I have some fear of the idea of recovering

Aerose91

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Fall is rolling around and the less humid air helps me a bit. Successful detoxes and no diet missteps have given me a few days of better clarity. Plus the derealization & depersonalization are extremely thick for me so if they thin at all, a sense of perspective peaks through.

But when that comes, anxiety follows close behind. Im obviously not recovered during these times but just the ability to feel a bit of perspective brings the reality of how much time I've lost. Then, the idea of sustained progress leading to recovery gives me the realization that i would be sitting in the middle of the world at 35 yrs old.... with nothing.

My friends long moved on. I have nothing a 35 yr old should have established. I could return to my old career but i have no desire (if illness brings any positive to it, it's a sense of clarity of what we truely want). So, id likely go back to school which is difficult at this age.

But there's more to me than that. A deeper desire. I was a person who had such passion for what i believed in, what i thought was good and right. I was so protective of the people i cared about and they all knew what i stood for. I strived to be a positive part of something bigger than me.

I don't have anything anymore. I feel devoid of purpose. There's nothing to return to. Where are my friends and loved ones to look after? Out living their lives apart from me. That drive to serve, protect and be a positive influence on the world isn't doable like this.... nor would it be if i was recovered. It's like I've lost the ability to navigate myself toward my best life, especially if i were to start over at this age. It's amazing how much our family, friends and environment dictate our direction when we are young adults.

I always wanted a family. A wife i would pour my soul into and kids who i'd keep safe through the gates of hell. I can't expect to meet someone and build something when i have nothing established in my life, but that's understandable. I miss my friends watching a movie and when the hero saves the day say; "omg Jeff, that's so you". Because they knew who i was and they'd be safe with me.

But it takes years to establish those skills and that community. It feels as if recovery would be like standing alone in the middle of an open field wondering where to go now. Could a good life even be re-established? If the battle of this illness is won, it's as if we then stand at the gates of a new, even larger one.

I apologize for the emotional torrent in this post but it's an emotional topic. Does anyone else share these sentiments?
 
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Oh @Aerose91 don't despair!

It sounds to me that when you think of recovery it brings up everything this disease has taken from you. And as you say, it's so much. It is for us all. When I think of how much I've lost, I am also swamped with fury and despair. But when I think of recovery, I think of the ability to rebuild my life. Yes, there's going to be a lot to rebuild, just as you say. But this thought still gives me hope. I am sure my passion and ability to navigate for whatever it is will return, along with my ability. I think this will be so for you too. Sometimes I try not to think of how old I will be when a cure finally comes- I keep my hopes pinned on the thought one is coming. Yes, it's daunting to think of everything that will need rebuilding, but I like the thought of rebuilding, even if I'm 70 better than the thought of never being able to rebuild at all. That being said, I'm not sure I would rebuild my life just like it was, or how I thought it should have been. Maybe after all this time I want something else. Mostly I want the opportunity to find out, what I would want and what I would do.

I hope this sounds hopeful or helpful to you. My answer is an emphatic yes! A good and meaningful life can be re-established. If I could just take a walk, go to an art museum, see a movie, ride a horse... I WILL make these things happen after a cure. I'll bet you have a list too, even if you don't think about it too much since it's so painful. The challenge is surviving until then. After all, when a cure comes we'll all be restarting together.
 
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I do have some fear of recovery. I think the idea of my life changing so dramatically, even in a positive way, is scary. I have this vision that recovering would be like being thrown in the deep end of a pool and flailing about. You said it much more poetically:
If the battle of this illness is won, it's as if we then stand at the gates of a new, even larger one.
But then I think about the rare days when I have energy. And I realize that if I felt better I wouldn't be flailing. I'd be able to swim.

And I also remember that if I magically awoke one day feeling better, I wouldn't have to change my life by the following day. This kind of life change can be a gradual process.

I was a person who had such passion for what i believed in, what i thought was good and right. I was so protective of the people i cared about and they all knew what i stood for. I strived to be a positive part of something bigger than me.
Although you currently don't have ability to protect people in the way you used to, I'm sure that you haven't lost your sense of what's right and wrong. And there may be ways to stand up for the things you believe in, even from bed.

