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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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I'm going on a mission! wish me luck

notmyself

Senior Member
Messages
364
Even if you have seen 20 doctors, they don't know everything, and it takes many of us multiple tries with doctors before we find one who actually cares enough to try and find the answers. I am surprised though, that you have had a cardiovascular diagnoses and forced yourself to run; a suicide mission indeed! Please know that your body deserves care and respect and this is not it.:(
A dubios diagnostic aswell..she said that my heart is healthy and i don t have heart disease,is jsut working bad cause of chronic stress..so in the end all doctors tell me the same thing..maybe they are right, it will all get clear the next days :)
 

Pen2

Support, Good Medicine.
Messages
391
Location
Maryland, US
@notmyself , you obviously came on PR because you are already diagnosed with ME/CFS and you are looking for either more information or just help and support for dealing with how much life just changed for you and you feel miserable about it.

PR is the perfect place to find support. People who think of suicide, wonder what or how to deal with this disease. Feelings of depression, left out from usual activities.....I could go on & on.

It was only days ago I wanted to die. The feeling of who cares, nobody would miss me .....just not wanting to live anymore.

It's all lies! You are in this world for a reason no matter how you feel. You will find great support here on PR and ideas on things that bring you joy. Even people who are in great physical shape can die, none of us know when, where or how.

Meanwhile, I like to think about anything that's positive, beautiful "nature, my kids" , venting on how your feeling is good, this PR family members will be there to listen/read. We can relate! Love reading the, "ME moments" relating and laughing.

Hope your run doesn't hurt your health more. Wish you didn't do that run, but you did.....we'll all still be here on PR to support you and each other.
 

gabriella17

Senior Member
Messages
165
Location
Phoenix, AZ
As someone who has experienced psychosis, having both ME and a psychiatric disorder, I can tell you that you don't sound like you're having a psychotic episode. Unless you're hearing voices or experiencing severe paranoia (eg. you think other people are planting thoughts in your head, etc), you're not psychotic, just pissed off.

As for running, I hope you are just venting and not serious. If you think living with this is hard now, how do you think you will do after that run? You are taking the chance of having to be immobilized, bed-bound, spoon-fed for the rest of your life. Have you seen the TED talk from Jennifer Brea (see below)? If not, I would strongly recommend that you do. She shares her journey with ME. She was also told that it was in her head, a psychosomatic disorder. She, too, decided to put it to the test, by walking home from her doctor's appointment. She was in her twenties. She did manage to make it home, but that one walk knocked her over the edge to where she was bed-bound, and she was never able to get back to her pre-walk condition. So, if you are young, and are even ABLE to run, you're more fortunate than many, and you have a chance of improving.

Also, what else have you tried as far as coping strategies? No, they won't cure you, but they will have a positive effect overall, and increase your mental and emotional stamina, improve anxiety and depression, and thus improve your quality of life. You CAN take some action, you DO have some choice and control. Do web searches for coping will chronic illness. Read books (such as "How to Be Sick" by Toni Bernhard). Watch youtube videos.There are free mindfulness meditation courses online that would otherwise cost hundreds of dollars to learn in person. Fighting and hating your body is only goint to make it worse. It's not your body's fault - it's affecting your body just as much is it is affecting you, so start having some compassion for your body and start treating it with kindness.

 

notmyself

Senior Member
Messages
364
@notmyself , you obviously came on PR because you are already diagnosed with ME/CFS and you are looking for either more information or just help and support for dealing with how much life just changed for you and you feel miserable about it.

PR is the perfect place to find support. People who think of suicide, wonder what or how to deal with this disease. Feelings of depression, left out from usual activities.....I could go on & on.

It was only days ago I wanted to die. The feeling of who cares, nobody would miss me .....just not wanting to live anymore.

It's all lies! You are in this world for a reason no matter how you feel. You will find great support here on PR and ideas on things that bring you joy. Even people who are in great physical shape can die, none of us know when, where or how.

Meanwhile, I like to think about anything that's positive, beautiful "nature, my kids" , venting on how your feeling is good, this PR family members will be there to listen/read. We can relate! Love reading the, "ME moments" relating and laughing.

