• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

When do you know you are ready to go back to work (full-time)?

Messages
47
Hello,

I want to know how I can know if I would be able to hold a full time job. Right now I feel pretty good but I dont want to make the same mistake as before. I quit jobs twice because I could not keep up. But this was before and I did not know how to manage my CFS as much as I do now, and I'm now in much better shape.

To give you and idea of my physical condition here is what I'm able to achieve EVERY DAY:
I can RUN 45 min a day all at once + 20 min walks twice a day.
I can also do all the daily chore such as going grocery shopping, cleaning up the house etc... easily. It's not a problem at all anymore.
I can meet with friends daily to have conversations.
I can go eat outside, to the theater, museum etc etc.. 3 times a week without any problem.
I have no focus problem and no brain fog.

If I go back to work I will obviously dramatically reduce my runs and walks. The energy I spent running will be spent working.
I dont do a physically tiring job. I work behind a computer but it can be stressful.
Do you think that I would be able to go back to work full time and hold on to my job given what I am able to achieve now?

Thanks you very much for your help
 

caledonia

Senior Member
The advice I have heard is to doing something that simulates a full time job for about 6 months or so, and see how it goes before attempting work. So that would mean getting up and going somewhere and being on the computer for 8 hours a day, 5 days a week. Maybe some kind of volunteer work?
 
Messages
47
Hello,

That's what I'm sort of doing with my daily walks and stuff.
I mean I wake up at 6am and pretend I'm going to work so I walk 20min then I'm active all day long doing things. And around 6pm I do another 20min walk pretending I'm going home.
But does someone knows at what level of daily activity we could be able to manage a full time job? Like if you are able to run for 1hour daily you could then manage a full time job...

Thx
 
Messages
47
Location
Colorado
Jeffy14-
Your functioning level is so far above mine that it's almost impossible for me to conceive of at this point. I wish you the best of luck and am eager to see what kinds of replies you get to this question. My experiences with CFS and working full-time were disastrous and contributed to the severe level of disability I have now, but I probably did almost every wrong thing you can think of when working a full-time job with CFS.

I was in education when first coming down with CFS (mine was slow onset). I was able to work a full day all school year, and would feel terrible by the end of the school year, but by the end of the summer break would feel "normal" again. As the disorder progressed, I would start feeling really bad earlier and earlier in the school year until I was basically feeling poorly right after starting work each new school year. Towards the end of my ability to work, I was unable to heal at all during the summers and would start the next school year feeling as poorly as I ended the previous school year. I am now almost homebound and unable to work outside of the house at all. This is the price I paid for trying to work full-time with CFS.

What I guess I am saying is, given my experience, is to proceed very cautiously, or you may end up getting much worse. Even though you may be able to work full-time, there will be those times where you'll have to overdo it, the regular job obligations that aren't any big deal for a healthy person, but are HUGE if you're not, such as going to work after a bad night's sleep, putting in extra hours or taking work home, eating more fast-food or less healthfully, preparing for and attending stressful meetings, etc.

If you do go back to work, maybe you could have a plan for dealing with the day-to-day requirements of the job, as well as the extra, unexpected stressors, that would keep you within the limitations of your CFS, as well as a back-up plan that would enable you to keep your job (telecommute?) if you crashed.

Good luck with it all.
Alice
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Running 45 minutes a day is better then most 'normal' people. How long have u been functioning like this? If u have been doing this for 6 months should be enough time to know if its a really good up period as it would normally be followed by a crash, but if its a constant for a good period of time well i would say u have just about recovered. Maybe need to have something in place just in case u have a crash like extra leave to rest up etc or be able to cut back hours and work part time if need be.

Anyway, good onya for making such progress,
cheers!!!
 
Messages
24
I'd second the idea of volunteering for at least several months. I don't mean a few hours a week, I mean a full 40 hours each week, every week. Running doesn't simulate the workplace, doing a job at a non-profit may. If you can successfully handle going to "work" day-in, day-out for a significant length of time, you are ready to begin your job search.

As an added bonus, you will have helped whatever cause you choose and you will have references and a positive work record to show you potential employers.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Hi Jeffy

You are obviously in very good shape compared to most people here. What you are able to do in terms of excercise is far more than an office job would demand from you. But then on the other hand it's still a different situation, so of course you can't be 100% sure you will tolerate it as well as what you are doing daily now.
If you can find a part time job first, to start with, for some time, i would do that. And then go back to full time if you see and feel that you are able to do it for half a year or so, like others have suggested.

