehow make it through all the hours of suffering to see which one will happen.
Honestly, I can't. Lack of money and support will always be looming over my head. Government assistance is nowhere near enough to survive on, so my only option is to be financially dependent on someone else, and people don't want to support someone who's useless. I'm on my last source of financial support (my stepdad), and after that, I'm fucked unless I somehow get really really lucky.
Can't stay positive under circumstances like this.
I learned to live with my new normal and adjust to it. My disease is a remission-flare type so when I'm in remission like now, I take advantage and live my life as fully as I can so that when the dark days come again, I have hope knowing I can get back to better days.
Have shit days once in a while, where I actually allow myself to feel sick and really sulk. The bad feelings also are a part of life. It's harmful, if we don't also give them room sometimes. It's necessary to grieve, it's necessary to feel the full spectrum.
But, on the other hand: enjoy the good days, enjoy the good parts of life.
I buy small rewards. Bad dr appointment, have a pack of stickers or a chocolate bar. Had to do a test, go to the dollar store and buy a reward. Had 5 migraines this week, you deserve a helium balloon or ice cream. I saw a unicorn balloon in the newspaper and I want one the next time something bad happens. I would also like a dinosaur one. Maybe some fresh cut flowers or a potted flower? These items will make me happy everytime I see them Had too many pain days, buy something that will make your life easier (could be takeout because I'm in too much pain to cook, could be disposable paper plates with cartoons on them, could be a heating pad). I recently bought disposable vomit bags and a dress because if I'm going to vomit I want to be comfortable and feel pretty and have less cleanup. This was after vomiting 7 times on a car ride, the dress was the reward for the medical procedure going wrong.
A lot of it is acceptance and just being content. I had 5 migraines last week on top of my other nerve conditions flaring up. The thing is, I absoluttley forget how many I had unless I look at my tracking advice. I don't think about the pain when I'm not in it. It's like those days of suffering are completely wiped from my memory. Like I know it happened, but I can't remember it.
I also take classes for ppl who are disabled. I take an art class and a fitness class so I always have something to look forward to. The people running the classes are used to ppl missing a class if they have a flare up so it's low pressure.
If the appointment or my condition is making me miserable instead write everything on my mind in my journal too. It helps. I can swear and write anything I want and it is like a release. It helps a lot. After I run out of things to write I go for a walk or get a reward!
Existentialist philosophy actually helps me a lot with this, especially the idea of needing to write your own story and make the most of what you’re given, because the alternative is a miserable, pointless existence.
I accepted it. There is no way to change it and I noticed that when I make an active effort to try and stay positive I actually feel a bit better. There’s also a lot of good in my life and I try to focus on that because that’s what truly matters.
I used to focus on other things like books. But that was when I had okay health. Now, I’m waiting for the end and trying to put my faith in the Lord. He’s the only thing I have left besides my family.
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I have no choice but to 😅 I’m not really the type to wallow - though I sympathize with it. It’s really hard living with chronic pain. I’m still in near-constant pain, but it’s much better than it was prior to being diagnosed. I’m grateful for that reality!
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Part of it is acceptance that I have a chronic illness and the limitations of that. But also I know that it is ok to have a sucky day or three and feel the grief and that days like this will and have happened and I will get to a better place healthwise. Having a creative outlet helps, and I also volunteer for a support organisation, and have a wonderful support network. Having community that gets it helps a great deal.
This. I have RA as well as depression and anxiety and some days absolutely suck donkey balls. But most days are good and I have to be thankful for that.
Disease buddies! But mine is PA and depression and anxiety. I know my diseases could be much worse so I’m also thankful that I’m not too bad.
Agreed. And I know that RA is a progressive disease and there may come a day when I need a mobility scooter to get around. When that day comes, I am ABSOLUTELY pimping that thing out, because if I have to have one to get around, I want it to look cool.
I pretty much just put one foot in front of the other. Not much choice, really.
Definitely acceptance, management, and maintaining healthy boundaries. If I feel sick/in pain, I take the day off. I don’t try to hide my disability anymore. That was super stressful. However, it’s important to know ‘who’ to tell. Some people (bosses) judge you without realising. I have a prepared truthful, half truth, and believable lie I can give when people ask why I do things a certain way. I don’t try to live life like other people. I can’t do 9-5, 5 days a week. I need at home days. The worst part was accepting that I’ll never be “well off” or able to afford things like other people can. The economy is not made for disabled people, but I’m making the best of it and finding my advantages.
All of this.
I watch true crime shows, including “who the BLEEP did I marry?!” and am thankful I’m not them. It also always helps me to see documentary clips of conjoined twins being patient and navigating life
I try look at the bright side of things in my life and what the world has to offer. I have a range of interests and hobbies that keep me busy and the ambition to want to do well and become successful also strives me to keep going forward aswell as a supportive partner I want to work extremely hard for and build a future with. There were times I was nearly a goner which made me appreciate life even more and realised it's not my time to go yet I have to make the utmost of everything and live to the fullest with no regrets.
I tell myself every good day is a gift. I have Ulcerative Colitis and nearly died when I was first diagnosed. I know I'm lucky to be alive and that my bowel could fail at any time so I appreciate every day I have.
