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

[Sidereal]

There came an exact day, now etched in my brain - a final collapse, when I left the office and knew I’d never return. Getting to that point was pure Hell.

I remember that day very clearly too, the weather, the struggle to get home in a severe ME collapse, everything. I had a strong feeling I wasn't getting outta bed after that one and so far I've been right about that.

Sorry to hear you've been to that place.

 

[Strawberry]

What is life like for me working full time? What is "life"?

I am fiercely independent, so I truly hope I can continue working, but it is extremely difficult. I can't go grocery shopping (yay for online shopping and delivery!), and if I do go shopping I can never get everything on my *extremely short* list before I have to get out or risk collapsing. And thankfully, I have some great kids (adult) in my life that know how far I have fallen in the last few years, and are now stepping up to help me with chores. It helps them cover rent and education costs, and the house looks better. So I now pay for things to be done for me.

I have recently learned that I have been in a constant state of PEM, and am now just forcing myself to learn to accept help. It hasn't been easy! But I am tired of this achy, sick feeling, and I realize this is what I must do, or risk losing all I own and watch my kid not get to graduate. So now I'm lazy.

Many friends don't understand what happened to me, so I have few friends now. Probably good, as I don't have people inviting me to events that will completely wipe me out. So now I'm boring.

So what is life like working full time? I'm proud I earn a living, and I love my job. But I have had to give up so much pride and learn to ask for help. And I know I risk getting worse. I've been burning the candle at both ends for a long, long time, and I am TRYING to extinguish the flame in one wick. So I am adjusting.

And to sum it all up:

If life seems jolly rotten
There's something you've forgotten
And that's to laugh and smile and dance and sing
When you're feeling in the dumps
Don't be silly chumps
Just purse your lips and whistle
- that's the thing.
And...always look on the bright
side of life...
(Whistle)

Life's a piece of shit, when you look at it
Life's a laugh and death's a joke, it's true
You'll see its all a show, keep 'em laughin as you go
Just remember that the last laugh is on you

And...
Always look on the bright side
of life...
(Whistle)

 

[leokitten]

That's exactly what I feel like, couldn't put it better. With full time work I'm in a constant state of PEM with some weeks better and some way worse.

I spend the entire week working and then trying to eat and rest after work and shutting down so I can make it through the next day... and every week like clockwork as the work days go by it builds up, the pain, the flu, the aches, the cognitive issues, the fatigue and weakness, the GI problems, the litany of other symptoms and by the weekend I am preying for it to stop

I then spend the entire weekend in or around the bed, completely obliterated and trying to recover enough so I can make it through the next work week. And then the cycle starts again and again and again. If I'm counting right I've been doing this cycle 28 months = 122 weeks

I'm writing this from bed on a beautiful Saturday where everyone is outside and I'm stuck in a prison inside because I'm too sick to go out and enjoy life and know if i don't rest I won't make it through the next work week. And trust me I've tried just ignoring the disease and say fuck it I'm going to enjoy my weekend and I then would just pay an even bigger price later crashing so hard in the middle of the work week and having to use sick days. You cannot escape CFS.

 

[SDSue]

And trust me I've tried just ignoring the disease and say fuck it I'm going to enjoy my weekend and I then would just pay an even bigger price later crashing so hard in the middle of the work week and having to use sick days. You cannot escape CFS.

This! No escape, indeed.

Ones of my favorite movies is Shawshank Redemption. For me, it's an analogous to our ME/CFS personal prisons. We are crawling thru our own tunnels of sh*t trying to escape, and every time I see Andy emerge into the clean, pouring rain, I hope that we, too, can someday break free and stand victorious in a sweet, cleansing downpour. Makes me cry every time.

You are extremely courageous, leo.

 

[heapsreal]

I call in ground hog day. Just like the movie.

 

[Chris from Tampa]

Thanks, everyone, for your stories.

It's only been four months for me, but I'm on the hardest project of my career and the slippage is starting to be very noticeable. My work partner has been understanding, but that can only go so far, and she basically doesn't trust my work any more. I don't blame her; I don't trust it, either.

We go live in about three weeks and then it will, in theory, get better. Right now, it's so early that I'm not on any treatment. But that might start to change. I got to the rheumatologist tomorrow and maybe he'll try something.

It really angers me to not be able to do the work I used to be able to do and to not support my partner. I feel like I'm letting her and myself down. It's not fun and I'm wondering if I'm ultimately screwing myself by playing hurt.

 

[HRManager]

I am still working full-time. Reduced to 35 hours per week. It is hell.. flat out hell. It takes everything I have to get through every day. I have nothing, or very little, left over for taking care of my home, myself, or any personal life. My cognition, work performance and amount of work have fallen over the last three years to the point that I am in fear of my job (I am a human resources manager).

