ME/CFS people working full-time (or close to)? What is life like for you?

[u&iraok]

I went on a weekend trip to Florida 3 weeks ago and I can't recover from it because I can't rest. I lay down in the car all the way there and back and didn't do anything strenuous physically, just the mentally strenuousness of being around a lot of people. Went to bed early and slept well all weekend. But it was still too much of course.

This is one of the things that makes working difficult. I can't do anything extra because I can't rest from it. I lay down over the weekend for two days straight but my rest was interrupted by work on Monday. I feel that yukkiness you feel which is actually good because it's your body going deep into a rest but it was interrupted so I'll be back to over-adrenalized can't-rest-mode.

When I get bummed about it I think about my friends here who are worse off and also the poor in London during the 1800's Industrial Revolution working 14 hours a day 7 days a week in bad conditions exposed to toxins and dangerous machinery with not enough food and coming home to rat-invested overcrowded hovels. Then I feel worse. No, really, it does help me soldier on.

 

[Andielyn]

I went on a weekend trip to Florida 3 weeks ago and I can't recover from it because I can't rest. I lay down in the car all the way there and back and didn't do anything strenuous physically, just the mentally strenuousness of being around a lot of people. Went to bed early and slept well all weekend. But it was still too much of course.

This is one of the things that makes working difficult. I can't do anything extra because I can't rest from it. I lay down over the weekend for two days straight but my rest was interrupted by work on Monday. I feel that yukkiness you feel which is actually good because it's your body going deep into a rest but it was interrupted so I'll be back to over-adrenalized can't-rest-mode.

When I get bummed about it I think about my friends here who are worse off and also the poor in London during the 1800's Industrial Revolution working 14 hours a day 7 days a week in bad conditions exposed to toxins and dangerous machinery with not enough food and coming home to rat-invested overcrowded hovels. Then I feel worse. No, really, it does help me soldier on.

I know just what you mean. I lost my battle with trying to work today....I lost my job.

 

[Mel9]

I know just what you mean. I lost my battle with trying to work today....I lost my job.

Andielyn, so sorry that this has happened to you. Hope you are ok and have support.

 

[KitCat]

I know just what you mean. I lost my battle with trying to work today....I lost my job.

I am so sorry to hear this.

I noticed from your earlier post that you are on STD. Please excuse if this is not helpful, but I wanted to encourage you to consider putting in your LTD application as soon as possible. Some LTD policies will not let you apply once youare no longer employed. I do not know what your policy says or when your official last day is, but I thought this might be something worth looking into.

 

[meandthecat]

So sorry Andielyn, it sends a shiver through me and I guess pretty much all of us holding down a job.

 

[Andielyn]

I went on a weekend trip to Florida 3 weeks ago and I can't recover from it because I can't rest. I lay down in the car all the way there and back and didn't do anything strenuous physically, just the mentally strenuousness of being around a lot of people. Went to bed early and slept well all weekend. But it was still too much of course.

This is one of the things that makes working difficult. I can't do anything extra because I can't rest from it. I lay down over the weekend for two days straight but my rest was interrupted by work on Monday. I feel that yukkiness you feel which is actually good because it's your body going deep into a rest but it was interrupted so I'll be back to over-adrenalized can't-rest-mode.

When I get bummed about it I think about my friends here who are worse off and also the poor in London during the 1800's Industrial Revolution working 14 hours a day 7 days a week in bad conditions exposed to toxins and dangerous machinery with not enough food and coming home to rat-invested overcrowded hovels. Then I feel worse. No, really, it does help me soldier on.

I didn't properly reply @u&iraok . I went on vacation in Florida and really never got a chance to rest up. It's been downhill since even though I have been improving I ran out of time. When I felt good I still spent my evenings and weekends resting up just to make it through the next week. I, too, would think of those less able and less fortunate and it would provoke me to soldier on, but soldiering on always came with a crash.

@Mel9 Thank you. It's hard but I am okay.

@KitCat Thanks, good advice. That is my next move.

@meandthecat I know, and sorry to send shivers down your spine. I was there. I have worked for over 28 years with exemplary service until I got sick and my work is still excellent when I'm there but I've had so many crashes this year that I lost the fight. In one way it is a relief, maybe I can rest and heal and really take care of myself. ~Andielyn

 

[KitCat]

@KitCat Thanks, good advice. That is my next move.

I'm very glad you are doing this. I think it will really help you.

