I think my CFS is gone....back to work?

[JD1979]

I have had CFS for the last year, during which time I have not been able to work most of the time. Over the last 3-4 weeks I have felt a lot better, so much that I am considering going back to work. Over the last month or so I have almost never felt fatigue or tired, and I have been out running everyday without getting any of my symphtoms back. I have been offered a job abroad which will be both long days and hard pressure. Do I tell my new employer about my situation before I acept the job? Is it a good idea to accept the job?

Is this just a crazy idea? Am I just blocking out my sympthoms for a while, and will they come back to haunt me?
I hope for some replies as this is driving me mad.

 

[taniaaust1]

If you had canadian defined CFS, be aware that it isnt uncommon to go throu a remission for a while.. and then get it back again. Dr Cheney and others talks about this being a common pattern and this has also been my experience of this illness (i went into remission for 2-3 years)

It may be a crazy idea to go from not working at all.. into a full time job. It would be much better if you can work your way up in hrs (giving yourself 2-3 weeks each time to make sure the new amount is fine).

best luck

 

[Adam]

I had 2 periods of remission each lasting around 3 months in the first two years. Then it came back. I am now so disabled I qualify for higher rate (DLA) mobility, which is very hard to get here in UK believe me. So please be careful. Don't run as they say before you can walk. I was forced back to work for the money when I should have been resting. I now rest at my leisure and have been fo the last 10 years.

take very good care of yourself

 

[Esther12]

I've never felt anywhere near that well since getting ill, but if I did, I'd be eager to get on with things and get to work.

I really don't know what to advise, but it's great to hear you're feeling so much better, and hope you stay fully recovered.

 

[Wayne]

I have had CFS for the last year, during which time I have not been able to work most of the time. Over the last 3-4 weeks I have felt a lot better, so much that I am considering going back to work. Over the last month or so I have almost never felt fatigue or tired, and I have been out running everyday without getting any of my symphtoms back. I have been offered a job abroad which will be both long days and hard pressure. Do I tell my new employer about my situation before I acept the job? Is it a good idea to accept the job?

Is this just a crazy idea? Am I just blocking out my sympthoms for a while, and will they come back to haunt me?
I hope for some replies as this is driving me mad.

Hi JD1979,

Only you can make a decision of this magnitude. I'll just make a few comments on how I would look at things. First, I would look at "the odds". You can't really know whether you will ever relapse again or not, but it would seem that if you were to go back to work, the odds of you crashing in a job with long hours and lots of pressure would be a lot higher than if you were in a less stressful job.

Second, what if you do "crash" or "relapse"? What kind of flexibility would you have in the job you're considering, as opposed to a less stressful job? Example, what if you came down with the flu? It's these types of things that can trigger a relapse. Being able to take significant time off (let's say 1-4 weeks) might be enough for you to avoid a severe and prolonged crash. Less time than that could leave you in a position of having to go back to work before fully recovering. Is the risk worth it?

I, and many others on this board, have suffered significant relapses from pushing ourselves beyond our limits. Even though many eventual recover to a prior functionality, some never do. There are some wrenching stories out there of PWCs pushing to the point of becoming bedridden and/or unable to speak above a whisper. This is the reality of ME/CFS. I think this is a factor that all of us should keep in mind.

Should you tell you employer? One thing to consider is that your potential will almost certainly NOT understand what you're dealing with. It often takes PWCs years to fully realize what they're up against, so it would be unrealistic to expect a potential employer to understand very much at all. To the degree that they did understand, I would say the odds are they wouldn't want to take a chance on a situation you would describe.

HOWEVER, if they did understand, you might be in a VERY fortunate situation. One where they might be willing to accommodate whatever health situations and limitations might arise. There are a few people in this world who really do care about their employees as much as their business.

Every person is different, and every situation is different. Personally, I would lean toward telling any potential employer as much as I feel they might understand, and then let the chips fall where they may. They may appreciate your honesty so much, that they're willing to take a chance on you and your health just because of that.

All the Best,

Wayne

 

[SickOfSickness]

Wow I don't think you should take on a job with long hours and high pressure! And needing you to relocate and adjust to a new place? Maybe you can do a full time job, but get one that's a bit easier. And give it another 2-6 weeks?