Lately I have gotten a little relief from Isoprinosine (Immunovir - but bought from overseas) but still am no where close to where I used to be. My pain levels are through the roof right now also (I have fibro also). As I type this I am struggling to keep my eyes open. Today is going to be a rough one.

I have to keep working at this point or I will lose my home. We have short-term and long-term disability through work but it only pays 60% and that is not enough to pay for my home, car etc.

I just keep keeping on and hope a new treatment will help...

 

[*GG*]

I am still working full-time. Reduced to 35 hours per week. It is hell.. flat out hell. It takes everything I have to get through every day. I have nothing, or very little, left over for taking care of my home, myself, or any personal life. My cognition, work performance and amount of work have fallen over the last three years to the point that I am in fear of my job (I am a human resources manager).

Lately I have gotten a little relief from Isoprinosine (Immunovir - but bought from overseas) but still am no where close to where I used to be. My pain levels are through the roof right now also (I have fibro also). As I type this I am struggling to keep my eyes open. Today is going to be a rough one.

I have to keep working at this point or I will lose my home. We have short-term and long-term disability through work but it only pays 60% and that is not enough to pay for my home, car etc.

I just keep keeping on and hope a new treatment will help...

Sorry to hear this, I relate with this so much. Unfortunately my HR dept was likely gunning for me, hope to do discovery on their ass and sue my former employer!

Can you use FMLA to take a day off a week for rest? I used to do that, and helped keep me at work for years, I think.

GG

 

[Jammy88]

I am working full-time (10-11 hrs a day), but my infection is still recent (1.5 yrs). My main issues are related to my legs; apart from this, I'm tired, yes, but I can still make it (I'm young, 27)

Idk how long this will last for.

 

[PennyIA]

Can you use FMLA to take a day off a week for rest? I used to do that, and helped keep me at work for years, I think.

I actually ended up using FMLA to help with my periodic absences as well. Mine was because I was getting grief for too many unplanned absences. So, I had to do the paper work that with my condition being somewhat variable, I needed that flexibility. I technically didn't end up having to do short term disability until I was out for two weeks or longer, which has been rare. But the day-to-day grind has been a killer; and being able to take a day of rest here and there (I think) is part of what has kept me able to stay employed. Well, that and the flexiblity to work from home in my pj's as well.

 

[HRManager]

I actually ended up using FMLA to help with my periodic absences as well. Mine was because I was getting grief for too many unplanned absences. So, I had to do the paper work that with my condition being somewhat variable, I needed that flexibility. I technically didn't end up having to do short term disability until I was out for two weeks or longer, which has been rare. But the day-to-day grind has been a killer; and being able to take a day of rest here and there (I think) is part of what has kept me able to stay employed. Well, that and the flexiblity to work from home in my pj's as well.

This is what I have had to do also. It sucks because I have to use my vacation time to cover the absences... so have not actually had a vacation for a few years.

I wish I could work from home occasionally...

 

[catly]

I wish I could work from home occasionally...[/QUOTE]

Working from home is the only way I could continue to work full time. I am so thankful I have that opportunity, but even with this accommodation, most days are still a struggle.

 

[Woolie]

Interesting - and saddening - to read everyone's posts.

I'm one of the ones still working F/T, and for the most part count myself lucky. I would never compare my situation to someone stuck at home 24/7.

But working with ME means every crash is accompanied by constant anxiety about the work I'm not doing, constant guilt for letting people down, constant worry about who I should tell and what help, if any, I should ask for (without risking my job).

Sometimes I wish could just be allowed to be ill without having all that extra shit piled on top.

I have recently learned that I have been in a constant state of PEM, and am now just forcing myself to learn to accept help. It hasn't been easy! But I am tired of this achy, sick feeling, and I realize this is what I must do, or risk losing all I own and watch my kid not get to graduate. So now I'm lazy.

This is so hard isn't it, @Strawberry! We want to be productive, reliable colleagues, good parents, good partners; the ME turns us into someone we don't want to be.

And as others have said, you end up having crashes because you simply have to do stuff sometimes, even when you know its not wise.

I then spend the entire weekend in or around the bed, completely obliterated and trying to recover enough so I can make it through the next work week. And then the cycle starts again and again and again. If I'm counting right I've been doing this cycle 28 months = 122 weeks

That's powerfully put, @leokitten. I really feel for you - and all of us.