I do not know much about LTD, but I have been told:

1. Never write or sign anything with the words "quit" or "resign".

2. Be careful about listing any mental health problems, in some policies there are limits on mental health payments. (this is the opposite for SSDI)

3. I've heard this blog has good information. Written by a "whistle blower" who used to work for an LtD company. https://lindanee.wordpress.com/. Looks like she also offers consulting services.

 

[Battery Muncher]

Very sorry to hear this @Andielyn... I hope you find everyone's advice helpful

 

[u&iraok]

I didn't properly reply @u&iraok . I went on vacation in Florida and really never got a chance to rest up. It's been downhill since even though I have been improving I ran out of time. When I felt good I still spent my evenings and weekends resting up just to make it through the next week. I, too, would think of those less able and less fortunate and it would provoke me to soldier on, but soldiering on always came with a crash.

[@meandthecat I know, and sorry to send shivers down your spine. I was there. I have worked for over 28 years with exemplary service until I got sick and my work is still excellent when I'm there but I've had so many crashes this year that I lost the fight. In one way it is a relief, maybe I can rest and heal and really take care of myself. ~Andielyn

I'm really sorry, Andielyn. I hope it comes with some positives, like resting and healing. It is maddening that being strong, pushing through pain, soldiering on, etc are so highly esteemed by others and ingrained in us.

Doesn't it make the prospect of taking a 'vacation' again, scary? I was able to get super rested and feeling great after a vacation a few years ago where I spent most days alone on a nearly deserted beach on a healthy island, and had great healthy food. Felt the best I have been in years, only to have it undone by the travel coming back.

 

[prioris]

I got sick sometime before 6 years old. I wasn't sure I was sick until 11 years old because I never knew what being healthy felt like. The disease beat me into the ground. The disease crippled so much of my mind. Severe sickness was normal. I was sick 24/7. I did all my schooling sick. I worked for around 30 years. I worked at assembly line at age 16. I worked as fork lift operator at 18. I worked in hardware and software engineering. It was pure hell. I think getting sick as a child, battle hardened me for the adult years. Plus I was highly driven internally.

I always thought my life expectancy was between 2 months and 3 years my entire life. Waking up in the morning was like a nightmare. I had ME, FMS etc. I remember when I was 25, I rolled out of bed and crawled to the bathroom on my belly. The details of my day are just too horrid to get deep into. I did manage to still get to work. I remember a male poster who was 24 ask "how do i plan my life with this disease". I didn't know either so I just started things never knowing if I could complete them. I didn't know I had occipital and atypical neuralgia either so I struggled with what I thought were constant migraines. I rarely took days off from work. Maybe once every 10 years. I rarely got colds or flu. I realized that I would not feel any better lying in bed either. I would be equally miserable working or not working.

During work, my mind would become so paralyzed and crippled that I couldn't function. I was worried that I couldn't do the work. I remember I had a 4 month project due in 2 weeks. I hadn't been able to do any work on it due to sickness. At that moment, I went into an 18 hour a day working frenzy and finished my project on time. That was one of the closest I came to being fired. The one company where I had an 18 year career with, I got placed on the manure list in my second year. I thought I was doomed. Any promotion I had after that needed to be approved by the VP which was 4 levels above my manager. I developed a unique skill set that no one in my building had so was able to survive and get on the best projects.

I survived all the down sizings also even with little support from management. I didn't know why I was sick until I was around 37. I came close to death driving a car many times. I endured many decade of severe constant stress and realized that I could die of many things but stress would not kill me. I never fell into poverty and made a good living economically but struggled in every other way. I tried to use that platform to find a cure.

I did learn how to exercise with this disease as a child so was active in sports no matter how sick i was. If I didn't, I would have fallen into a deep coma and died before I was 20. Later years, I knew I was drifting into a coma around 34. That was caused because I thought by resting, it would heal myself. I was in the midst of a 7 year attempt to exercise that I figured out how to exercise in adult years so was able to avoid death. I knew it could be done. Exercise and sports probably kept the toxins in my liver from building up. I did cure my FMS when I was around 44. I am 61 now.

Looking back, it was like living on the edge of the cliff every day. I didn't know if the next day I would fall off. Many days I felt I was hanging off the cliff by a pinky finger nail. I always live day by day with the unknown with new medical problems popping up.

Incarnating into this world, I was driven to study how the world really worked. The disease impeded that pursuit so I did it inch by inch, step by step. I did complete my study of this earthly physical realm. I wanted to write a lot books but the disease made that impossible.

I do know that the disease came from the eugenic vaccination agenda's of the global power structures that rule this planet. Behind these structures are off planet power structures that dictate the agendas. It is why the disease has been covered up for so long. When I physically die, I don't plan on incarnating again back into this realm if I can help it. My learning on earth is done.