 

[serenity]

wow, that is a tough one. i am lucky not to have to work & have no desire to, but i have to admit when i start having a really good period i do start to think "what if" about whether or not i could work. i always think about how i'd do it & know i would keep it small tho. i am fortunate not to need the income so it would be only what i wanted to do when i wanted to do it - i would be a personal shopper, stylist & closet organizer. so for me, i would only take on as many clients as i felt i could handle. i once thought of opening my own clothes store but it's not really feasable, i don't have that kind of money - so, just very small jobs & sporadic work are all i even think about. & it would be doing something i enjoy.
so, basically for me ... the type of job you are talkin about it out of the realms of what i would ever consider. but that is me & you are you. you have gotten some good advice here, i am sorry we can't help more but it really is your decision. be sure you would be able to back out of the job if you need to, i guess that is all i would say.

 

[caledonia]

The advice I have heard is to spend 6 months or a year doing work-like activity to see how that goes. So it could be something like going to the library every day and doing research for 8 hours a day 5 days a week.

What is your financial situation? Are you on disability?

 

[markmc20001]

Tough one! I'm anxious to get on with life, but very respectful of all the damage I have done by pushing it, or judging my abilities incorrectly. On the surface, sounds like more time is needed to really track your abilities before going and taking on a fulltime stressful job overseas. This illness is so hard to judge and constantly changes for me. I usually overestimate what I can really do and end up trying to tackle the world and fall flat on my face in a few hours.

You may be best trying something part-time or at least closer to home without putting too much pressure on yourself to perform? relocating, new job, new culture, new health, sounds scary to me.

If you are anxious to work, maybe try and avoid putting yourself into a position with too much pressure, or being too committed, where you couldn't easily stop if things didn't work out.....?

 

[goldiland]

JD

I got sick about 12-13 years ago, went out of work for a year and then went back and worked 10 years, ultimately in a senior management position in large public accounting firm. I pushed way past what I should have and relapsed about 2 years ago. I'm finally at a point again where I feel well enough to go back to work, so I can very much understand your concerns. It's a catch 22 situation in terms of balancing trying to have a career and managing your health. I was fortunate that my company had a flexible work program and I was able to come back the first time at slightly reduced hours for a while, but I worked a lot of hours with significant deadlines over the last few years prior to my relapse and the result was a bad crash.

I will say that 3-4 weeks of feeling well isn't close to enough. I'm able to do many of the same things that you are and have spent hours a day reading technical materials in my field. I've been very slowly titrating up over the past six-eight months. You may want to give yourself at least a couple more months and make sure you're fully stable. I also don't know what doctor you see or what your diagnosis was based on, but I would consider getting some tests done and see whether your subjective improvements have translated into your bloodwork. And unfortunately your CFS is not gone... no one fully recovers from this. That doesn't mean you're not going to be reasonably well for a long time but if you look at every study, CFS is the present that keeps on giving. Relapse is very, very common when you push past your energy envelope. Many of us (me included) have high viral titers, cellular immune dysfunction and low NK activity.... so once you push hard for a while, the viruses reactivate, your NK activity doesn't kill everything well and your underlying immune system isn't strong enough to keep things in check. Good luck with your decision and I wish you good health in whatever job you ultimately take.

 

[firefly]

JD,
some great advice on here already. I would add/reiterate:
1) make sure you know what you are dealing with (what are your biomarkers etc.) I highly reommend Nancy Klimas / Irma Rey at the U. of Miami or through her private clinic. If you can get an NK cell profile done, plus look at your hormone levels, and viral titers -- get as much hard data as you can so you have a clear clinical picture. Enlander in NYC is another option, relatively easy to get in, and quite thorough diagnostically.
2) Look into the company's disability policy. Is it good? How long a waiting period is there? (usually a year). Also, do you currently qualify for social security disability? (i.e. trust and hope for the best, but be prepared for other outcomes.)
3) Any possibility of other work options closer to home with less stress inolved? Just a thought. I share the desire of wanting to get back to100 percent work and life. But it sounds like you may be trying to ramp it up really fast.

Great to hear you are feeling well.
All the best to you as you navigate this.

 

[richvank]

Hi, JD1979 and the group.

For those who "go into remission from CFS" and those who appear to be totally recovered, I think that there would be value in routinely taking some maintenance doses of B12, active folate, and N-acetylcysteine as a minimum. I think that taking these supplements would have a good chance of guarding against the redevelopment of glutathione depletion and a partial methylation cycle block, which in turn suppress the cell-mediated immune response and the detox system. While the newly discovered retroviruses and other pathogens do seem to be involved in the whole picture, we don't understand exactly how yet. But in my opinion, there is good evidence for glutathione depletion and a partial methylation cycle block being significant parts of the pathogenesis of CFS, leading to the well-substantiated oxidative stress, and I think these things can be headed off by maintaining levels of these nutrients. For what it's worth.