Would you mind sharing a bit more of your story? It really sounds like you have recovered very well.

Eric
 
Messages
47
Hello everyone,

First I want to thank you for your answers.
I did improve my health greatly. What works for me is Graded Exercise. It really made a difference.
But I just want to say that I'm worried to go back to work because last time it caused me a relapse. Let me explain:
I was doing Graded Exercise and was in pretty good shape. I was able to do anaerobic exercise like push ups, run 1 hour every other day etc... But I blew it when I went back to work full time and tried to keep the same amount of sports I was doing. I did not know as much as I know about CFS and I did not realize that working full time would count as energy depletion (and CFS people have a limited amount of energy that we try to increase) since I was able to do all this sports. Furthermore, when following the first program I did not take care of house chores, grocery shopping and stuff. I was much less active than now. Instead of having worked a full time job + sports I should have cut down on sports dramatically to replace it by full time work. As an idiot that I am I pushed myself for 2 months until I totally stopped sports and ultimately stop working after another 3 months. From there I was in very bad shape. I took a one month break and tried to go back full time but I lasted only 3 month (and it was hell). During those times working I was not even the one handling house chores, groceries etc... I would just work and go home to lay down to rest when work was over.
So anyway, I slowly built up my energy over 6 months to be where I am now. I just when to mention that when I stopped sports to try to keep up with my job, I slowly lost my capacity to handle exercise. Then, I would rapidly experience post exertional malaise after a few minutes of stretching or the slightest anaerobic exercise... So I was back to square one....

Now I'm clearly able to achieve much more than before but I know that I am not recovered and when I'll start working full time I wont be able to keep up with both. I just want to be sure I'll just be able to manage a full time job with the stress related to it and the little "extras" (as ALiceZ mentioned) inherent to a full time job.
This time, I improved my helth in trying to be active as much as I can in my house daily (but very cautiously of course). Active does not mean necessarily means cleaning stuff in the house, but rather not lying in my bed for months as I did before (it lead me nowhere).
Graded Exercise as prescribed by my CFS doctor was great for me. He wanted me to pick a sport ( sport as defined for CFS people as slow walks etc...) and do it everyday (even on very bad days). It seemed crazy to me. So anyway, I picked a length of time I thought I could walk everyday without any problem then reduce it. So I started at 10min of slow daily walks. I increased time by only 10% each week (to be honest I increased a little more because I felt clearly able to do it, the doctor told me that he I could increase by more if it does not cause any bad symptoms). After 45 min I increase time and intensity and I was able to bike and row. Now I can reduce volume and focus on increasing intensity with anaerobic exercises. I also took some supplements like D-ribose, vitamins B12 et Bcomplex, Omega 3, Coq10, magnesium. TO be honest I dont know which one really worked but I read on the internet that they could be helpful. I think the ribose really works and I noticed my sleep improved with the vitamins Bs when I was very stressed and exhausted. Since I took them all at once I cant really tell but it's worth trying. I also did meditation everyday and very healthy diet.
I just want to say that before starting the exercise plan I would have never been able to tolerate all this. It was light years away from me. Especially anaerobic exercise, just 3pull ups or push up would cause post exertional malaise and I would spend the next 3 days in bed. Now I can handle 15 without any problem. Aerobic exercise was less an issue for me but still at some point in my life a 20 min walk would cause me the malaise... So it really worked for me.
I know I'm not cured because I still have "the wired" thing when I get really angry or things like that. But my tolerance is much higher than it used to be.
Just for info, my CFS developed gradually while I was a university student. I was doing lots of sports (intense weight lifting + martial arts everyday) and I went through a lot of family and money problems. My health slowly deteriorated and I went through overtraining. I used to crash regularly and spend an entire week in bed. I finally quit everything I tried to rest for 4 months but it did nothing. I did not know what I had until I find the right doctor who prescribed this to me. I provoked my CFS through overtraining and I know other people who had the same experience as me. Of course overtraining alone was not the only cause, but the amount of stress I went through and for so long on top of my over training was too much for my body to handle.
I hope you will find this helpful.
I will see for volunteer work but I cannot afford not to be paid ... If I'm not able to start a job now I'll have to go back to live with my parents and leave my fiancee and stuff.... It really sucks. I just hope I'm ready for full time or at least part time.
 