 

[Kinesis]

Hey everyone, I'm still a noob here and also with understanding ME/CFS. I was diagnosed about three months ago and confirmed a week ago, and I had no idea at all what this could do to people. I cannot say how much respect I have for all of us still struggling to live even though we are pretty sure exactly where that's going to take us. That's bravery if I've ever heard of it.

The more I read, the more I realize I've been dealing with this almost a year longer than I thought. At the time I was driving a cab, and as an independent contractor I had a lot of freedom to take breaks when I needed. So when I started needing to stop a few hours into my shift and sleep every time, I thought nothing of it. It would cause brain fog too, I'd pass the street I was heading to and not realize it for a mile, turn around, and do the same thing again.
I had to cut so many fares because of stupid mistakes. I began to worry about the safety of doing my job.

I thought it was just burnout. But that burnout slowly began to ruin my ability to make money, and when Uber and Lyft became a thing I simply couldn't work aggressively enough to even pay for baseline fees. I began paying to work consecutively, and that was my breaking point.

I quit and decided to make a living off of my artwork, and managed that off and on for a year before I crashed and finally realized that something was really wrong with me.

So this is a year later and i'm going into training tonight for another cab job, armed with the knowledge of what is wrong and healthy anxiety about working at all. I want to run away from this, i'm really terrified.

My case is mild, beginning to push moderate, and after reading all of your stories I'm seriously considering looking for help sooner than later so that if and when my condition drops, I'll have something prepared to catch me. The idea fills me with a kind of despair, but then I doubt that's anything y'all aren't familiar with. And I think i'm going to have to have a conversation with my new boss today...

I just wish I could have a better ability to predict how i'll feel when so at least I could be unreliable in a reliable way.

 

[ScottTriGuy]

And I think i'm going to have to have a conversation with my new boss today...

@Kinesis Welcome to the club, sorry you're a part of it too.

Alarm bells went off for me with your quoted line above - I would think the last thing a boss wants to hear from a new employee is about their unreliable and unpredictable health.

I'm seriously considering looking for help sooner than later so that if and when my condition drops, I'll have something prepared to catch me.

Good thinking!

 

[TiredSam]

I just wish I could have a better ability to predict how i'll feel when so at least I could be unreliable in a reliable way

If you haven't already I suggest you get seriously into pacing:

http://www.cfidsselfhelp.org/librar...our-heart-rate-to-stay-inside-energy-envelope

It has really helped me manage to be unreliable in a fairly reliable way. Like you I'm self-employed and can plan my own hours, and my experience has been that it's much better to accept I can only work for 10-15 hours a week, fit it into my very strict and disciplined pacing schedule, cancel my social life and hobbies but be just about able to maintain my current level of functionality, than to try to do more than that, feel like shit all the time and risk a permanent deterioration in health.

Good luck to you and keep posting, there are loads of people on here who have been where you are and may be able to help you out with the benefit of hindsight.

 

[Kinesis]

Well, ScottTryGuy, your alarm bells were spot on.

But I couldn't morally drive a 120,000$ Tesla knowing I can have a brain fog crash. I tried to shift into dispatch but he said that was almost worse because of the pace.

Good bye, momentary dreams of self-sufficiency...

Thanks for your replies, I have a feeling y'all are going to be life savers.

 

[prioris]

@Kinesis Welcome to the club, sorry you're a part of it too.

Alarm bells went off for me with your quoted line above - I would think the last thing a boss wants to hear from a new employee is about their unreliable and unpredictable health.



Good thinking!

I got severe CFIDS by age 6 and eventually FMS not many years later. I worked for 28+ years and it was a nightmare waking up every day. I can tell you that telling a boss is the worst thing you could do. They can have sweet personalities when your healthy but turn very hostile once they realize you have weakness / sickness. Most bosses are sociopaths. It's like being a healthy animal in the forest. The predators will bypass you. Once the predators see a limp or other signs of weakness, things will turn very dark quickly and you will get their focus.

 

[Kinesis]

I got severe CFIDS by age 6 and eventually FMS not many years later. I worked for 28+ years and it was a nightmare waking up every day. I can tell you that telling a boss is the worst thing you could do. They can have sweet personalities when your healthy but turn very hostile once they realize you have weakness / sickness. Most bosses are sociopaths. It's like being a healthy animal in the forest. The predators will bypass you. Once the predators see a limp or other signs of weakness, things will turn very dark quickly and you will get their focus.

