What type of person were you prior to falling ill

[Aerose91]

Wondering if there is a trend in those of us who end up here

I'll add another part to it- for those who pushed themselves, do you think it was in a healthy way?

 

[southwestforests]

What kind of person was I, before?

Hmm ... tell ya what, I will answer it this way:

I was an introvert with high-functioning autism (which was diagnosed late, after I was 35 years old) who enjoyed working in retail in the pets, toys, stationery, books, and especially the hobbies, categories.

How someone with that baseline personality ended up in retail, enjoyed it, and was pretty good at it, will most likely remain an eternal mystery.

Got my dose of people interaction, and energy, at work, was happy with that; then would come home, lock the door, unplug the landline telephone, (this was 1990s & I didn't have a cellphone) play with my cats and build models. Sometimes with radio on, often times not.
I didn't watch TV, didn't have one, it was too flickery and the sound was too intense and chaotic.

Also was active with a Sunday School group and two miniatures gaming groups.

Also took college classes from time to time.

 

[Dechi]

Wondering if there is a trend in those of us who end up here

I'll add another part to it- for those who pushed themselves, do you think it was in a healthy way?

Probably not. I have always been pushing myself too much, not listening to my physical signs. I also had a very stressful job, worked too much, didn’t sleep well, had a hectic family life, trained a lot, etc.

Those who push themselves by definition probably don’t have the most balanced lifestyles.

 

[Jyoti]

I'm going to have to concur with @Dechi--I burned the candle at several ends most of my life. I truly believed that going at 110% or more was way better than keeping something in reserve. I wanted all I could squeeze out of life--experiences, accomplishments, adventures, love, things learned and hopefully mastered--and that meant not 'wasting time' resting or sleeping much. It WAS glorious in many ways. But probably not sustainable no matter what.

I look back with a great deal of piquant pleasure, and yet I wonder if the way I lived led me here. At the same time I am SO grateful that I had that time and I got to do the things I got to do. Hearing the stories of people who are sick at 20 or 30 or even 40 makes me so sad, people who are not going to get those precious decades of over-extension that I did. Or whatever they choose to do with their lives.

It's the choice, isn't it? That is a lot of what we lose. The choice to live as we would like, to do what we are called to do, to be who we can feel we are inside. Maybe, I hope, younger ones of us will regain those choices later in life--soon-- when someone figures out how to help us. I am very aware of my good fortune in having had a lot of time to live full out (I did it often ignoring the signals my body was kind enough to send me), and still, I am pretty sure that I am doing some pretty serious balancing of that now....

 

[Aerose91]

I'm going to have to concur with @Dechi--I burned the candle at several ends most of my life. I truly believed that going at 110% or more was way better than keeping something in reserve. I wanted all I could squeeze out of life--experiences, accomplishments, adventures, love, things learned and hopefully mastered--and that meant not 'wasting time' resting or sleeping much. It WAS glorious in many ways. But probably not sustainable no matter what.

I look back with a great deal of piquant pleasure, and yet I wonder if the way I lived led me here. At the same time I am SO grateful that I had that time and I got to do the things I got to do. Hearing the stories of people who are sick at 20 or 30 or even 40 makes me so sad, people who are not going to get those precious decades of over-extension that I did. Or whatever they choose to do with their lives.

It's the choice, isn't it? That is a lot of what we lose. The choice to live as we would like, to do what we are called to do, to be who we can feel we are inside. Maybe, I hope, younger ones of us will regain those choices later in life--soon-- when someone figures out how to help us. I am very aware of my good fortune in having had a lot of time to live full out (I did it often ignoring the signals my body was kind enough to send me), and still, I am pretty sure that I am doing some pretty serious balancing of that now....

Damn, I couldn't have put it any better myself. I went down at 26, though, and part of what has plagued me so much is that I hadn't yet achieved all the personal growth I aspired for before falling ill. I suppose I could have gotten closer had I navigated some things differently but I was sort of the type to go with the flow and take things as they came. I did some really cool stuff in the time I had but still felt my highest achievements weren't met yet. It's the personal growth and fears I wanted to push through that I hadn't yet succeeded at that has made the loss from this so difficult. It feels like we were the type who shot for the stars!

 

[Aerose91]

What kind of person was I, before?