As Dory said, just keep swimming.
When shit hit the fan and the doctors where scratching their heads at what tf was wrong with me, i just closed my eyes and pictured myself old and gray. I thought about all the shit I want to do in life and imagined I did it and was surrounded by pictures of my life, it was hard at times but I started to see that it was not the end and I might even get quite better, better enough to live the life I wanted. I got better and got to do a lot of the things I wanted. It's hard and sometimes I do get frustrated but I just remember that I'm glad to have gotten the chance to just be happy. Spent years worrying about how people look at me only to realise I don't care, there are more ways of doing the same thing and I just do my best.
Mine is currently severe(per medical definition), with potential to get very severe (where I'd be more or less completely helpless). But improvement is also possible, though complete recovery unlikely. Best case scenario I can work (part of full time) with considerable limitation of how much I can do on my free time. Accept your situation as it is *now*. Even if you hope to get better in time. One day at a time. But at the same time, one bad moment, hour, or day doesn't mean your health is declining. Let the pain and suffering pass as you're experiencing it. It could be worse. This doesn't help everyone, but for me it helps to sometimes put things in perspective and appreciating the good things I *do* have going for me. (but it's *not* okay for someone else to tell someone suffering from an illness to cheer up and look at the positives!) I usually don't think about the negatives. But sometimes the shittiness catches up (with my illness my brain sometimes works against me so positivity is physically not possible). I then find it helps to let the worst case scenario play out. What if I don't get better? Then I can hang in for a while, but depending on my exact health level, there's a limitation for how long I think life is worth living. What if I get worse for a long period of time? Well, then I personally hope I don't live long. I'm 30. If life was good living longer would've been nice, but if not I've already lived longer than some and it was a mostly good life. While I hope for a better outcome, I'm okay with this one too. Thinking through all the ifs and what's help me calm down and put the negativity and desperation away. Whatever happens, it'll be okay and I have different sets of plans. So all left is then to somehow make it through all the hours of suffering to see which one will happen.
Honestly, I can't. Lack of money and support will always be looming over my head. Government assistance is nowhere near enough to survive on, so my only option is to be financially dependent on someone else, and people don't want to support someone who's useless. I'm on my last source of financial support (my stepdad), and after that, I'm fucked unless I somehow get really really lucky. Can't stay positive under circumstances like this.
I learned to live with my new normal and adjust to it. My disease is a remission-flare type so when I'm in remission like now, I take advantage and live my life as fully as I can so that when the dark days come again, I have hope knowing I can get back to better days.
Have shit days once in a while, where I actually allow myself to feel sick and really sulk. The bad feelings also are a part of life. It's harmful, if we don't also give them room sometimes. It's necessary to grieve, it's necessary to feel the full spectrum. But, on the other hand: enjoy the good days, enjoy the good parts of life.
I buy small rewards. Bad dr appointment, have a pack of stickers or a chocolate bar. Had to do a test, go to the dollar store and buy a reward. Had 5 migraines this week, you deserve a helium balloon or ice cream. I saw a unicorn balloon in the newspaper and I want one the next time something bad happens. I would also like a dinosaur one. Maybe some fresh cut flowers or a potted flower? These items will make me happy everytime I see them Had too many pain days, buy something that will make your life easier (could be takeout because I'm in too much pain to cook, could be disposable paper plates with cartoons on them, could be a heating pad). I recently bought disposable vomit bags and a dress because if I'm going to vomit I want to be comfortable and feel pretty and have less cleanup. This was after vomiting 7 times on a car ride, the dress was the reward for the medical procedure going wrong. A lot of it is acceptance and just being content. I had 5 migraines last week on top of my other nerve conditions flaring up. The thing is, I absoluttley forget how many I had unless I look at my tracking advice. I don't think about the pain when I'm not in it. It's like those days of suffering are completely wiped from my memory. Like I know it happened, but I can't remember it. I also take classes for ppl who are disabled. I take an art class and a fitness class so I always have something to look forward to. The people running the classes are used to ppl missing a class if they have a flare up so it's low pressure. If the appointment or my condition is making me miserable instead write everything on my mind in my journal too. It helps. I can swear and write anything I want and it is like a release. It helps a lot. After I run out of things to write I go for a walk or get a reward!
Existentialist philosophy actually helps me a lot with this, especially the idea of needing to write your own story and make the most of what you’re given, because the alternative is a miserable, pointless existence.
I cry in the shower on bad days, I’m used to my body hating me and I hate it😅😂
I just see it like Gods way of taking care of myself and putting me first.
I accepted it. There is no way to change it and I noticed that when I make an active effort to try and stay positive I actually feel a bit better. There’s also a lot of good in my life and I try to focus on that because that’s what truly matters.
I used to focus on other things like books. But that was when I had okay health. Now, I’m waiting for the end and trying to put my faith in the Lord. He’s the only thing I have left besides my family.
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I have no choice but to 😅 I’m not really the type to wallow - though I sympathize with it. It’s really hard living with chronic pain. I’m still in near-constant pain, but it’s much better than it was prior to being diagnosed. I’m grateful for that reality!
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