Hope your run doesn't hurt your health more. Wish you didn't do that run, but you did.....we'll all still be here on PR to support you and each other.
i aprecciate your words, but you see ,i ahve just 26 years,,i didin 't get the chance to have a wife and kids yet,and because of this illnes (if i have it) i will never do..If this will struck me after i have kids and a stable financial situation,i would'nt go so crazy about it.But now,just when i was building my life..how on earth i will survive,even if i want?! I have all the reasons to act crazy,i see beautifull girls and i can never be with them,cause i feel like 90 years old,how on earth i will make a family, and sustain it without being able to work..The beautifull things in life kinda suck when you are at the mercy of others for food and other stuff,also seeing all your friends getting married,having cariers and me stuck in bed for life?..i refuse this fate..is reallt not worth it.You have your kids ,of course they give you joy,you already accomplish the biggest think in life..but me what did i accomplish??
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
i aprecciate your words, but you see ,i ahve just 26 years,,i didin 't get the chance to have a wife and kids yet,and because of this illnes (if i have it) i will never do..If this will struck me after i have kids and a stable financial situation,i would'nt go so crazy about it.But now,just when i was building my life..how on earth i will survive,even if i want?! I have all the reasons to act crazy,i see beautifull girls and i can never be with them,cause i feel like 90 years old,how on earth i will make a family, and sustain it without being able to work..The beautifull things in life kinda suck when you are at the mercy of others for food and other stuff,also seeing all your friends getting married,having cariers and me stuck in bed for life?..i refuse this fate..is reallt not worth it.You have your kids ,of course they give you joy,you already accomplish the biggest think in life..but me what did i accomplish??

I have no kids. I got sick at age 13, then severe at age 16. I'm now 28. Many on here became ill when they were very young.

I met the love of my life when I was collapsing on dates, frequently in the emergency room, frequently requiring caregiving and completely unable to work.

I am not alone in this.

But the beautiful things in life are never going to happen for you if you aren't willing to seek them out. Self-harming tends to squash many chances of that happening.
 

notmyself

Senior Member
Messages
364
As someone who has experienced psychosis, having both ME and a psychiatric disorder, I can tell you that you don't sound like you're having a psychotic episode. Unless you're hearing voices or experiencing severe paranoia (eg. you think other people are planting thoughts in your head, etc), you're not psychotic, just pissed off.

As for running, I hope you are just venting and not serious. If you think living with this is hard now, how do you think you will do after that run? You are taking the chance of having to be immobilized, bed-bound, spoon-fed for the rest of your life. Have you seen the TED talk from Jennifer Brea (see below)? If not, I would strongly recommend that you do. She shares her journey with ME. She was also told that it was in her head, a psychosomatic disorder. She, too, decided to put it to the test, by walking home from her doctor's appointment. She was in her twenties. She did manage to make it home, but that one walk knocked her over the edge to where she was bed-bound, and she was never able to get back to her pre-walk condition. So, if you are young, and are even ABLE to run, you're more fortunate than many, and you have a chance of improving.

Also, what else have you tried as far as coping strategies? No, they won't cure you, but they will have a positive effect overall, and increase your mental and emotional stamina, improve anxiety and depression, and thus improve your quality of life. You CAN take some action, you DO have some choice and control. Do web searches for coping will chronic illness. Read books (such as "How to Be Sick" by Toni Bernhard). Watch youtube videos.There are free mindfulness meditation courses online that would otherwise cost hundreds of dollars to learn in person. Fighting and hating your body is only goint to make it worse. It's not your body's fault - it's affecting your body just as much is it is affecting you, so start having some compassion for your body and start treating it with kindness.



Hi ,i am sorry this person..no one deserve this..but probably she is in a better situation than me..everyone say to hang on,but without income ,hangin on is not an option..the cruel reality is that is no escape for me if i have this ilness..i can meditate and do mindfulness meditation,but this won't keep me warm and will not subsitute food ...I made the run..now i'm waiting the outcome,
 

Alvin2

The good news is patients don't die the bad news..
Messages
3,024
There are many people here including myself who went downhill suddenly (many after already being bad) and can trace it to one very stupid (in retrospect) action. This is why we are all saying don't do it, you can't undo the damage your looking to cause. Learn from our mistakes.