Best regards,

Rich

 

[slayadragon]

I agree with Rich.

Best, Lisa

 

[onebush]

JD

I got sick about 12-13 years ago, went out of work for a year and then went back and worked 10 years, ultimately in a senior management position in large public accounting firm. I pushed way past what I should have and relapsed about 2 years ago. I'm finally at a point again where I feel well enough to go back to work, so I can very much understand your concerns. It's a catch 22 situation in terms of balancing trying to have a career and managing your health. I was fortunate that my company had a flexible work program and I was able to come back the first time at slightly reduced hours for a while, but I worked a lot of hours with significant deadlines over the last few years prior to my relapse and the result was a bad crash.

I will say that 3-4 weeks of feeling well isn't close to enough. I'm able to do many of the same things that you are and have spent hours a day reading technical materials in my field. I've been very slowly titrating up over the past six-eight months. You may want to give yourself at least a couple more months and make sure you're fully stable. I also don't know what doctor you see or what your diagnosis was based on, but I would consider getting some tests done and see whether your subjective improvements have translated into your bloodwork. And unfortunately your CFS is not gone... no one fully recovers from this. That doesn't mean you're not going to be reasonably well for a long time but if you look at every study, CFS is the present that keeps on giving. Relapse is very, very common when you push past your energy envelope. Many of us (me included) have high viral titers, cellular immune dysfunction and low NK activity.... so once you push hard for a while, the viruses reactivate, your NK activity doesn't kill everything well and your underlying immune system isn't strong enough to keep things in check. Good luck with your decision and I wish you good health in whatever job you ultimately take.

Hi,

I had an eight year remission, thought I had beat it. I crashed again 2 years ago. I know I was doing too much. Be careful, avoid stress especially. I would work for a while at getting my body strong and work on the immune system. I should have been that smart and maybe I would not be back in this mess.

Good luck,
Margaret

 

[slayadragon]

I don't know about the people who've commented on this thread, but one common reason that people crash after a remission is that they move into or go to work at a moldy place.

Unfortunately, once this type of crash occurs, it's very hard to go back. People then have their immune systems go permanently out of whack, viruses and other pathogens set in, reactivity to mold increase, etc. etc.

They also can find it difficult to move to a new place, and getting rid of all their contaminated stuff is something that people are loathe to do.

So being careful to not move into a bad environment may be worthwhile.

Unfortunately, a lot of homes or workplaces can seem fine but have big mold problems. Learning how to judge a good building is something worth doing for us though.

Best, Lisa

 

[kurt]

I have had CFS for the last year, during which time I have not been able to work most of the time. Over the last 3-4 weeks I have felt a lot better, so much that I am considering going back to work. Over the last month or so I have almost never felt fatigue or tired, and I have been out running everyday without getting any of my symphtoms back. I have been offered a job abroad which will be both long days and hard pressure. Do I tell my new employer about my situation before I acept the job? Is it a good idea to accept the job?

Is this just a crazy idea? Am I just blocking out my sympthoms for a while, and will they come back to haunt me?
I hope for some replies as this is driving me mad.

One of the problems with remission is that because CFS lacks medical credibility, a person who has had CFS and then partly recovered, enough to work again, may feel or believe that they are 'better' and back to their old selves. Like someone who gets over a bad infection for example. But that is not the reality of CFS. Sadly, there is not yet a medical category for 'CFS Patient In Remission' (because there are not enough people in that category yet?). I think working after recovery is great, but you must learn your new limits, and there WILL be new limits. I personally would only start working again on a part-time basis, and only at a low-stress job, something you enjoy. I would then watch for a few months and see how things go, learn you new energy window's limits and pace yourself. And be certain to support B12, as Rich suggests. And consider that you will now always be a former CFS patient, that is a life-long label we need to take very seriously.

I have been through this TWICE, did not learn my lesson the first time. When I first had a recovery, after two years of CFS, I went back to my professional life with a vengance, trying to make up for lost time. I even moonlighted, worked two jobs. Really was in denial that CFS is a life-long condition. Anyway, after a year of that I crashed big-time and spent a few years mostly bedridden. Now after almost 10 years of bad CFS I am in my second recovery, I have not recovered full functionality like before but also am not on all the drugs (as I have learned I have P450 problems and am trying to use natural therapies, orthomolecular medicine including methyl B12 have pulled me out this time). So this time I am just working part-time, following the advice I gave above.

Good luck!

