Do you work / have career?

[Beyond]

Kafka sucks Antares. All these existentialists were fucking stupid. Now when I read them I am infuriated, they are stifling and ridiculous. If you have a healthy body, if you can SLEEP, and you can DIGEST, and you HAVE ENERGY, and you dont have CHRONIC PAIN... live with your little deranged mind, it is not so terrible! Now I know that but I was a existentialist with a healthy body that used to read all these misleading authors thinking they were right. Little I knew that having a deranged mind is a trip in the park and that a pathological body is the real tour into Hell. Although is interesting because my deranged mind brought me here.

About work, I wanted to share with the forum a recent experience that illustrates my situation. One of the careers I started was English Philology, because I have always liked speaking in english and the anglophone culture. I have given classes of english both individual and in group several times in my almost healthy years. The last year my mother gave me classes to 3 kids especially troublesome/slow learning. In a few weeks in, they already knew I was weak, depressed and fatigued and no longer respected me. They ended brawling in front of me in the second month and I have to quit. My mother, which is a teacher, told me children sense that and the same happened to a woman with depression.

So the other day my mother arrives and goes to my smaller brother and tells him that she has a work for him. 10 pupils this time and very well payed. I get very angry because they know I need money for my treatments, which they no longer believe in/support as they did, and I am the one writing and reading in english everyday. But as time went on and I was feeling shitty everyday from my unrefreshing sleep, headaches etc I knew why. I couldnt do that job, not with the kind of kids there are in that school. So this is it. I hate it, I am impotent, wanting to do but not being able to and seeing my brother getting a job that should be mine. Same happens to me with almost everything else, women, success, experiences and such.

 

[Keela Too]

I became ill aged 49. After 14 months without being able to work, my teaching job was terminated. I am still new to all this in that I have only been ill now for about 19 months.

I remain totally unfit to work and am having difficulty slowing the slide downwards. Frustratingly I am very disabled in terms of what I can do without producing a relapse (and pretty much every relapse however slight, has resulted in another slide in my abilities).

No treatments on offer - just pacing advice. So I measure steps with a Fitbit as well as being careful about other stressors.

 

[peggy-sue]

Good pacing advice is very worthwhile. Pacing is about the only thing which does help.

But you need to be careful to pace mental activity too.

 

[Lou]

I totally sympathise with you, RedLineBoy. It's difficult not to feel that way.

.

And I sympathize with all you young guys. I don't know if my story and thoughts/advice at the end of this will help you or not. But I'll try.

Long story short as I can. After college I was hired by an organization of over one thousand employees. By age 28 I was second in charge. But didn't like the area of country where I lived and was already burnt out. So took another job with a lot less responsibility, but could live anywhere in country I chose. After the too dry air of Colorado and the too crazy girlfriend I lived with didn't suit me I made the fateful choice of moving to another mountainous area; Lake Tahoe. The person I had been got sucked down the black hole of me/cfs.

At least you know what's wrong with you and that finally some really smart people are working hard to help us. For years (unluckily I didn't know of or find Dr. Cheney or Dr. Peterson) I only knew the flu I got was a train wreck that swept me off my foundation and scattered to smithereens the life I once enjoyed. Nothing was the same.

It didn't take long to lose my job. And the next one and next one, too. I ended up back across the country in Sarasota, Fl where I practically begged a personnel manager who thought I was over qualified (what a joke) for a job at Eckert Drugs as a checkout clerk. The manager ended that on the spot a few days later when he observed my customer line was about four times longer than the next slowest clerk. I won't even tell you about the next few years, it's still hard to go back there.

What saved me was good credit and my father deciding to sell a small business. I borrowed the money from a bank and bought it. And amazingly, I started to get better. Not cured by any stretch. I struggled mightily for years yet, and still do often. But the difference, for me, was the removal of a 'firing man', a boss, and all the constant stress of not knowing when the hammer will drop again. It allowed me to manage my time and work with whatever symptoms were flaring at the time. Some days I could do almost nothing, but would work like crazy to catch up when I felt better. My business has made it though many years now and enjoys an excellent reputation in a small community.

So, there's hope. If there's anyway to remove the 'firing man', perhaps entertain a plan to make that happen one day. If that turns out to be some business that interests you, then I'd suggest making it a simple one where some specialty item on more expensive side (less customers + less headaches + more profit equal less brain fog) is sold. Think clay roofing tiles versus tar tiles, wrought iron gates versus farm gates, old book store versus chain store, something where you're not constantly dealing with the public but when you do there's better chance to make a decent living.