That said its your life and your body, but at the very least if you end up bedridden because of this make sure your affairs are in order, that you will have family who will care for you 24/7, meals, transportation to doctors and if you need a feeding tube installed or end up unable to speak or get out of bed you have left directives on what you want done. And i'm not exaggerating, there are people here who are bedridden and a few who barely communicate (and rarely post here) and those who are completely uncommunicative.
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
Hi ,i am sorry this person..no one deserve this..but probably she is in a better situation than me..everyone say to hang on,but without income ,hangin on is not an option..the cruel reality is that is no escape for me if i have this ilness..i can meditate and do mindfulness meditation,but this won't keep me warm and will not subsitute food ...I made the run..now i'm waiting the outcome,

You know, it just occurred to me: If this is all about income, then why did you go for a run instead of attempting to work? With the latter, you'd at least have some money in your pocket. Instead you just decided to go out and waste all that energy. It's very sad that you don't seem to want to help yourself in a rational manner.
 

notmyself

Senior Member
Messages
364
There are many people here including myself who went downhill suddenly (many after already being bad) and can trace it to one very stupid (in retrospect) action. This is why we are all saying don't do it, you can't undo the damage your looking to cause. Learn from our mistakes.

That said its your life and your body, but at the very least if you end up bedridden because of this make sure your affairs are in order, that you will have family who will care for you 24/7, meals, transportation to doctors and if you need a feeding tube installed or end up unable to speak or get out of bed you have left directives on what you want done. And i'm not exaggerating, there are people here who are bedridden and a few who barely communicate (and rarely post here) and those who are completely uncommunicative.
wow..scary
 

Pen2

Support, Good Medicine.
Messages
391
Location
Maryland, US
@Dainty, so well said. Don't give up. There's always hope....always.

@notmyself , you will find people that relate to your situation here.

I'm sorry for not paying more attention to what I said. I don't want to make you feel even worse :bang-head: I do care very much about everybody with this disease! But you're right we are not all the same just relate to alot. I got sick over a year ago bad anyways, lost my job, lost my horse, and many other things. We're suffering loss, just different. I so sorry, you are really down right now. Please please take care and rest.

You will hear from others you can relate more with on PR I bet.
 

notmyself

Senior Member
Messages
364
You know, it just occurred to me: If this is all about income, then why did you go for a run instead of attempting to work? With the latter, you'd at least have some money in your pocket. Instead you just decided to go out and waste all that energy. It's very sad that you don't seem to want to help yourself in a rational manner.

the only job i know..can't be done at the moment, not with the way i feel..i need this experiment to show me that im not as sick as i think..and start doing something..
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
the only job i know..can't be done at the moment, not with the way i feel..i need this experiment to show me that im not as sick as i think..and start doing something..

Why not experiment with doing the job with the way you feel, rather than experimenting with going for a lengthy run with the way you feel? Is the job more strenuous than the run?
 

notmyself

Senior Member
Messages
364
Why not experiment with doing the job with the way you feel, rather than experimenting with going for a lengthy run with the way you feel? Is the job more strenuous than the run?
it requires 8 hours of standing..and i can't be fatigued when i do it..i need to be energic and fast..
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
So...you'd rather run 20km with no income than attempt a job. And you've decided that the only job that's an option for you is one that requires you to be fast and full of energy.

I don't get it. Why not look for a less strenuous job, and try that as an experiment? Why dismiss all other possibilities and go on a suicide mission instead of working to resolve the issues that are causing you such distress? There are jobs out there that do not require you to be energetic and fast. trying one of those as an experiment would get you a lot further than going for runs.
 

notmyself

Senior Member
Messages
364
So...you'd rather run 20km with no income than attempt a job. And you've decided that the only job that's an option for you is one that requires you to be fast and full of energy.

I don't get it. Why not look for a less strenuous job, and try that as an experiment? Why dismiss all other possibilities and go on a suicide mission instead of working to resolve the issues that are causing you such distress? There are jobs out there that do not require you to be energetic and fast. trying one of those as an experiment would get you a lot further than going for runs.
i know i was stupid, this is who i am, i run to don't feel sick anymore..or for the hope that i will not see any bad repercussion ,wich unfortunatelly i alreaddy start seeing..my heart beat like crazy..so once again i messed it up big time ..
 

Pen2

Support, Good Medicine.
Messages
391
Location
Maryland, US
i know i was stupid, this is who i am, i run to don't feel sick anymore..or for the hope that i will not see any bad repercussion ,wich unfortunatelly i alreaddy start seeing..my heart beat like crazy..so once again i messed it up big time ..
Your not stupid, your just pissed off! :mad:. Don't put yourself down. Just learn from it.
 

notmyself

Senior Member
Messages
364
Your not stupid, your just pissed off! :mad:. Don't put yourself down. Just learn from it.
thanks but there is no doubt that i am stupid...i read some articles about running long distances in extreme heat,wich i just did..it can take many days even for healthy people to recover...i will probably end up tube feed from this..