Messages
47
Location
Colorado
Jeffy-

It sounds like to avoid moving in with your parents you might just have to try working and see what happens, but in order to avoid a relapse maybe try to find a part-time job or one with flexible hours or a work-from-home job. Maybe you'll have to settle for a job outside of your career area or at a lower pay so that it fits your CFS requirements. Since you've already relapsed a couple of times after going back to work it may be that you cannot handle a full-time job in your chosen career under any level of fitness with CFS. Also, you may not be able to handle any of the household chores, grocery shopping and stuff while working without triggering a relapse. Any "extra" energy you have outside of the job itself may have to be devoted to maintaining a reasonable level of Graded Exercise to prevent relapse.

I wonder if there's maybe a thread on a different forum category (Lifestyle Management? Finances, Work and Disability?) where someone has already brought up your question. If not, maybe you can start this thread again on one of those categories and get more responses from folks who are higher-functioning like you.

Your Graded Exercise story is very interesting. It's nice to hear when it helps people because I hear so much negative stuff about it and CFS. I, too, did Graded Exercise on my own for several summers as my CFS was developing without knowing that was what I was doing, and I also found it helpful. I exercised at a much lower level than you, though. I would try to continue maybe 1/2 hr/day of slow walking on the treadmill (maybe 2.0mph, no incline) after starting the school year. I found that I would have to to quit walking altogether by the third month of working or even earlier in the school year, and that after I stopped walking my condition would quickly deteriorate. I have tried the Graded Exercise again several times after getting too sick to work, and each time I move too fast too quickly and crash and have to stop walking for a while. Then I start up again a few months later. This last time I started at 1.0mph max for 15 minutes, increasing for 2 minutes/walk each month, and have been able to maintain that level of slow increase for several months now, and am at 1.0mph max for 23 minutes now. Even at this extremely low and slow level I have found the movement very useful in maintaining blood flow and slowing down the physical decline.

After you decide what you are going to do, I would be interested in hearing what you decided, how you plan to manage the CFS that is different than the last 2 times, and how it works out. Maybe you could post updates once in a while.

Again, good luck with it all.
Alice
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
From what you said i personally think you are certainly ready for working again.. if you can be active right throu work hrs and be fine.. you should be fine for working (as long as the work isnt more physical or more stressful). I do say this all with a big warning thou.

Many with CFS/ME do get a remission (Dr Cheney talked about this). These can seem like the illness has completely gone away. I myself who had very very extreme bad CFS/ME for a while (the kind of horror stories you read about at times) but ended up having what seemed like a full remission. This remission did last a couple of years.. (I even did a 100km marathon during this remission and didnt relapse from it). The thing is... I ended up getting CFS/ME again :( .

After a few years of it seeming to be gone.. I went all normal.. stopped listening to my body etc etc... and one day out of the blue.. crashed again!! then crashed a second time a few weeks or month or so later before i was fully over the first minor crash. I havent recovered since from that (thou im no where as near as bad as my original completely bedbound CFS).

Now im on disability and cant even work part time several years after those other crashes happened... I cant even always even go shopping now. (I actually collapsed last week in a shop onto the floor due to CFS/ME.. it wasnt my POTS that time, my legs just got to weak and tired to hold me up while trying to pay for a chicken so they both gave way and i couldnt then restand).

best luck.. but ALWAYS listen to your body and if you feel your CFS/ME symptoms start to come in, DO NOT ever think it wont come back.. You may need to take day off of work, do not ignore it cause you see it as a part of your past (you will try to blank it out when you move on from it and put it behind you). I wish you the best.
 

lancelot

Senior Member
Messages
324
Location
southern california
Can you tell us your secret for getting well from CFS/ME? thank you!

