It's worth living like this?

[msf]

I would prefer the victory of having survived ME, but I understand your point.

 

[Hell...Hath...No...Fury..]

Is it worth it? Some days yes very much so.
During the many moments when it isn't, I just remember the days when it is and use the bad days to appreciate the good ones knowing there'll always be another at some point.

I don't even think about all the good research and progress being made right now to keep me going. It barely even registers in my mind.

Just remembering the sheer elation and relief at the end of each bad crash or wall of pain is usually enough for me to keep plodding on.

To the people who believe we are what we do, I used to be one of them. I feel sad that their job title defines who they are. Most of us on the other hand are now free to be so much more than a job title. We aren't restrained by those definitions. Healthy people rarely have that luxury, so we're lucky in some ways
I can't believe i just described us as lucky. I'm sure that sentence will bite me in the ass in the not too distant future

 

[Marigold7]

Is it worth it? Some days yes very much so.
During the many moments when it isn't, I just remember the days when it is and use the bad days to appreciate the good ones knowing there'll always be another at some point.

I don't even think about all the good research and progress being made right now to keep me going. It barely even registers in my mind.

Just remembering the sheer elation and relief at the end of each bad crash or wall of pain is usually enough for me to keep plodding on.

To the people who believe we are what we do, I used to be one of them. I feel sad that their job title defines who they are. Most of us on the other hand are now free to be so much more than a job title. We aren't restrained by those definitions. Healthy people rarely have that luxury, so we're lucky in some ways
I can't believe i just described us as lucky. I'm sure that sentence will bite me in the ass in the not too distant future

Well said and thank you.

 

[Alexandra90]

I'm 27. I can relate very well to your thoughts. The feeling of isolation is brutal, but at the same time being around healthy people can be even more depressing. That sounds horrible to say, but it's not because I resent their health, but it feels like watching everything I miss out. I get sad hearing and seeing "the real world". I feel like I'm living in another world. Now when it's summer here it's even harder.

Sounds strange maybe.. But know your not alone and there is hope . Maybe we recover or maybe the researchers find a treatment.

Sorry for bad grammar I'm swedish and writing from my phone.

 

[IThinkImTurningJapanese]

I am not very patient although I should be but unfortunately not

I don't think you should be patient. I see impatience as an obvious response to an intolerable situation.

If you can just use it and find some sort of relief NOW that would make this more bearable.

Then the waiting for a treatment, a cure, will be much easier.

 

[Marigold7]

I don't think you should be patient. I see impatience as an obvious response to an intolerable situation.

If you can just use it and find some sort of relief NOW that would make this more bearable.

Then the waiting for a treatment, a cure, will be much easier.

Disagree as impatience takes up a huge amount of emotional and physical energy and achieves nothing. finding pleasures and joys where and how we are now is a great thing. Patient means more than you think it means.
No situation is intolerable unless we allow and help it to

 

[eric_gladiator]

@esther12
I guess you're right though the pressure does not do this right.
Thanks for your encouragement

 

[eric_gladiator]

@Helen

I suppose he is right but I am not very positive with this, it has been a very big change for me a few months ago, I also think that I will not have too long the support of my family

 

[eric_gladiator]

@ Trishrhymes @ Erin @ Hilary @ AdamS @ arewenearlythereyet @ valentinelynx @ gabriella17 @ Marigold7@Alexandra90 @MSF

I try every day to cope with it but it is the life of a young person who has to spend long hours in bed, has difficulty walking, feels pain for different parts of the body, has to give up a job, plans with his partner .. A few months ago I never expected this or had no idea how serious. I just like my head day by day thinking if I could go back and not have led that life so excessive that I was devouring everywhere that I think led me to this state. This disease very few people understand it, I feel like somebody strange and I always try to pretend to be well but sometimes it is difficult.

 

[Helen]

I suppose he is right but I am not very positive with this, it has been a very big change for me a few months ago, I also think that I will not have too long the support of my family

I do understand that it is a stressful and worrying time for you. It surely doesn´t help you, but we have all been there. Luckily you came into this at a time when research from many groups is very, very promising. We don´t know which one will be first to come up with a treatment. All the best to you.

 

[eric_gladiator]

How can I find out why I get infected? I all I remember is to be very stressed and one day to get out of bed as if I had the flu and then diarrhea that with the weeks passed

 

[eric_gladiator]

@Helen
Thanks for your encouragement, people are appreciated.

 

[Esther12]

A few months ago I never expected this or had no idea how serious. I just like my head day by day thinking if I could go back and not have led that life so excessive that I was devouring everywhere that I think led me to this state. This disease very few people understand it, I feel like somebody strange and I always try to pretend to be well but sometimes it is difficult.

If you've only been ill for a few months, you are much more likely to just naturally recover. Some people do report problems with 'burnout' that can last a few months to a couple of years, with gradual recovery as they take time off and let themselves relax. Even this can be really difficult to live with though. It's possible you will have something more long-lasting, but at this stage of illness you are in the group of people more likely to improve. Fingers crossed for you.

