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

[meandthecat]

For a long time now work has used ALL my energy and I barely coped with cooking, shopping, the usual stuff. I have got to a point now where I can do something for me at weekends and am rediscovering a life. This is great but challenging; I do a walk of about 2 miles along the river, 4 yrs ago it was like climbing Everest and would put me in bed for the rest of the day, yesterday it was pleasant but enough and I still had the rest of the day.

I value the change, I celebrate it, but 4yrs to regain so little? Now many people out there will bridle at this ingratitude and I get that, 4 yrs ago it would have been miraculous, now it is really good, for a fit 80 year old it would be unremarkable. As I improve, the expectations that frame my life change more rapidly than I can so I always feel at the bottom of a hole. As you age normally the expectation is that you will decline and I see that in people around me, I am over 60 and my experience is the opposite though still way short of them.

This is just one facet of a life, the same process happens throughout my life as it is reclaimed, I don't think this is the norm, if it is, life is much tougher than I thought it could be.

I once was stranded on a sand bank less than 100m from shore but the current was lethal, there was grass on top so I waited it out and as the water dropped I waded out to see if I could get across. It was easy till the water was over my knees then the current began to strip the sand from under my feet and I was going to be washed over. I turned to make my way back but the water was pouring from the sand and clawing my way back was hardest thing I had ever done.

Facing the current, all day, every day, that's ME.

 

[Deltrus]

Fulltime? I am struggling working ~12 hours a week. The one job which I have to work 8 hours straight, I get so tired that my breathing and heart mess up. My mind creates some sort of unbearably torturous sensation when I can't lay down when I need to. I'm 23 btw.

 

[meandthecat]

Fulltime? I am struggling working ~12 hours a week. The one job which I have to work 8 hours straight, I get so tired that my breathing and heart mess up. My mind creates some sort of unbearably torturous sensation when I can't lay down when I need to. I'm 23 btw.

Yes ,but I have an unusual job where I get a lot of flexibility. I have minions, which has it's up side and it's down side. Up is where I get them to do things, down is getting them to do it right and making up any shortfall along with all the bitty jobs where it is easier to do it yourself.

The life saver for me was the control, the option to Stop, rest and change what I was doing, at a moments notice or even before I was conscious of needing to.
It is when I am taking my lead from someone else that things go bad, my awareness of my own needs are so easily overwhelmed; then I pay for days or weeks.
The difference between managing and not is like the inch between missing a speeding car and being hit. The consequences of a minor overreaching are disproportionate.

Most of my life not working is spent lying down, active resting, preparing for the next thing. I have learnt how to cope but I hate it, putting on the public face whilst in private..... well......

 

[Andielyn]

@leokitten Okay I know this thread is old, but it's 2:30 am, I work full-time, and as @lnester7 said, hell. I will share more soon. It is comforting to know I am not alone. I only made it through the first page but everything resonates with me. Hugs to you all. ~Andielyn

 

[ScottTriGuy]

I'm currently able to work part-time. But am in constant fear of worsening symptoms and losing that ability.

I've got quite a bit of flexibility with most of my hours - I also do some of my work via skype, so can roll off the couch 2 minutes before a meeting starts and roll back on 10 seconds after it ends. The organizations I work with are non-profits so more empathetic to chronic illness then corporate entities.

ETA: Also, I have a colleague that I work with as our own team on projects, so we can cover for each other - he has mental health challenges but is rarely physically ill - I am physically ill most of the time, but (thankfully) without mental health challenges - we (half-)joke that together, on good days, we equal one healthy person.

 

[Andielyn]

Hi all: It is now 6:05 am, I'm at work and I have read through every single post. Like I said, I know this is a very old thread started back almost a year ago, and maybe each of you are in a different place now--hopefully a better place--but this thread has been one of the most enlightening, albeit frightening, threads I've read here fro awhile.

With each post, there was something I wanted to quote and reply to, but quickly realized that if I did, this would be a book instead of a post.

I work full-time and as @lnester7 said so succinctly, it is hell. I have been in the same job 28 years now and have a lot of vacation + sick time, but the last two years have I have missed so much work, using nearly all my vacation being sick, plus my sick time, plus more time than that. I was formally disciplined and put on notice due to absenteeism. The conditions were, well, impossible and you all would understand that if you saw the specifics. They might as well said, "Go climb Mount Everest in a day, and then tomorrow climb K2 and do this day in day out with no break and we will reevaluate your status in 3 months. Miss a day, your gone."