 

[meandthecat]

I do a physical job, I am a gardener, I love the physical work, or I did. It was like a dance, each task had it's own rhythm it's own place in the scheme and when it came together it was beautiful. I manage 6 gardeners it is a big garden with layers of complexity.
I recognise pretty much all the comments above, that I could continue to cope was down to an almost unique set of circumstances.
No HR department so I could finesse my schedule, very little paperwork and no computers. I had done this work for years, the body remembers even when the head is lost. A small staff, so less social stuff and an attitude some might term bloody-minded.
After the first two to three weeks of flu-ish stuff, sweats, hallucination and weakness I could do a few hours each day just to keep it on track thinking I'd build it up as I always had if I'd been ill.

BUT.. you all know, it didn't get much better and then got worse and weird. Muscle aches were one thing but temporary paralysis of arms and legs! Each symptom prompted an accommodation, so weak muscles were spared by changing how I moved, spreading the load over different muscle groups; changing the dance. When a limb stopped working massaging with the other hand gradually unfroze it. I could no longer climb ladders so I worked from the ground and delegated.

Doctors were useless, I thought I was going mad, I was getting weaker, could walk less and ended up having to crawl up stairs. To get to work was; 5 steps to the car, rest; 25 steps to the glasshouse, sit, rest; that was my life. Work, sleep, repeat till the weekend then sleep, repeat.

I'm not a great fan of Tony Blair but the Disability Discrimination act saved my bacon, unable to get rid of me easily I struggled on. With work taking all that I had I went down for 3yrs, there wasn't so much pain in the beginning just everything else, then the Pain.....came.

Doctors shouted me out of the office or ignored me so I did it myself; PR and supplements saved me. What had I got to lose, so I tried everything and it was high doses of DHEA that stopped the slide, then the usual suspects CoQ10, carnatine, and B12 helped alot, It has taken another 7 yrs to claw back most of my mind again with no help from the NHS and what little I could afford for therapy.

I try to work out how I got from there to here; try everything but be very sceptical of those who would profit from your misery. Never give up but don't force it, pacing is everything. I have had to shed everything that is not vital to my life, which has degraded what I thought of as Life to a point of abstraction.

When you are this mentally and physically ill you are vulnerable, you become a target for the opportunist, a mark. I am a big guy but there were times when I was nervous, there's a reason we don't feel like going out when we are sick.

Perhaps controversially I cultivated anger, there's a power in the dark side...yeah yeah, but it worked as a way to stop people treating me like shit. When I say anger I mean a deep burn, I am always polite, why waste it.

To rehabilitate, I started small, little flash games and sudoku and crosswords; got to be the right crossword, I used the Guardian, wouldn't want to end up thinking like a Mail reader....Ugh. Then I re-learned how to cook, following a 3-line recipe was tough to start. Then re-learning botanical latin.......

There are still big gaps and I have bad weeks and I can't walk continuously for long but I am working and in some ways better than I used to be. I don't waste time or energy on anything that is not necessary, I read people better and handle them more directly. I am beginning to be able to remember again and it is like googling for the first time. I am seeing the relationships between plants, the colours in the garden, the textures with a vivid clarity that I don't recall from before.

I have skirted a precipice and I am fortunate but as I pick my way across the face of the cliff my focus is on keeping my footing as much as on the way forward.

 

[Mari66]

Have you tried dramir.com

Have honestly seen people resolved of their problems

Just want to spread the message as it is so beneficial and you have all the right symptoms for your symptoms

 

[Mari66]

Should have said his treatment as last 2 words

Apologies

 

[Ellie_Finesse]

Hi @

That's exactly what I feel like, couldn't put it better. With full time work I'm in a constant state of PEM with some weeks better and some way worse.

I spend the entire week working and then trying to eat and rest after work and shutting down so I can make it through the next day... and every week like clockwork as the work days go by it builds up, the pain, the flu, the aches, the cognitive issues, the fatigue and weakness, the GI problems, the litany of other symptoms and by the weekend I am preying for it to stop

I then spend the entire weekend in or around the bed, completely obliterated and trying to recover enough so I can make it through the next work week. And then the cycle starts again and again and again. If I'm counting right I've been doing this cycle 28 months = 122 weeks

I'm writing this from bed on a beautiful Saturday where everyone is outside and I'm stuck in a prison inside because I'm too sick to go out and enjoy life and know if i don't rest I won't make it through the next work week. And trust me I've tried just ignoring the disease and say fuck it I'm going to enjoy my weekend and I then would just pay an even bigger price later crashing so hard in the middle of the work week and having to use sick days. You cannot escape CFS.

I am the same, I went back to work beginning of September on a phazed return after 8 months off work due to a really bad relapse, it has been a huge struggle! Its like I am in constant PEM with odd days of, what I call normality!

