Survivor remorse?

Update: I am doing ok again. Had neck pain and headache for one day ( I think side effect of LDN), but I am back to base and I am doing more everyday.

I changed a few things: Got off temazepan for falling sleep. Increased LDN to 3mg. Stopped OI training because I feel OK now that I am in the drug. I started exercising also, I change it everyday between pilates, walking, Will try leg weights next because w OI I need to focus on Leg and Abdomen training. Will try swimming too.

I am psychologically in a good place. I need to move on. I am done mourning for the old me. I need to redefine and find the new me. Make new dreams and accept my new life with physical limitations. I think I am somewhat traumatized by this last crash.

I really feel bad about how things went down. What could I have done better, Words said, the way I did things, I wish I could back then see things the way I do now, I was so damn desperate and scared. But whatever happened, happened, and I really need to find a way to live with this and move on.

It is very hard to go to oblivious existence when you have hit rock bottom, and see how far one can go just to stay alive, to survive.

How do you share the same hobbies and former way of seen life with your family and friends (who they think you are). After so much suffering and confusion and been through something like this, you will not be the same ever.

What doesn't kill you makes you stronger ?!?!:confused:. HA! whoever said that never had CFS. I feel humbled like a human been, I feel bear and stripped down to basic instinct level. All I care about is the next feed, sleep and very basic things in life. To stop and smell the flowers, see the sky...

My mom said that she misses my smile and my old carefree self. I am not sure I can have that naivete again. That I can be careless without having CFS relapse in the bottom of my mind, or if I will ever be not afraid to relapse. And where I go mentally on every little crash. If I ever will stop "twitching" or cringing at the thought of what being relapsed means. That I can be in Hell again at a blink of an eye.

Also, there are so many people here that have been so good to me. I am enjoying life again but How can I go oblivious of the suffering here and the people that were there for me when nobody else was??? I have learned to care and form very deep friends here and I want them to find at least the same amount of life I have now. I am sure I will find a balance at some point of it all. But that is where I am now.


I had been assuming that I would eventually recover and 'get back to my life'. After a quarter century of illness I am too old to do some of the things that I once did. Accepting that certain parts of my life are over is difficult for me.
Sorry to hear that! yeah this is devastating, one has to learn not to dwell or you will go nuts. I think that all of you long term sick are heros to me. I see my life in a different perspective, before it was how much I could achieve in a life time, now it has become how long can I survive!!!
Little Bluestem, Your comment could have been written by me. Each period of time in this illness requires a new set of rules to survive and I just don't feel up to it, so I just take one day, hour, minute at a time to hold on hoping something out there will help me.
Hi Inester, thanks for sharing your thoughts in this way. So much rings true. How to be the same again? will i be the same again? what is the same as before? do i even want/need that? Due to an improvement in my health (not recovered by any means but improving in little bits) i have started meeting with an excellent counsellor to discuss all of these issues. I no longer know who to be, or how to be. I am adjusting. I am attempting to regain some lost confidence. I do not know who or how i will be next. How to protect myself in the world when i feel so vulnerable and unwell? Many of the things i would love to have done in my life would not be possible now anyway. I am only 43, but already the effects of age on my body are showing. I carry too much excess weight - one of my lungs is stuffed. I get repeated infections in it and the antibiotics that i need to stay alive screw up my inflammed stomach.
I try to live one day at a time. I try to be greatful - two years ago i couldnt play a board game with my kids or sit at a table to eat a meal with them - two weeks ago we went (gentle) swimming!
But as you say - always there is the caution - can't go back there. But i have been there before and achieved remission and watched it all crash down again in the most horrifying, appaling mess and still trying to pull myself out of it.

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