Mind you, I was always a good employee--and still am when I'm at work. Well maybe not so much now because I slack. My butt in my seat is the more important to the top dogs than the actual work I do.

Meanwhile, like so many of you, I saw a slew of doctors. "Good" doctors. Many things were ruled out. Eventually I ended back up with my PCP taking me seriously and saving my butt work-wise. He put me on FMLA leave to be taken intermittently. That called the top dogs off from going for the jugular. I had 12 weeks to take intermittently for the next year, beginning in October. I had to take all my vacation days first (with the option to withhold 5), could only use those days for the conditions specified in the FMLA (i.e. get the flu or have a medical or personal need of any other type and I'm screwed) and it's all unpaid, save the vacation time I had to use up.

So here it is mid-March, and I have less than 10 days FMLA left and that has to hold me until October. I am getting better--I think--my crashes seem less in duration but my migraines are out of control. Like a lot of you, I don't tell people what's going on except my direct supervisor (who has been understanding--it's the dogs above him calling the shots.)

Like so many of you, I spend what time I have outside of work resting my butt off. My weekends are spent in bed. My house is a mess and I watch the dust accumulating (among other things) and wonder how is the world I am ever going to do this.

I have short-term disability but qualifying for it is quite strict and has to be done with outside doctors of their choosing and well, we all know just how accepted and informed doctors are about CFS/ME. And there is a 6-month waiting period for benefits so I'd have to go 6 full months with no income prior to benefits kicking in. And it doesn't protect my job like FMLA does, do as soon as I would go on disability my position would be eliminated. It's not a guess, I've been told so and encouraged to quit and/or try for disability so the department can not renew my contract and restructure.

Yes, it is hell. One of you said--and others quoted and agreed--one is almost more isolated trying to work. It's so true--I have no ability to carry on a social life of any sorts, even at home with my husband--because work sucks every single bit of energy out of me. Making it through one DVR'd episode of Jeopardy, sitting up in the living room is a good day.

Well, now it is 7:45 am as mid-way through I got pulled away to do a task no one else can do. Back to slacking. It's easier than moving this mound of stuff--literally a mound of stuff, boxes of books--than to do that right now.

~Andielyn

 

[u&iraok]

@leokitten - I hope you hear from many people.

I sometimes feel as though those who are able to work part or full-time are almost more isolated (if that can be possible) than those who at home.
Especially if the mere act of being able to work renders one unable to do anything at other times such as be on the internet. And we often hear that workplaces are not ME-friendly so it is unlikely that patients do much sharing at work about their disease.

Sending good thoughts your way.

Thank you for posting this. I feel fortunate to have mild or moderate ME?CFS (Can't quite figure it out) but all I do is work. Have to watch friends and family do things while I'm just at home laying down. I feel like a robot, cut off from human life. Okay, well, it's not THAT bad, but it's kind of like that.

 

[u&iraok]

I worked for several years while affected, and you got that right.

For my final 2 years of work, I literally had a mattress in the back of my vehicle where I would rest after my commute in the morning, during lunch, and again at the end of the day before I had the strength to drive back home. I used cruise control while moving, and put my car in park at stop lights. I did nothing else but lay in bed. I lived on peanut butter and fast foods as I couldn’t possible fix meals.

Sleep was nonexistent and the stress of having to get up in the mornings was brutal, which compounded the problem.

I would stay in bed until the last minute, wear the same clothes repeatedly, shower infrequently, and make lots of mistakes at work. By the final 6 months, I was laying on the floor at work, calling in sick, vomiting in trash cans, losing control of my bowels, missing more days than not, and drinking coffee by the potful to try to make it thru the day. (nothing creates a social pariah more than poo in your pants, take my word for it. )

As @Denise said, I was more isolated then than I am now, which is homebound, because I can better manage my time and symptoms as needed. Mostly I can sleep whenever I need. It took nearly a year of being bed bound to crawl out of the hole I’d dug myself by pushing too hard to work. I thought working was my only option until it was no longer a choice.

For those still working, I am sorry. It is hell and you are courageous beyond what normal people can imagine. I wish I’d have known when I had gone too far - but by that point I wasn’t thinking clearly enough to make the decision for myself to stop working until I had done long-term (?) damage and was fired from 3rd and final job for lack of performance. Humiliating.