Then, the idea of sustained progress leading to recovery gives me the realization that i would be sitting in the middle of the world at 35 yrs old.... with nothing.
I wonder if there are ways that you could find some direction now, even given your limitations. Carving out a niche for onesself in a world where it can be almost impossible for one to function is a major challenge of this illness. But it is possible, even if you only take the tiniest steps.
 

Moof

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I'm at a different stage of life (60) and I've been ill since I was in my mid-teens. I have none of the things that you're 'supposed' to have built by my stage of life, either, but I'm happy. I don't know what I'd do if I recovered, but that's exciting. Not having a plan can be a really positive way to live, as fate has a way of wrecking plans anyway! And to be honest, life consists mostly of making it up as you go along.

You know, most people will stand at that gate facing a new, unfamiliar, and terrifying life at some point. It might be because of illness, bereavement, a long-distance move, a new or broken down relationship, a change of career, or different financial circumstances. Many of us reinvent ourselves several times over a lifetime – sometimes it's because of a negative pressures, sometimes it's because of positive ones. Ask anyone who's fallen suddenly, crazily in love.

Needs, desires and perspectives all change. What I most wanted at 15 or 25 or 35 – where I can even remember it – eventually became irrelevant. I always found something else I really wanted, and it changed my priorities. If, when that recovery comes, you'll probably find some of yours have changed too, and that it's just fine to be wherever you are.
 

Aerose91

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@Moof Thank you for your perspective and I'm so sorry you have gone through this so long. Some of the things I strived for in my early twenties, when I went down, seem irrelevant now. Others, namely the things I hadn't yet achieved, burn even harder inside me now and that is a struggle often times.

I do have some friends who have gone through divorces and other various hardships, but one thing they CAN do is branch out socially while they are grieving. Or throw themselves into their work. I know this isn't always the best thing because it masks pain oftentimes but sometimes I long for those options. A supportive social group or something productive to put my energy into.

I know this sounds cheesy but I always felt like I was different than anyone else I was surrounded by. Like I was meant for something more in this world. I always had the feeling like I had more passion and purpose in the things I did (and wanted to achieve) than others. The connections I made and the role I played in society and my specific community meant a great deal to me which is why it hurt so much to see most of my friends disappear after I fell ill. Without that deeper purpose I feel naked. Empty.

I thank you for your wisdom, though. It means a lot. There is much I can learn.

Although you currently don't have ability to protect people in the way you used to, I'm sure that you haven't lost your sense of what's right and wrong. And there may be ways to stand up for the things you believe in, even from bed
Rebecca. Thank you for the kind words. My guess is that you're a strong swimmer :redface:

I most certainly have not lost my sense of what's right and wrong, if anything that sense has grown stronger. I was always an empathetic person but that has grown exponentially. I have come to appreciate further how individual and invisible each person's struggles may be. Although far from my desired life, this experience has taught me how to be more conscious of my own thoughts and realize how easy it is to lead an unconscious life, merely drawn in by the energy of others. @Moof hit the mark on this very well. Actually, that has made some of this journey more difficult, now being able to see more clearly what my purest desires were in life and that not only do I wish I could pursue them now, I wish I had done so sooner. I accomplished a lot in my time before falling ill but I now know it wasn't entirely on the mark. I dream of being able to follow this truest path one day.

@wabi-sabi Thank you for such enlightening words! I think you picked up well on the difficulty I find myself having; if I were to recover I would likely first be hit with the emotion of what has been lost and the sadness and anxiety reign supreme there. It's funny, I've always said that if I were to recover I'd be elated at just the opportunity to start over.... until I actually face that prospect. Then it's not so easy, lol.

