Working with Moderate CFS?

[Davsey27]

If you have Moderate CFS I was curious what kind of work can be done with this?


Energy envelope Baseline
Physical activity:2 hrs of chores divided throughout the day
Mental processing tasks-15-30 minutes followed
by 1.5-2 hrs of rest

Socializing-30 mins to an hour divided throughout the day

Generally if I follow the suggestions of a 1:3 to 1:4 rest to activity ratio I do ok.This had gotten me out of bedridden CFS when I got cfs close to 2 years ago and then sort of stayed close to the same.I am 34.

Thank You

 

[Dechi]

Hum. I consider myself moderate and as much as I would love to, there is no chance I would be able to do any kind of work.

I know some people who are mildly affected can work, but it takes them all the energy they have and they spend all their free time resting or sleeping, They have no life besides working.

 

[Davsey27]

Hum. I consider myself moderate and as much as I would love to, there is no chance I would be able to do any kind of work.

I know some people who are mildly affected can work, but it takes them all the energy they have and they spend all their free time resting or sleeping, They have no life besides working.

Are you sure of this? Not even a couple hours a day part-time doing something you enjoy?

Thanks for sharing Dechi

 

[maybe some day]

Self employed is the only way I can manage. When I was 80%, I felt I could work for someone else, but even that was a stretch. They say 75% of ME folks cant work. I feel that is a far higher number

 

[Dechi]

Are you sure of this? Not even a couple hours a day part-time doing something you enjoy?

Thanks for sharing Dechi

I’m very, very sure but I’m only speaking for myself. Others might be able to manage a part-time job, but those who do might be mildly affected rather than moderately.

The thing is, I might be capable of doing a little bit of light (nothing physical) work on occasion, but it’s impossible to know in advance when. I might start on a certain day, then crash the next day for two weeks. I would be highly unreliable and the delays would be huge. I need to do things very slowly, on my own term. This is not compatible with having a job.

On top of this, most mornings I feel like crap, then afternoons are a little better but I sometimes sleep 2-3 hours. Evenings are okay as long as I don’t have too much stimulation. Sometimes I feel like going to bed at 7 pm but force myself to wait until 9.

I wish I could work, really.

 

[AnnieT]

Perhaps it depends how predictable your symptoms are, ... if anyone has predictable symptoms! When I consider myself moderate or even mild, I will have a great week, and then 2nd week feel like I have caught a virus, then feel better, then dizzy spell from no where, and so it goes. I tried to work many many years ago but found the prospect of having to call in sick often really stressful. I find self employment better.

But, if it is something you feel you can manage and enjoy then give it a try. Everyone is different and some people have a small job.

 

[Sickandtired36]

I consider myself moderate CFS only because I have learnt to manage it over the past 20 years. I know what my body can handle physically and mentally. Therefore I can manage to work part time, which is 3 days a week that is thankfully an admin job where I sit at a computer/desk most of the time and is only 10 minutes from home.
But in order to work those 3 days it means that I don’t do anything but rest the other days of the week.

 

[lenora]

think this is very difficult for most of us. Sure, who wouldn't want to work? Even now at age 73 I have the occasional dream of returning to work. I never received anything in the way of Compensation....rules were very different 34 years ago, and yet I still think about working. What does that tell us? There is something nice about getting dressed, accomplishing something, learning and socializing. So what does that tell us? That it sure beats staying in bed or on the sofa all day long.

I know it will never happen now, but then we all have to determine how much of ourselves we can put forth. Also, I don't know that there is any answer between mild or moderate. After all, that can change in a very few days or even week by week. If I grocery shop it can take me from mild to moderate or even beyond that point. Some days I don't even have the energy to talk to my daughters on the phone; other days I can't wait to hear their voices. And this is from someone who has been living with this for all these years. Just because you're in bed doesn't mean you're sleeping. This is one of the things that makes it so difficult for us to get a proper diagnosis...and that's just one of them. Best of luck. Yours, Lenora

 

[Davsey27]

Self employed is the only way I can manage. When I was 80%, I felt I could work for someone else, but even that was a stretch. They say 75% of ME folks cant work. I feel that is a far higher number

Thanks some day

I was curious what kind of self employment do you do and reccomend that can be done in person or online?

 

[Alvin2]

Are you needing to work because your financially insecure?

 

[Davsey27]

Are you needing to work because your financially insecure?

Yes, so I dont continue to be a burden on my parents

 

[maybe some day]

I would see if a local animal shelter is hiring. Mentally, dealing with animals can be rewarding. Unless the hearing is sensitive, its worth a shot

Maybe some clerical work at a church.

Just thinking of ideas where its mentally easier to cope, which can be a huge divden

 

[Alvin2]

Yes, so I dont continue to be a burden on my parents

I understand but how sustainable is it?
And if you make your condition worse would that be worth it?

 

[Booble]

Working from home with flexible schedule is the best route. Do you have any friends or friends of family that have or manage a business that might need some extra help with something you can do from home?

 

[Davsey27]

I understand but how sustainable is it?
And if you make your condition worse would that be worth it?

@Alvin i hear what you are saying

There is this cultural belief that as a man you should be independent and provide for yourself that I struggle with.I understand this evolutionarily as it keeps society going.

My family expects great things from me being a college grad and to someday support myself.

Yes it makes sense what others are saying about this
condition not being linear.Once can pace and still
relapse.Sort of what i am feeling now.Hopefully
It is just PEM.This condition is unpredictable.

Thanks

 

[Booble]

It's tough. It's embarrassing to feel like we are weak. As if that somehow says something bad about us.
I've spent most of my life hiding that I feel like crap most of the time and coming up with work arounds. I know how lucky I have been to be able to do that whereas others have had long stretches where it becomes impossible.

 

[Booble]

Davsey, do you have any interests or skills or things you are particularly good at? Maybe we can come up with some ideas for you. (I used to be a recruiter back in the day...)

 

[Davsey27]

Yes interests include helping others,teaching and playing golf,inner work,meditation,health,wellness and nature.

Thank You Booble

 

[Booble]

What comes to my mind with your interest in teching, helping others and wellness is maybe helping write or edit some wellness type articles. Are you confident in your writing ability?

 

[Davsey27]

I would say that my writing skills are good when I can take the time to focus and have some clarity.

This is something I am willing to work on if it means having a better life, an opportunity to help myself and have an impact on others.