He was really nice about it at least. I kind of knew it had to happen, but in the case of a job where you are directly responsible for the lives of others it's not a risk one should take. Not to mention the equipment.

On the bright side maybe this could actually help me try to file for disability. I've been resisting the idea because it hurts my pride so hard, but any other option seems like it's the road straight into a wheelchair.

I can't even imagine how hard your life must have been.

 

[prioris]

i was a software engineer with hardware background. the second year, i wound up on the manure list after year 2. eventually i developed unique skill sets that were different than anyone in building. by year 4 i was getting on the best projects. in order for me to get a promotion, it needed to be approved by the Vice President of the division who was 4 levels above my manager. that was very surreal when i found that out. the ME/CFS caused my mind to go into a state of paralysis. i have to solve technical problems every day. the closest i came to (getting fired) not completing the project was when i had a 3 1/2 month project and i was mentally paralyzed for 12 weeks. with two weeks left, i went into hyper drive and worked 18 hours a day for 2 weeks. i finished the project right in the nick of time.

i did the same in school. i would do terrible during most of the semester but i would use the mid year or finals to boost my grade. there were times when i actually forgot i had these 2 classes (which i went to for 4 weeks but for some unknown reason just forgot about them) and 3 months after during a fire drill a teacher walks up to me and i am thinking - i seen that guy before but can't place him. he asks why i was not going to class. i had n explanation. i met the other teacher too. it was like living in the twilight zone.

there was a lot of stress with every job assignment wondering if i could survive them. i was still live on the manure list working on the best projects. i survived 12+ downsizing's. i was still there even after 80% of the people from this very large company were let go. somebody told me i was the only one in the company who had to ever go thru this procedure. they usually fired people. i never had any support among even my managers but the support i had came from informal power structures. i did have a skill set that not many people had for many of those years. i worked for the company 18+ years.

i felt like going through thousands of miles of landmines coming close to nearly blowing up hundreds of times. disability was not an option for me because CFS did not exist for most of the time and getting approved would have been nearly impossible back then. so i did everything into protecting my economic situation.

Waking up was a nightmare since the FMS essentially made refreshing sleep impossible so i went sleepless for many decades not to mention all the pain everywhere.

after working very long hours, when i got home, i slept 15 straight hours. I remember waking up and not remembering who I was or what i did for a living or what the outside of my house looked like. it was 1 pm (had to be at work 9am) and i laid in bed for 2 hours thinking there is something i needed to do. i was thinking i did some other job for a while but that wasn't it. i finally remembered that i needed to go to work and where. i got to work 4pm. everyone was waiting for me because i had to be at this important meeting for a project. there were days i could not remember who anyone was.

i also had occipital neuralgia and atypical trigeminal neuralgia but didn't know for most of the time. i though all ME/CFS people get that.

i really couldn't articulate what i was going through until i came across this study that essentially compared all the different types of medical conditions and it came to the conclusion that ME/CFS will get more sicker than any other medical condition BEFORE THEY WILL DIE. That articulated what i was living through.

it was certainly surreal and nightmarish journey.

 

[PennyIA]

I know I've had mild ME/CFS for 11 years and got actually pinged by someone who claimed I can't be a system analyst if I have ME/CFS. I've had three relapses where I was bedridden and had to file for family medical leave... and another one where I kept missing a day here and a day there with no warning - and had to file family medical leave as well to clarify to my employer that I wasn't sloughing off for the fun of it (jerk of a boss, don't ask).

There is a lot of my experience that I can see mirrored in your explanation. The only good thing I can share though is that I happen to work for a very good part of the company that is very understanding. They completely panic'd when my last relapse occurred - but managed to survive my absence. Since then they've come to a point of REALLY APPRECIATING what I bring to the table and have realized that they can't work me to the extremes that they were (frequently 14-16 hour days).

I'm now down to a 40 hour week and put my foot down when someone applies pressure AND MY CURRENT boss stands behind me 100%. She asks me regularly how I'm doing, supports my working from home as often as I need it and is very supportive. If I didn't have her support I'd be in a much bigger hurting place.

Names, dates... cannot remember them for the life of me. Stand at her desk for two minutes solid wondering what it was that I needed to tell her, etc. For the most part, I think they blame the work pace and hecticness on my forgetfulness (thankfully) instead of realizing it's the brain fog.

I'm just trying to work as long as I can and garner as many raises as I can before I eventually crash to the point of needing long term disability with the hope it'll actually be enough to live on. I was past the point of believing we had any hope of a cure/treatment in my lifetime, though the fact that the tables might finally be turning in the right direction leaves me a little bit of hope... not something I've had for a really long time.