I do have a list in my head and like I just mentioned to Rebecca, the time I've been allowed to reflect while ill has made that list change somewhat. However, my list is high reaching and aspirational. I've always been like that and sometimes it felt like a curse. Those of us who feel like there's a greater purpose and we strive for more. These are positive things but it can also wear you out at not being able to achieve them, let alone pursue them. Combine that with most things being highly active and well, they might as well be in a different universe. I still haven't lost hope, though. I'm not sure if that's a blessing or a curse.
 

valentinelynx

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It's so hard to picture life as healthy from the position of having been ill for so many years. Everything seems so difficult from the bottom of the hole, with no energy to climb out. However, I think that if you did recover, you would discover that you have the energy to pursue life again. Sure, going to school in your 30's (or 40's or 50's, etc.) is hard, but if you were healthy it might be scary, but also inspiring. Through resuming your education you'd find a way to make steady progress towards new goals and you would meet new people. Lots of people return to school later in life these days; you wouldn't be alone!
 

Aerose91

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It's so hard to picture life as healthy from the position of having been ill for so many years. Everything seems so difficult from the bottom of the hole, with no energy to climb out. However, I think that if you did recover, you would discover that you have the energy to pursue life again. Sure, going to school in your 30's (or 40's or 50's, etc.) is hard, but if you were healthy it might be scary, but also inspiring. Through resuming your education you'd find a way to make steady progress towards new goals and you would meet new people. Lots of people return to school later in life these days; you wouldn't be alone!
It's crazy that being older than the norm makes people resistant to doing things, you know? Not like we don't have a good excuse but that shouldn't matter anyway. Crazy how the thought of judgement by others can hold you back.
 

Wishful

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Keep in mind that this disorder alters the way you think. I went through periods of suicidal moods: why bother continuing to live? Later, I discovered that that frame of mind was chemically induced (excess quinolinic acid I think). Once I started avoiding niacin and tryptophan, I was no longer suicidal.

Right now, your thought patterns are being biased by ME, probably in a variety of ways. If you did get a magic pill that snapped you back into a healthy state, your thoughts and perspectives would be quite different. I strongly recommend against making any important decisions about the future (if you can avoid making them) while suffering from this brain-altering disease. You can't know what you'd like to do when you're healthy again, or what will be important to you when you're healthy again, when you're not presently healthy.
 
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Keep in mind that this disorder alters the way you think
This is so true! It's one thing to notice I can't spell anymore (without great effort), but another to realize I have a new and unpleasant personality and thought processes. That's the scariest part of the disease for me. I've noticed when I crash I am depressed and when I am not crashed I am not depressed. I don't just mean I feel low and unhappy about crashing (which of course I do)- I mean for a time my thoughts and emotions are distorted like someone with major depressive disorder. Then I get some rest, and my real self comes back, just a little bit. While these moments are frightening and painful, I remind myself they are not real- they are a symptom of the disease. That helps keep me going until they pass. It also makes me believe that if a cure could be found, all of me could come all the way back. I am keeping hopeful for that day.
 

Wolfcub

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If you do fully recover it is a wonderful blessing.
But then there's the awful gap of all those years you spent only able to battle illness, and not able to establish anything else.
So what has happened is a complete re-set. Societal roles that you once felt fit you just don't any more.
But they were just "roles". The real you is actually stronger, wiser than you think. No one can go through such a devastating experience without gaining something priceless within.

Yet life feels suddenly like an empty blank page. Yes that is scary.

It happened to me once. In 1999-2000

Then, everything I had known crumbled around me. My whole life was like a blank sheet of paper. And the devastation had not been without some real trauma.

I sat outside and asked for help. A little bird came down in front of me and stared at me -no more than three feet away. I knew there was hope and something would help me build something new.
I didn't worry about it -just got on with each day as it came, and met each challenge as it came, and kept on keeping on. Sure enough new things were born, and in fact some of the purest loveliest things I'd ever known in my whole life. And some real wonders.

So I am glad that old life died and disappeared.
 