My heart goes out to you workers with ME/CFS.

Wow, I'm so sorry. You need a medal for sheer willpower and tremendous effort.

Getting up at 6:15 feels like hell and two hours in traffic(one hour there, one back) is hard. I nap at lunch on a couch in an empty office and lay down when I get home. I cook 2 times a week and eat the leftovers the rest of the week. I can go to one store a week but am more fatigued and achy the next day. I work 30 hours a week: Work Mon, Tues, have Wed off, work Thurs, Fri so that Wednesday off is a lifesaver.

I've been doing the same thing for years and years so that's how I can do it. Some times are busy and stressful but a lot of the time I get my work done and have time to work slow or veg.

Sounds like I have it a lot better than a lot of others.

 

[SDSue]

Wow, I'm so sorry. You need a medal for sheer willpower and tremendous effort.

Getting up at 6:15 feels like hell and two hours in traffic(one hour there, one back) is hard. I nap at lunch on a couch in an empty office and lay down when I get home. I cook 2 times a week and eat the leftovers the rest of the week. I can go to one store a week but am more fatigued and achy the next day. I work 30 hours a week: Work Mon, Tues, have Wed off, work Thurs, Fri so that Wednesday off is a lifesaver.

I've been doing the same thing for years and years so that's how I can do it. Some times are busy and stressful but a lot of the time I get my work done and have time to work slow or veg.

Sounds like I have it a lot better than a lot of others.

Thanks. I think we all need medals for sheer willpower! This condition is brutal and requires nothing less! I wonder if it’s our willpower that does us in, and why this disease gets the best of those of us that push the hardest?

I’m sorry to hear how you have struggled, too. Every level has it’s own challenges. My heart goes out to those still working - I hope none end up pushing too far, like so many of us have done.

 

[Battery Muncher]

Wow, I'm so sorry. You need a medal for sheer willpower and tremendous effort.

Getting up at 6:15 feels like hell and two hours in traffic(one hour there, one back) is hard. I nap at lunch on a couch in an empty office and lay down when I get home. I cook 2 times a week and eat the leftovers the rest of the week. I can go to one store a week but am more fatigued and achy the next day. I work 30 hours a week: Work Mon, Tues, have Wed off, work Thurs, Fri so that Wednesday off is a lifesaver.

I've been doing the same thing for years and years so that's how I can do it. Some times are busy and stressful but a lot of the time I get my work done and have time to work slow or veg.

Sounds like I have it a lot better than a lot of others.

If you don't mind me asking, how did you get the Wednesday off? Did you negotiate it with your employer?

 

[u&iraok]

If you don't mind me asking, how did you get the Wednesday off? Did you negotiate it with your employer?

Yes, that's exactly what I did. She said she thought I could work my desk in 4 days instead of 5. I had showed previously that I could do a good day's work so she knew I could do it. (Relocated from north to south and things are slower here and also my brain works better in quick bursts.) Get paid less of course but still work enough hours to get medical benefits.

But it does add to the stress on Tuesday, to make sure I finish things up and on Thursday when I come back to more work. Definitely worth having the day off though, I'm very tired by Tuesday evening.

 

[Battery Muncher]

Yes, that's exactly what I did. She said she thought I could work my desk in 4 days instead of 5. I had showed previously that I could do a good day's work so she knew I could do it. (Relocated from north to south and things are slower here and also my brain works better in quick bursts.) Get paid less of course but still work enough hours to get medical benefits.

But it does add to the stress on Tuesday, to make sure I finish things up and on Thursday when I come back to more work. Definitely worth having the day off though, I'm very tired by Tuesday evening.

Thanks for the reply.

Yes, I can imagine it gets stressful Tuesday, but as you said earlier, that Wednesday off is a lifesaver.

 

[meandthecat]

I'm currently able to work part-time. But am in constant fear of worsening symptoms and losing that ability.



ETA: Also, I have a colleague that I work with as our own team on projects, so we can cover for each other - he has mental health challenges but is rarely physically ill - I am physically ill most of the time, but (thankfully) without mental health challenges - we (half-)joke that together, on good days, we equal one healthy person.