Hmm ... tell ya what, I will answer it this way:

I was an introvert with high-functioning autism (which was diagnosed late, after I was 35 years old) who enjoyed working in retail in the pets, toys, stationery, books, and especially the hobbies, categories.

How someone with that baseline personality ended up in retail, enjoyed it, and was pretty good at it, will most likely remain an eternal mystery.

Got my dose of people interaction, and energy, at work, was happy with that; then would come home, lock the door, unplug the landline telephone, (this was 1990s & I didn't have a cellphone) play with my cats and build models. Sometimes with radio on, often times not.
I didn't watch TV, didn't have one, it was too flickery and the sound was too intense and chaotic.

Also was active with a Sunday School group and two miniatures gaming groups.

Also took college classes from time to time.

I love this. It seems as though you lived life in the direction that you were naturally drawn in. What more could one hope for? Minus the M.E.....

 

[Aerose91]

Probably not. I have always been pushing myself too much, not listening to my physical signs. I also had a very stressful job, worked too much, didn’t sleep well, had a hectic family life, trained a lot, etc.

Those who push themselves by definition probably don’t have the most balanced lifestyles.

I was the same. I knew I needed to take a break at some point but assumed that would just be a 2 week vacation to wind down. I never thought illness- particularly chronic- was a possibility

 

[Aerose91]

I'm finding difficulty lately in thinking that this may be in large part self inflicted. I felt having such a valid reason why I didn't accomplish all my goals in life or start a family made it more acceptable but wondering if I put myself here makes those things feel much less easy to swallow.

 

[LongMacc]

I will also agree, I led an extremely unhealthy and caffeine dependent lifestyle for a good couple of years before I got ill - Not tooting my horn in any way.

Would train twice a day, eat WAY too much meat/protein, rely on coffee and sleep too little + like most of you, try make the most out of life by doing EVERYTHING possible. If it turns out that this is in part self inflicted AND able to be reversed (assuming no permanent damage :/ ) that does give me some strange macho comfort in getting myself here in the first place. Not saying that it is enjoyable what so ever - I would sell my soul and take on a lifelong loan to get out of this place.

 

[southwestforests]

It seems as though you lived life in the direction that you were naturally drawn in.

Ya know what, you may be on to something. I don't think I have ever much consciously thought about that, but, yes, it does seem to be what happened.

 

[Aerose91]

I will also agree, I led an extremely unhealthy and caffeine dependent lifestyle for a good couple of years before I got ill - Not tooting my horn in any way.

Would train twice a day, eat WAY too much meat/protein, rely on coffee and sleep too little + like most of you, try make the most out of life by doing EVERYTHING possible. If it turns out that this is in part self inflicted AND able to be reversed (assuming no permanent damage :/ ) that does give me some strange macho comfort in getting myself here in the first place. Not saying that it is enjoyable what so ever - I would sell my soul and take on a lifelong loan to get out of this place.

You take solace in thinking you may have gotten yourself here? May i ask why? I have always thought the opposite, that i was dissapointed in putting myself here

 

[valentinelynx]

This is a topic that has come up again and again since the beginning. The idea that sufferers of CFS are people who overworked themselves into illness is the origin of the derogatory term from the '80s of "Yuppie Flu." This kind of unfounded assumption has led to both society and the ill themselves blaming the sufferers for the disease. Here's a good essay on the topic: Why Attributing 'Type A' Personalities to Myalgic Encephalomyelitis Needs to Stop

I'd answer the question of "what type of person was I before I became ill" with: Healthy and active!

 

[Avena]

Highly agree with @valentinelynx! The «pushed myself»-part did not come until the illness had started. Also agree that this is a dangerous focus.

 

[YippeeKi YOW !!]

@Aerose91
Incredibly good thread, and massively intelligent answers.

Unfortunately, I don't have one at the moment, but I'll be back.

Thank you @Aerose91 for starting this thread. And thank you, too, to all the smart, savvy posters here. You're a treat !!!

 

[Aerose91]

This wasn't meant to be accusatory in any way. I certainly don't think we just thought ourselves into this but rather wanted to see if a high achieving mindset may have just been another factor. All the other prerequisites needed to be there already.
In my case i feel there was always something wrong with me below the surface and wonder if my high achieving mindset may have helped exacerbate things.