You mentioned you once had a creative side. To some extent that can be rebuilt. I have not long ago finished a five hundred page manuscript for a novel. I would have laughed if told that was possible when I was at the stage of this illness you are now in. I think the brain can find 'work-arounds'. And some of us begin to get better after some years. Btw, for somebody out there, Osler's Web, Part II still awaits being written.

We are who we are, this is the life we've been dealt. We keep fighting and trying (at whatever level that may be, sometimes even in a bed) and I think you'll find in time a deep and growing respect for the unique individual you are who life forced to face such challenging obstacles. I wish you the best.

 

[peggy-sue]

Your story is inspiring, Lou, but I could never, ever do what you have achieved.

There is no way I could ever make a living by being self-empolyed. I do not have any business "sense" at all, and the stress and worry, not to mention abject poverty, would do me in rapidly.
I could never borrow money the way you did, to buy a business. I paid off my mortgage as soon as I could (this was before I got ill). I simply cannot cope with being in debt.

I could not have ever pushed through the way you describe, without ending up bed-ridden, forever.

I have pushed to get through difficult life periods - I ended up far more ill than I was at the beginning, I do not ever achieve the same baseline level again.

 

[Lou]

Your story is inspiring, Lou, but I could never, ever do what you have achieved.

There is no way I could ever make a living by being self-empolyed. I do not have any business "sense" at all, and the stress and worry, not to mention abject poverty, would do me in rapidly.
I could never borrow money the way you did, to buy a business. I paid off my mortgage as soon as I could (this was before I got ill). I simply cannot cope with being in debt.

I could not have ever pushed through the way you describe, without ending up bed-ridden, forever.

I have pushed to get through difficult life periods - I ended up far more ill than I was at the beginning, I do not ever achieve the same baseline level again.

Hi Peggy-sue,

What you say and your experience was my big reluctance in writing that post. I DID NOT intend to imply that all of us could work through this problem. I was extremely lucky and circumstances happen to fall my way. Please remember I was addressing this to some guys here that are presently still working and trying to find their way.

When I said we keep fighting at whatever level we find ourselves, even if bedridden, was my way (apparently not so well) of saying everyone's situation is different, that if you have me/cfs and are able to do nothing perhaps but come to this forum then I have the utmost respect for you. And I do. Thank you for all your wonderful contributions here.

 

[peggy-sue]

Lou, I never thought you were implying we could all do this, I simply wanted to point out that we couldn't all do it.
I too have been extremely fortunate in having a partner who is employed and is willing to look after me, and because I paid off my mortgage, I can make a little income renting my house out.

My particular point being that I simply could not, even if well, cope with self-employment or running a business. You do need a particular sort of brain-set to do that sort of thing.

 

[RedLineBoy]

I'm not sure what I can do anymore. From reading many of these post I feel cognitively I am slower than many of you. Many of you seem to type / write well on the forum tells me that cognitively you are all well.

Read my post and you'll see that I write like a fourth grader. I tried so hard to study and learn how to write well but I just can't seem too.

I can do repetitive task all day along. When it comes to being creative I suck.

I feel depressed everyday thinking what I could of have. I wanted to do so much in life but can't.

I'm only 30, I have long ways to go. I feel I'm just counting my days.

How do I retrain myself? Learning new skill is a joke, I probably can learn it and master it but I forget real quick. My self confidence in my ability is not par.

Not sure what to do. Why me?

 

[peggy-sue]

You need to get your outlook to change from "Why me?" into "What now?"

That's something I read recently here, on one of the very good blogs on coping, it was about the stages of grief you go through when faced with this.
I don't mean to sound harsh, but you are only upsetting yourself at the moment. Perhaps you need more time to work through the anger side of things right now, I don't know.

There is no reason why you have this. Or why me, or why anybody else does. We just do. And now we have to learn to live with it, as best we can.

Yes, some folk can cope cognitively, but probably only for short periods of time, with lots of rest inbetween. And perhaps they are the ones who are most affected physically.

I type things slowly, I check my spelling and grammar and english (mostly).

 

[Valentijn]

I'm not sure what I can do anymore. From reading many of these post I feel cognitively I am slower than many of you. Many of you seem to type / write well on the forum tells me that cognitively you are all well.

Uh, no.

We're often taking far far longer to make these posts than we used to. And even then often making many atypical mistakes.

 

[Sushi]

Uh, no.