During the worst years I had a Number 2 that understood, or at least accepted my limitations and helped keep the show on the road. He moved on and up and I haven't been able to replace that. I am stronger now and can cope and as I pull the place into shape I encounter stuff (skills and knowledge ) that seem new, yet I must have had them to do the job in the first place.
I think I am encountering the boundaries of a damaged mind and the process of repair, it is not learning as I remember it from youth, with a freshness of knowledge, it has a reclamation quality. A sort of pulling stuff out of a muddy hole, washing it off, trying to work out what it did and modifying it to fit the need.

Work is so much more than just turning up, to have it reduced to that for so long and be so ill that I scarcely understood has left this hole. I can cope physically quite well now, the big challenge is mental. It feels like a 'firmware' issue and is really tough because it is integral to my perception of the world, which fluctuates. It undermines confidence, the sort that allows you to move easily through traffic because you know where things are. To know that your perception of the world is faulty and to factor that in is strange but works, I guess that gradually I will recover an easier decision making process.

Each day I become more aware of how much this disease has stolen from me.........................I think

 

[Andielyn]

I made it through a full week of work this week, sort of. Monday I missed a half day and my supervisor let me make it up. I came home tonight, made dinner...luckily it was planned and I had everything ready to go, took care of the dogs, and now in bed. I can't imagine trying to do this for 15 more years. And this was a good week. I had the option to go to a 4 day week, but declined it and am on FMLA and taking it intermittently. I suppose I am too optimistic or just stubborn and think I am going to get better. I am doing better than I was...it seems I am managing my energy better and my PEM episodes are shorter.

I am being pressured to apply for disability. I am reluctant. Again, maybe just foolish or stubborn.

@meandthecat I can relate to everything you wrote. Sure does feel like this disease has stolen so much.

 

[BurnA]

I can't imagine trying to do this for 15 more years.

I can never imagine doing this for any length of time. So i try not to think about it. I only think one day or week at a time. My goal each week is to survive until the end of the week. Then it starts all over again.

 

[Andielyn]

I can never imagine doing this for any length of time. So i try not to think about it. I only think one day or week at a time. My goal each week is to survive until the end of the week. Then it starts all over again.

That's what I try hard to do, too. Thanks for the reminder, @BurnA

 

[geraldt52]

I am being pressured to apply for disability. I am reluctant. Again, maybe just foolish or stubborn.

Be very careful about cutting back your hours to try to keep working. Everything I did to keep working was used against me by Social Security when I finally applied. If you demonstrate that you can work part time and survive, Soc Sec is only required to consider available part time work in your claim.

Make sure you have a supportive doctor, talk with a disability attorney, make your decision to stop working, and immediately apply for disability. Don't rely on a single word that anyone employed by Social Security says to you.

 

[Mel9]

I made it through a full week of work this week, sort of. Monday I missed a half day and my supervisor let me make it up. I came home tonight, made dinner...luckily it was planned and I had everything ready to go, took care of the dogs, and now in bed. I can't imagine trying to do this for 15 more years. And this was a good week. I had the option to go to a 4 day week, but declined it and am on FMLA and taking it intermittently. I suppose I am too optimistic or just stubborn and think I am going to get better. I am doing better than I was...it seems I am managing my energy better and my PEM episodes are shorter.

I am being pressured to apply for disability. I am reluctant. Again, maybe just foolish or stubborn.

@meandthecat I can relate to everything you wrote. Sure does feel like this disease has stolen so much.

It can help a lot if you can find a quiet spot, maybe a locked room, to lie down at lunch time rather than sit at a table eating your lunch

 

[Andielyn]

It can help a lot if you can find a quiet spot, maybe a locked room, to lie down at lunch time rather than sit at a table eating your lunch

Most days I skip my lunch to shorten my day. I work in a position that I have some flexibility, and I shifted my start time to 10 a.m., because mornings are so hard. Sometimes I can make it by 9. One night recently was so bad insomnia wise, I just finally gave up, and went in at 5 a.m. and worked straight through, came home and collapsed. I have on occasion closed my office door and put my head on my desk. Whatever it takes.

 

[Andielyn]

Be very careful about cutting back your hours to try to keep working. Everything I did to keep working was used against me by Social Security when I finally applied. If you demonstrate that you can work part time and survive, Soc Sec is only required to consider available part time work in your claim.

Make sure you have a supportive doctor, talk with a disability attorney, make your decision to stop working, and immediately apply for disability. Don't rely on a single word that anyone employed by Social Security says to you.

This is super advice @geraldt52 . I can see how those efforts would work against one, but not sure I'd have realized it. Thanks.