Wishful

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Societal roles that you once felt fit you just don't any more.
Good point. Society places expectations on us. ME breaks us out of those expectations, because it makes it more or less impossible to meet those expectations. So, take it as a good excuse to ignore those expectations. Create your own new ones, even if it's just 'survive today'. If you do free yourself from ME, you can create new ones based on 'having survived ME'. When other people don't understand having different expectations, just point out that they'd understand if they went through what you did, and they can't understand if they haven't.

It's your life to live, the way you want to live it. You can find happiness even if your lifestyle doesn't match that of your neighbours.
 

gbells

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Fall is rolling around and the less humid air helps me a bit. Successful detoxes and no diet missteps have given me a few days of better clarity. Plus the derealization & depersonalization are extremely thick for me so if they thin at all, a sense of perspective peaks through.

But when that comes, anxiety follows close behind. Im obviously not recovered during these times but just the ability to feel a bit of perspective brings the reality of how much time I've lost. Then, the idea of sustained progress leading to recovery gives me the realization that i would be sitting in the middle of the world at 35 yrs old.... with nothing.

My friends long moved on. I have nothing a 35 yr old should have established. I could return to my old career but i have no desire (if illness brings any positive to it, it's a sense of clarity of what we truely want). So, id likely go back to school which is difficult at this age.

But there's more to me than that. A deeper desire. I was a person who had such passion for what i believed in, what i thought was good and right. I was so protective of the people i cared about and they all knew what i stood for. I strived to be a positive part of something bigger than me.

I don't have anything anymore. I feel devoid of purpose. There's nothing to return to. Where are my friends and loved ones to look after? Out living their lives apart from me. That drive to serve, protect and be a positive influence on the world isn't doable like this.... nor would it be if i was recovered. It's like I've lost the ability to navigate myself toward my best life, especially if i were to start over at this age. It's amazing how much our family, friends and environment dictate our direction when we are young adults.

I always wanted a family. A wife i would pour my soul into and kids who i'd keep safe through the gates of hell. I can't expect to meet someone and build something when i have nothing established in my life, but that's understandable. I miss my friends watching a movie and when the hero saves the day say; "omg Jeff, that's so you". Because they knew who i was and they'd be safe with me.

But it takes years to establish those skills and that community. It feels as if recovery would be like standing alone in the middle of an open field wondering where to go now. Could a good life even be re-established? If the battle of this illness is won, it's as if we then stand at the gates of a new, even larger one.

I apologize for the emotional torrent in this post but it's an emotional topic. Does anyone else share these sentiments?
A good skill to learn is called noting. I learned this in counseling with a psychologist. Noting is where you learn to stop beating yourself up over unpleasant thoughts and instead regain control of your mind and feelings. You can learn it through the Headspace meditation app and by reading Russ Harris' excellent book The Meditation Trap.
 

Aerose91

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A good skill to learn is called noting. I learned this in counseling with a psychologist. Noting is where you learn to stop beating yourself up over unpleasant thoughts and instead regain control of your mind and feelings. You can learn it through the Headspace meditation app and by reading Russ Harris' excellent book The Meditation Trap.
Sounds similar to DNRS?
 
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@Aerose91
Powerful post, bringing with it a stir of echoes.


It created a kaleidoscopic swirl of images which will take some sorting, but once I get it together, I'll be responding with something more substantial.

Just know that you're not alone. I can't speak for everyone here, but for me, the fear of life without this illness, as cumbersome, unpleasant, challenging, and draining as it is, is almost unthinkably frightening.
 
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nyanko_the_sane

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It is possible to make our dreams come true, even though in many cases ME has robbed us of so much time. Just like how we adapted to ME, we would need to learn to adapt to our new found normalcy post ME. Since ME puts so many restrictions on us, the experience might be a lot like being let out of jail.
 

gbells

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You have a choice on how to see your life. Sure you can pine for the loss of a normal life. However you can also recognize that it is an opportunity for you to increase your empathy for those who have to undergo suffering because you get to experience it first hand. Suffering doesn't mean that you can't experience joy. Learn to use appreciation to value what you can have and appreciate it. In my experience, some of the best people I have met are that way because they had the chance to suffer and learn humility from it. The meanest ones are those who didn't.