I am a 1:1 TA in a primary school with children that have SEN, (Special Educational Needs). Last week my hours increased from 3 mornings till 12 to adding another 2 mornings till 10.30am.

Am now off again because I couldn't sit or stand for long. I have been crawling up the stairs and bumping down, staggering and bumping into wall to keep myself up. Today hasn't been as bad! I know that tomorrow, if I can stand and walk, albeit doddery, then off to work I will go. Like those of you that are working, I had to make a decision, if I want to work then I have to cut out all activity when not working. My hours will eventually be increased back upto full time, have no idea if this is going to be possible!

I am not sure how long I can keep forcing myself to do this and I hate not knowing what the future holds for me, regarding this illness. I used to be active and healthy with so many plans. I used to cycle min 50 miles a week and was looking forward my first cycling event. Am really struggling to adjust, this is the worset ever relapse I have ever had. In the past it has only ever been mild/moderate!

I have to say it's nice to know that your not alone, this forum has helped me loads in that respect.

 

[Ellie_Finesse]

Hi @

That's exactly what I feel like, couldn't put it better. With full time work I'm in a constant state of PEM with some weeks better and some way worse.

I spend the entire week working and then trying to eat and rest after work and shutting down so I can make it through the next day... and every week like clockwork as the work days go by it builds up, the pain, the flu, the aches, the cognitive issues, the fatigue and weakness, the GI problems, the litany of other symptoms and by the weekend I am preying for it to stop

I then spend the entire weekend in or around the bed, completely obliterated and trying to recover enough so I can make it through the next work week. And then the cycle starts again and again and again. If I'm counting right I've been doing this cycle 28 months = 122 weeks

I'm writing this from bed on a beautiful Saturday where everyone is outside and I'm stuck in a prison inside because I'm too sick to go out and enjoy life and know if i don't rest I won't make it through the next work week. And trust me I've tried just ignoring the disease and say fuck it I'm going to enjoy my weekend and I then would just pay an even bigger price later crashing so hard in the middle of the work week and having to use sick days. You cannot escape CFS.

I am the same, I went back to work beginning of September on a phazed return after 8 months off work due to a really bad relapse, it has been a huge struggle! Its like I am in constant PEM with odd days of, what I call normality!

I am a 1:1 TA in a primary school with children that have SEN, (Special Educational Needs). Last week my hours increased from 3 mornings till 12 to adding another 2 mornings till 10.30am.

Am now off again because I couldn't sit or stand for long. I have been crawling up the stairs and bumping down, staggering and bumping into wall to keep myself up. Today hasn't been as bad! I know that tomorrow, if I can stand and walk, albeit doddery, then off to work I will go. Like those of you that are working, I had to make a decision, if I want to work then I have to cut out all activity when not working. My hours will eventually be increased back upto full time, have no idea if this is going to be possible!

I am not sure how long I can keep forcing myself to do this and I hate not knowing what the future holds for me, regarding this illness. I used to be active and healthy with so many plans. I used to cycle min 50 miles a week and was looking forward my first cycling event. Am really struggling to adjust, this is the worset ever relapse I have ever had. In the past it has only ever been mild/moderate!

I have to say it's nice to know that your not alone, this forum has helped me loads in that respect.

 

[Aurator]

Sadly it seems to be an almost universal experience among PwME that if any road back to work is possible at all it takes years longer than either the patient or the employer is prepared for. And yet seemingly every patient, in the early days of the illness at least, has to go through the same cycle of work and collapse, repeating itself until the day their body finds out how pitifully little it can really get away with doing; only then, typically, does any real chance of recovery begin.

One day, when the world understands what ME is, it may well look back in horror at the way people with such a clearly debilitating disease were expected to carry on as if there was nothing wrong with them.

A friend of mine was diagnosed with stage 4 Hodgkin's Lymphoma a few years back, and yet, though very unwell, he was physically more capable than a significant percentage of PwME. More importantly, his extreme debility only lasted a few months. What was most significant of all was that no-one, least of all his employers or his doctors, expected him to be rolling into work each day as if there was nothing wrong with him. In the meantime he rapidly obtained the required chemotherapy treatment (one component of which he tells me was Rituximab) and now, six years later, he is still going strong, leading a more active and fulfilling life than ever.

 

[meandthecat]

One day, when the world understands what ME is, it may well look back in horror at the way people with such a clearly debilitating disease were expected to carry on as if there was nothing wrong with them.

I have forgotten what 'Normal' is but I reckon the majority of people can't comprehend continuing to work and live with the symptoms we take for granted.
I sometimes feel that I am part of some perverted experiment in how far you can push people and then watch them break.