 

[tudiemoore]

Note on my refrigerator---
"My story isn't over yet"

Author Unknown

 

[invisiblejungle]

I'm not 30 yet, and I already feel like I'm 80. I have a hard time walking, I make a very sedentary life. The real thing is that I no longer know what it means to have this life depending on my parents, without anyone understanding you, without economic support, without medical support ... and just to see other people how they make their lives, the really easy That they find to do the life and I meanwhile sunk in this misery of disease

I'm 33 myself. Is it worth living like this? Sometimes I don't know! But I just want to say that you should never try to fight these types of emotions. There's nothing "wrong" with them. I think it's extremely important to allow ourselves to sink into the darkness, to simply feel the absolute rawness of the situation.

One of my old friends, who is autistic, asked me if I ever thought of euthanizing myself. I told him I did, and he just nodded his head in understanding. That meant so much to me. He was the first person who let me just express myself without judging me. Everyone else says things like, "I would be so sad if you did that!" Or "Suicide is for the weak. You have to keep going!" I know they mean well, but we really need people who will give us space to just be who we are, even if it's not so pretty.

 

[TiredBill]

@eric_gladiator I don't know how far into the disease you are, but when was 26 I was flattened. At the worst, life sometimes looked quite dismal. After 33 years living with CFS, I'm glad I hung in there.

Life got better for me. I hope it does for you too!

Bill

 

[Pen2]

@eric_gladiator While I can't know exactly what you're going through, I've struggled with thoughts of suicide. I think one of the most important things that helps is to have a good support network - support groups, counselors, etc. If you are able to find even just one person who can listen and validate how you're feeling instead of judging, one person you can just turn to when you're feeling completely alone, someone who will just be there when you need to cry, it would make all the difference in the world.

Try searching online for "warm line" in your area - it's a free service for people who are having a difficult time and just need to talk to someone who will listen. Also, there's 7cups, a free online support service

@gabriella17 & @eric_gladiator , I came on PR this morning to try to find support. I have been thinking suicide for a few days now, but I too work myself away by hearing others struggles and knowing I'm not alone with this.

My struggle? The loneliness. My kids not coming around, not wanting to learn more about ME. @eric_gladiator , remember we are Not alone! We also understand why you feel the way you do about living. I don't know about you but I feel better already because I found your post. I'm not alone, your thinking about what I'm thinking about!
That means you, yes you, helped me today. All the other responses helped me today.

So thank you, remember know matter how sick we feel, or what we can't do.
We are needed in this world, we are not a mistake.

Let's keep focusing on that cure! I know it's coming. Meanwhile our PR ME friends will always be there for us!

 

[ash0787]

it seems to affect people differently, so theres an element of unpredictability, which is daunting but also it can be good because I seen lots of examples where people were very ill and then got considerably better through perseverance, so I think its like you owe it to yourself to try your best or something like that

also the emotional struggles that people often mention might get better after a few years once you get used to living in this way

 

[jlynx]

I saw a beautiful Monarch butterfly this morning and it filled me with hope and renewal. It was feeding on some flowers we have outside and lingered for a while. I think it was a sign to keep going/ reassurance. Maybe symbolic of my need to make changes in my life to be happier. I haven't seen one in a long, long time and I think they may be somewhat rare as the population is much lower now.

The monarch butterfly is known as the symbol of hope. In Native American cultures, butterflies send your wishes to the heavens. There are tales around them, and they celebrate renewal. In Christianity, the process from caterpillar to butterfly symbolizes resurrection, and transcendence. Born as a caterpillar, they bury into a cocoon, and emerge as a new entity with wings. Butterflies are popular during Easter, as a symbol of rebirth. As with the seasons, they mark change and growth. There are legends and folklore in Asia, where butterflies invoke love and longevity. They have many metaphors, and their vivid colors and movements have inspired artwork and poetry.

My point is- look for the little things like this. Whether it's a butterfly, a pretty flower, enjoying the fresh air outside, or good food. This is where I find joy and what keeps me going.

 

[belize44]

My point is- look for the little things like this. Whether it's a butterfly, a pretty flower, enjoying the fresh air outside, or good food. This is where I find joy and what keeps me going.

Yes, I love butterflies too! Today I got up after trying in vain to get a little more sleep after a not so restful night, because after lying there for about an additional hour, I knew sleep would continue to elude me. So I got up and went to sit outdoors on our balcony, (thankfully screened by plants from curious eyes,( I was still in my nightgown, housecoat and with messy hair, but I spent about an hour out there enjoying the beautiful summer day. My cat joined me, laying in a patch of sunlight, and I admired my marigolds and the herbs growing in their planters. I realized that I could be glad that this was still available to me despite feeling sick, despite feeling exhausted from a bad night's sleep, despite bone crushing fatigue. So I agree, jlynk! I have to remember to look for the little things like this because it makes life worthwhile again.