I'd also like to note that when i occasionally have a successful detox, namely liver, i tend to feel much calmer. Calmer than i ever was prior to getting sick. That gives me more belief that something was off in me my whole life and it may have been influencing my mood, causing my constant feeling of being unsettled and a bit restless

 

[Jyoti]

ME/CFS is NOT on a par with lung cancer caused by decades of smoking or cirrhosis caused by decades of drinking. And while it is never helpful to blame the sufferer, no matter the choices made beforehand, I think it is important to make a distinction between situations of clear-cut causality and the desire we have to understand the misfortune that has befallen us. It is normal to want to know why. And it is also normal to look at one's own actions and choices to try to get clarity and to empower ourselves. After all, at some level what we have put wrong we should in theory be able to put right?

But... I think more along the lines of many cancers that we now know emerge as a result of multiple factors all of which must be present--genetic, environmental, situational, etc. Why is it that a family can live near toxic waste and two, but not all of them, develop early cancer? How is it that one person has disastrous reactions to mold in the house while the other is fine? Why is it that one doctor working with Ebola patients gets sick and another does not? In the case of people who push hard, why do some get ME/CFS and others sail on into their 90s still at it? Seems to me that there have to be multiple factors converging and there is so much mystery about what those might be, particularly in our case.

My point is that we must not blame ourselves--there are plenty of others apparently happy to do that! None of us 'did this to ourselves.' Even unknowing. I followed my heart and my nature, as I am sure did you, @Aerose91 and all others. I did my best; as is always the case, hindsight is illuminating.

I think that there are deeply important things to learn, at least for me, from this turn of events. About who I am in the world. Losing the ability to be who I was, I must find other ways to live my truth. When I can! And there are openings, like your liver detox experience, Aerose91, that shine some light on what is profoundly true. Were you someone who was unsettled and restless? Or was that a chemical imbalance of some sort?

Being able/having to stop and look at questions like these-- it is a sort of personal growth that might well have been skimmed over had you had your health. I am not being Pollyannaish at all--this whole thing sucks--but there are some gifts and you are tapping into them. Your accomplishments may turn out to be different than you longed for or anticipated before you got sick, but you are growing and in ways that you likely would not have in robust health.

I agree with @valentinelynx that associating temperament with illness can be very dangerous, but at the same time, I believe that having the enforced time to contemplate our own inner nature is not only a benefit of this illness but perhaps one of the best ways we can turn lemons into lemonade.

 

[xcell]

Maybe being overmotivated is already the disease? Faulty metabolism that releases too much of the happiness hormones and you feel well even though you are already giving 110%?

 

[Juanita Vee]

I'll admit I kind of blame myself, or at least am kicking myself... I went from living a healthy and active lifestyle to overdoing things and cutting back on sleep. Then I got what I thought was the flu. Then I never recovered. Two years later... and I'm kicking myself. However, I don't have an official diagnosis of ME/CFS and I have always had to take extra good care of my health (eat healthy, get enough sleep always) before all this, so maybe it isn't ME/CFS.

I agree we shouldn't blame ourselves, but I also think people should be encouraged to live healthier lifestyles regardless of how healthy they currently are. Less coffee, more sleep! Stop and smell the roses! I wish I had appreciated my healthy lifestyle instead of being greedy and trying to do more/sleep less!

 

[Aerose91]

Maybe being overmotivated is already the disease? Faulty metabolism that releases too much of the happiness hormones and you feel well even though you are already giving 110%?

I actually think mine was quite opposite. I was always a little slower to recover, a little more lethargic. Therefore, because i wanted to push through that stuff i ran on adrenaline most of the time

 

[Aerose91]

But... I think more along the lines of many cancers that we now know emerge as a result of multiple factors all of which must be present--genetic, environmental, situational, etc. Why is it that a family can live near toxic waste and two, but not all of them, develop early cancer? How is it that one person has disastrous reactions to mold in the house while the other is fine? Why is it that one doctor working with Ebola patients gets sick and another does not? In the case of people who push hard, why do some get ME/CFS and others sail on into their 90s still at it? Seems to me that there have to be multiple factors converging and there is so much mystery about what those might be, particularly in our case.

I completely agree with this. I was trying to express it like this but i think you explained it better. I don't think we brought this on ourselves but for those of us where the precipitating factors were there, might us being type A personalities who pushed ourselves have been a factor in tipping us over the edge?