We're often taking far far longer to make these posts than we used to. And even then often making many atypical mistakes.

Yep, I always read a post through before posting it but often see it the next day and find some glaring error in it that I didn't see the first go round.

Sushi

 

[RedLineBoy]

You know I'm realizing to why I question my sanity. I accepted a lot of my life than I have. I'm surrounded by successful family who are millionaires, doctors, lawyers and here I am working a restaurant. I think this is what brings me down everyday.

I keep comparing myself to others. I don't think I'll ever get over this because I'm always exposed to my family members who are successful.

 

[Antares in NYC]

Yep, I always read a post through before posting it but often see it the next day and find some glaring error in it that I didn't see the first go round.

Sushi

That's exactly what happens to me. It takes me a while to type anything. I read it and re-read it over and over, before I email or post. And when I read my message the next day, I still see tons of typos and bizarre grammatical errors. It's very frustrating, and makes my work life a nightmare.

 

[Antares in NYC]

You know I'm realizing to why I question my sanity. I accepted a lot of my life than I have. I'm surrounded by successful family who are millionaires, doctors, lawyers and here I am working a restaurant. I think this is what brings me down everyday.

I keep comparing myself to others. I don't think I'll ever get over this because I'm always exposed to my family members who are successful.

I keep doing that myself, but it's not healthy and ends up bringing me down considerably. Our circumstances are tough and complex. We are very ill, even though we "look normal" to others. I find it difficult to chat with friends and family about career matters, as I see everyone moving forward, while I'm stuck, even regressing.
You are not alone. Most of us in these forums are in the same boat. A whole lot of people with our condition can't even get out of bed. At least we can move around a bit. Nevertheless, I wish I could take a couple of years off just to rest off, heal, try to get better, but that's not an option available to me either; I have to work or I'll sink. It's a tough situation, to say the least.

 

[Antares in NYC]

And I sympathize with all you young guys. I don't know if my story and thoughts/advice at the end of this will help you or not. But I'll try. (...)

We are who we are, this is the life we've been dealt. We keep fighting and trying (at whatever level that may be, sometimes even in a bed) and I think you'll find in time a deep and growing respect for the unique individual you are who life forced to face such challenging obstacles. I wish you the best.

Hi Lou,
Thanks for sharing your inspiring story, and for the best wishes. I feel stories like yours gives us hopes that there could be a way out this nightmare. To this day, despite the horrors of this condition and the daily frustrations, I still believe there will be a way out, be it a cure, an improvement, a turn in my luck... I really try hard to keep that hope alive.

Unfortunately for me, I don't have the option to get rid of the "firing man" and the stresses of the work life. To make matters more complex, I live in the most expensive and stressful city in the nation, and work in one of the most stressful and competitive fields in this city. It takes all my energy at work just to make sure that things don't fall through the cracks, which is extremely difficult with a CFS-addled brain. Every day at work is a fight for survival, a fight against my increasing shortcomings, a kabuki theater play where I try to hide the mess inside. Yet people notice you don't perform like others.

I started a new gig recently, and it's been extremely demanding and stressful. This week I worked well above 70 hours of brutally demanding work, dealing with tons of jerks that would not hesitate to push you under the bus if they saw a clear chance. Every day this week I got home crushed with fatigue, and feeling so dizzy, defeated and hopeless that... I will admit this, I cried myself to sleep on a couple of nights. I'm getting terrified that the end of the line may be coming. I really don't know how long I can keep doing this, and I'm becoming aware that I'm working myself to death. I'm having a tough time even justifying the fight anymore. At this point I'm just trying to stay afloat and not sink.

A lot of my thoughts this past week revolved around what my exit strategy could be. I have no idea, but I know that if I keep on this path, if I keep working at 110% when CFS cut me down at 60% of my previous self, is a recipe for disaster. This hellish work week alone has made me realize that I could actually collapse. And then what?
I don't know what my exit strategy is going to be. I'm considering leaving my beloved NYC for a less stressful place, and hopefully with better weather. If I had the money, I would really take a year or two off, just to recover. That is not an option for me:

I carry more debt than I feel comfortable, I pay an obscenely expensive rent for a sh#tty apartment, and live submerged in stress and the increasingly awful living conditions of this crowded metropolis. Despite the circumstances, I was able to save a bit money that could have been used as a down payment for a house or condo. Luck doesn't seem to be on my side: I had a major surgical operation two years ago (unrelated to CFS, but very serious procedure) and it completely wiped out my savings. It wiped them completely clean, even though I have health insurance. Now I have no savings, and must work to pay the bills and my medical insurance, basically living paycheck to paycheck. This is not a sustainable situation, but I don't know what the solution is.