 

[jonc]

I'm afraid I agree with all the advice above about being careful, even if you get a long period of time where you feel 100% better. I too had almost complete remission that lasted 6-8 years followed by various crashes.

One thing I would add to the advice about avoiding stress is BE CAREFUL ABOUT EXERCISE. In my case, I think it was pushing myself physically that caused my crash. I don't know if you are an athletically inclined person, but I would advise limiting your physical exertion to things like casual walking, yoga and pilates. Not running, cycling and other high intensity activities, even if you feel like you can get away with it.

 

[gerri]

Well after reading all the posts about the back to work question. I have to ask myself. what now?
I have been ill since Oct 2009 and havent worked since April 2010. The fatigue is ok, but the other symptoms are still there & come & go. My biggest issue is the brain fog, forgetfulness, cant remember what i was going to say etc... I wonder to myself how will I ever work again, when sometimes the simplest thing becomes something I have to think about. Its so frustrating!! feel like an absolute idiot.
I dont think I am in remission, as I have been told you should be symptom free for a good period of time to be able to call it remission. I had the CMV virus, with heaps of stress & I am also diabetic. This is how I became ill. I almost feel guilty being home & sometimes get quite mad at myself wondeering if I am just being "lazy" or is it "the" illness.

any thoughts????

 

[taniaaust1]

Well after reading all the posts about the back to work question. I have to ask myself. what now?
I have been ill since Oct 2009 and havent worked since April 2010. The fatigue is ok, but the other symptoms are still there & come & go. My biggest issue is the brain fog, forgetfulness, cant remember what i was going to say etc... I wonder to myself how will I ever work again, when sometimes the simplest thing becomes something I have to think about. Its so frustrating!! feel like an absolute idiot.
I dont think I am in remission, as I have been told you should be symptom free for a good period of time to be able to call it remission. I had the CMV virus, with heaps of stress & I am also diabetic. This is how I became ill. I almost feel guilty being home & sometimes get quite mad at myself wondeering if I am just being "lazy" or is it "the" illness.

any thoughts????

Try going the part time job.. something you can make fit you eg before i got really sick again, i was doing housecleaning for an agency (highly not recommended due to the chemicals!!) but i was able to do book the clients into my week when i wanted. i could take on how many i wanted and put them in times to suit me and change things if i wished.

The more control you have over whatever job you choose to do, the better. Working for oneself is often a very good option. When my CFS/ME was more minor.. i also did gardening for people. Otherwise .. try working for another but start out SLOW.. and make sure you can maintain that level for at least a few weeks before increasing hrs. If i myself went back into work, I'd start off at only 1-2 hrs per week and increase by only 1-2 hrs more per week more each month if i wasnt getting any worst and wasnt struggling with it.

thou i dont believe in Graded exercise therapy, it can be used with activities to work out where you are at with something like work... you'll find you can cope ok to a certain level and its about finding what you are okay with doing comfortably (this is my own version of how GET should be!)
eg You could try something like the following with work
2 hrs per week 1st month = 8 hrs only first month
4hrs per week 2nd month = 16 hrs second month (one morning a week)
6 hrs per week 3rd month
8 hrs per week 4th month (eg two mornings a week or a full day a week) etc

Having a plan/goal can help stop depression... but have this goal for being able to find out what you can comfortably do, rather then a goal of actually being able to work full time again!! (as that may not happen or it could but at later stage you may relapse... having too high goals which one cant reach, may lead to depression).

slow is the key.. it often takes people years to work out where their activity level currently needs to be... without over doing things. But you can work it out by increasing slow. The Aim is not to go overboard and crash (in which you could be permanently worst) and to listen to your body.

Getting mad at yourself and thinking you are lazy, when you are really sick... means you havent as yet accepted that you are really sick. It can be hard when others dont understand you are ill..and then one is then trying to convince oneself one is less ill then one really is.

Its a good sign you havent been sick for long and are already feeling well enough to possibly start working again. It used to be said that one has the most chance of recovery by slowing down at the beginning of this illness and resting... pushing yourself when one hasnt had CFS/ME for long, usually ends up in disaster. So it is important you still dont over do things.

Im glad you have realised you ARE NOT in remission while still getting symptoms... you are still sick and this illness dont ever forget is an up and down one.. you could be doing well for a few mths, then not be doing as well for a few mths etc .. so there needs to be some room for those downs and not working at a level you are already at your limit with

best luck

(im speaking from the point of one who did work ones way back to having a full life again and got into full remission for several years.. my suggestion is the kind of thing i did.. you will know when you are well again, as you kind of forget you were ever sick).