Edit: just read your other post. graded exercise therapy and supplements? been there done that but no good for me! Like you, i was passionate about working out and bodybuilding for the last 20 years. Can i have the name and number of your CFS doctor?
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Hi Jeffy

One more thing i would like to know... how well do you tolerate sitting/being in an upright position? Can you go like this all day?
What you are able to do sounds quite impressive, but to work in an office means doing mental work while sitting, and in a rhytm that is dictated to you, meaning that you can't pace yourself the way you like or your body needs, but that there are other people calling you, emailing, faxing whatever. Rather than doing phyisical activity and then having time to recover at home, without anyone bothering you.
 
Messages
57
Location
Seattle area
It looks like you're in good physical condition. But I haven't seen it addressed so .... what about the mental and emotional demands/ stress of working? Are you going to do a job that is primarily physical? I worked in engineering for years and there are continual mental/ emtional demands.

Schedules set by someone else that may not be realistic, difficult co-workers or customers, multi-tasking all the time. This is all a lot different than physical training every day. You'll have to be able to deal with all this and stay focused and have a great deal of patience. If the brain fog sets in, you'll end up in a very stressful situation.

I'm not sure what your disability situation is, but part time work can really backfire with disability since it resets your standard work week and base pay.

The idea of volunteering seems like a good one. Maybe the best test would be a full time volunteer job that requires a lot of multitasking.

If you decide to give it a try, I hope it goes well. You'd be doing something we'd all like to be able to do.
 
Messages
47
From what you said i personally think you are certainly ready for working again.. if you can be active right throu work hrs and be fine.. you should be fine for working (as long as the work isnt more physical or more stressful). I do say this all with a big warning thou.

Many with CFS/ME do get a remission (Dr Cheney talked about this). These can seem like the illness has completely gone away. I myself who had very very extreme bad CFS/ME for a while (the kind of horror stories you read about at times) but ended up having what seemed like a full remission. This remission did last a couple of years.. (I even did a 100km marathon during this remission and didnt relapse from it). The thing is... I ended up getting CFS/ME again :( .

After a few years of it seeming to be gone.. I went all normal.. stopped listening to my body etc etc... and one day out of the blue.. crashed again!! then crashed a second time a few weeks or month or so later before i was fully over the first minor crash. I havent recovered since from that (thou im no where as near as bad as my original completely bedbound CFS).

Now im on disability and cant even work part time several years after those other crashes happened... I cant even always even go shopping now. (I actually collapsed last week in a shop onto the floor due to CFS/ME.. it wasnt my POTS that time, my legs just got to weak and tired to hold me up while trying to pay for a chicken so they both gave way and i couldnt then restand).

best luck.. but ALWAYS listen to your body and if you feel your CFS/ME symptoms start to come in, DO NOT ever think it wont come back.. You may need to take day off of work, do not ignore it cause you see it as a part of your past (you will try to blank it out when you move on from it and put it behind you). I wish you the best.

Damn your story is sad :(
Thx for the advices. I wont forget.
 
Messages
47
Jeffy-

It sounds like to avoid moving in with your parents you might just have to try working and see what happens, but in order to avoid a relapse maybe try to find a part-time job or one with flexible hours or a work-from-home job. Maybe you'll have to settle for a job outside of your career area or at a lower pay so that it fits your CFS requirements. Since you've already relapsed a couple of times after going back to work it may be that you cannot handle a full-time job in your chosen career under any level of fitness with CFS. Also, you may not be able to handle any of the household chores, grocery shopping and stuff while working without triggering a relapse. Any "extra" energy you have outside of the job itself may have to be devoted to maintaining a reasonable level of Graded Exercise to prevent relapse.

I wonder if there's maybe a thread on a different forum category (Lifestyle Management? Finances, Work and Disability?) where someone has already brought up your question. If not, maybe you can start this thread again on one of those categories and get more responses from folks who are higher-functioning like you.

Your Graded Exercise story is very interesting. It's nice to hear when it helps people because I hear so much negative stuff about it and CFS. I, too, did Graded Exercise on my own for several summers as my CFS was developing without knowing that was what I was doing, and I also found it helpful. I exercised at a much lower level than you, though. I would try to continue maybe 1/2 hr/day of slow walking on the treadmill (maybe 2.0mph, no incline) after starting the school year. I found that I would have to to quit walking altogether by the third month of working or even earlier in the school year, and that after I stopped walking my condition would quickly deteriorate. I have tried the Graded Exercise again several times after getting too sick to work, and each time I move too fast too quickly and crash and have to stop walking for a while. Then I start up again a few months later. This last time I started at 1.0mph max for 15 minutes, increasing for 2 minutes/walk each month, and have been able to maintain that level of slow increase for several months now, and am at 1.0mph max for 23 minutes now. Even at this extremely low and slow level I have found the movement very useful in maintaining blood flow and slowing down the physical decline.