I wish I had better luck. I wish I had the means to retire for a couple of years, or to start my own business, but those are not options available to me. I have to keep working myself sick just to keep my head above the water. Kind of hoping for a miracle at this point.

But I have to keep the hope alive. I must, even as I see my life spinning out of control. There's gotta be hope.

Thanks for sharing your story, Lou.

 

[Marlène]

Antares, that sounds awful. I remember working hellish hours like you but one day I just dropped "dead" till I woke up three months later. It has been 6 years now and I'm still not recovered. Hope it makes you think about a solution.

 

[Lou]

I'm not sure what I can do anymore. From reading many of these post I feel cognitively I am slower than many of you. Many of you seem to type / write well on the forum tells me that cognitively you are all well.

Read my post and you'll see that I write like a fourth grader. I tried so hard to study and learn how to write well but I just can't seem too.

I can do repetitive task all day along. When it comes to being creative I suck.

I feel depressed everyday thinking what I could of have. I wanted to do so much in life but can't.

I'm only 30, I have long ways to go. I feel I'm just counting my days.

How do I retrain myself? Learning new skill is a joke, I probably can learn it and master it but I forget real quick. My self confidence in my ability is not par.

Not sure what to do. Why me?

RedLineBoy said, "I'm not sure what I can do anymore."


What do you like to do? What do you love to do? Do that.

Find your bliss. It's an old saying, but nothing much more true. Even if it's something independent of making a living, putting food on your table, try to find as much time as you can to give to that thing you love to do.

The best way to know your bliss is time disappearance. If you're doing something and the time flies (where did it go, I've been here how long?) then that thing you're doing is a prime suspect for what you should be doing. Pretty simplified version, I know. Everything is complicated, made multiple times harder by this illness.

You said you wished to write better; one of best ways is to read more (when at your stage you've got nothing on me regarding inability to retain information). I spent more time turning pages to previous ones than new ones.


I'm no guru with simple answers, just have more spent time banging heads against me/cfs than you. Take care, friend.

 

[Antares in NYC]

I made it home 30 mins ago (11 hour work day), completely broken and crushed by fatigue, sick with stress. I don't know what the exit strategy is going to be. I'm frozen, can't think straight, can't figure out a solution, only trying to stay afloat. Yet this pace will destroy me. I'm going to crash hard, and I see no way out of this cycle. My life's a nightmare.

Sorry I sound negative, but I felt I needed to share these feelings before curling in bed. I did not mean to bum anyone out.
Goodnight.

 

[Sushi]

I made it home 30 mins ago (11 hour work day), completely broken and crushed by fatigue, sick with stress. I don't know what the exit strategy is going to be. I'm frozen, can't think straight, can't figure out a solution, only trying to stay afloat. Yet this pace will destroy me. I'm going to crash hard, and I see no way out of this cycle. My life's a nightmare.

Sorry I sound negative, but I felt I needed to share these feelings before curling in bed. I did not mean to bum anyone out.
Goodnight.

You aren't bumming us out. You are caught in a difficult place. Maybe by posting and getting comments you'll get some glimmers of how to extricate yourself from what does seem to be a work-style that is going to do you no good.

Best wishes,
Sushi

 

[Ecoclimber]

I made it home 30 mins ago (11 hour work day), completely broken and crushed by fatigue, sick with stress. I don't know what the exit strategy is going to be. I'm frozen, can't think straight, can't figure out a solution, only trying to stay afloat. Yet this pace will destroy me. I'm going to crash hard, and I see no way out of this cycle. My life's a nightmare.

Sorry I sound negative, but I felt I needed to share these feelings before curling in bed. I did not mean to bum anyone out.
Goodnight.

If you have ME/CFS, the more you push, the worse it will become. Stress adversely affects this illness. If you Push/Crash your remissions will become shorter and your relapses longer until they stop completely. You can adversely affect your health permanently by continuing to push yourself. You could eventually become bedbound! When you have good days do nothing. Keep within your energy enevelop.

I don't know what field you are in but it sounds like the financial industry. I would start documenting everything as you may have to go out on a corporate disability leave, leave of absence or file for disability. Getting off the treadmill and getting your sanity back is key because without your health, you cannot make life transitions. I was corporate manager of a worldwide organization so I know the ins and outs of th corporate world. Message me if you want.

Eco