After you decide what you are going to do, I would be interested in hearing what you decided, how you plan to manage the CFS that is different than the last 2 times, and how it works out. Maybe you could post updates once in a while.

Again, good luck with it all.
Alice

Hello,

Yes I think a part time job is the best solution. For a couple of month see how it goes.
Im just wondering if you should not start ower in your exercises? 5min instead of 15.

Other than that I'm not the worst case of CFS and I'm still young (27) so those may be factors that helped me improve my health.
THanks again! I'll keep you updated.
 
Messages
47
Can you tell us your secret for getting well from CFS/ME? thank you!

Edit: just read your other post. graded exercise therapy and supplements? been there done that but no good for me! Like you, i was passionate about working out and bodybuilding for the last 20 years. Can i have the name and number of your CFS doctor?

Hello,

My doctor is Doctor Jean Cabane. He is a CFS specialist in Paris, France (I'm from France but right now I live in the USA).
He works at the Hpital St Antoine – 75012 Paris.
He did not tell me about the supplements (I dont think he belives in it). But he wanted me to do the exercise therapy.
I dunno where you live but a public visit to him is cheap (I dunno how it works for foreigner but as a French it was free but you have a 2month wait a least and he does not spend a lot of time with you if you take an appointment).
Private visits are around 100euros. It's better than public honestly.
Let me know if you need more info
 
Messages
47
Hi Jeffy

One more thing i would like to know... how well do you tolerate sitting/being in an upright position? Can you go like this all day?
What you are able to do sounds quite impressive, but to work in an office means doing mental work while sitting, and in a rhytm that is dictated to you, meaning that you can't pace yourself the way you like or your body needs, but that there are other people calling you, emailing, faxing whatever. Rather than doing phyisical activity and then having time to recover at home, without anyone bothering you.
I tolerate well sitting in an upright position.
But working id different as you said :)
It can be stressful etc...
A part time job seems the best solution
thank you!
 
Messages
47
It looks like you're in good physical condition. But I haven't seen it addressed so .... what about the mental and emotional demands/ stress of working? Are you going to do a job that is primarily physical? I worked in engineering for years and there are continual mental/ emtional demands.

Schedules set by someone else that may not be realistic, difficult co-workers or customers, multi-tasking all the time. This is all a lot different than physical training every day. You'll have to be able to deal with all this and stay focused and have a great deal of patience. If the brain fog sets in, you'll end up in a very stressful situation.

I'm not sure what your disability situation is, but part time work can really backfire with disability since it resets your standard work week and base pay.

The idea of volunteering seems like a good one. Maybe the best test would be a full time volunteer job that requires a lot of multitasking.

If you decide to give it a try, I hope it goes well. You'd be doing something we'd all like to be able to do.

Hello and thank you,

I work in finance so I'm behind a computer all day long and I need to be focused. It can be stressful too
I never had brain fog.
I dont have any disability, I live with what I saved. I finished school 1 year ago so I dont have much.
I know mental fatigue is as bad as physical.
I have a masters in finance and I'm only 27 with 1y experince. I never worked part time but from what I see on websites like Monsters, the only part time job i'm gonna find is cashier in a bank... not very cool and not the best salary.
But if this is what it takes then I think I should go for it.
 
Messages
11
The people I know who have returned to work successfully havedone it very part-time at first. Half day, half days, full day plus half day etc etc. After 6 months one was sure that she could return to work full time as a nurse/in a medical capacity.

I understand that our energy budget comes in several sections physical, emotional, social, cognitive. We will not improve on all these levels at once. If your job can be stressful you might want to consider which of your energy budgets/areas is likely to be stressed, and how strong you honestly reckon that area is. You know what was the problem when you returned to work too early before. If you feel you can manage that then and have an understanding employer then have a go.

I feel that my body tells me when I can take on another task or area of activity. I listen, and take it very steadily and seem to be slowly improving. I wish you the best of luck in successfully returning to work. Let us know how you get on.