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

[SDSue]

I'm totally petrified reading all of your posts.... because it seems for everyone that you were able to work in the beginning, some for only a short time and some for a few years, but eventually everyone lost the ability to work. I cannot lose my ability to work I have no safety net or anyone who I can fall back on.

Were any of you under CFS treatment during this time and still lost the ability to work?

No real treatment. I had been diagnosed with ME/CFS but the doctor declared me “too ill to fully treat” so he threw a bunch of his own supplements (i.e. garbage) at me. Truthfully, I didn’t quite buy that I actually had ME/CFS, so didn’t pace just kept pushing and crashing.

Coulda, woulda, shoulda.

 

[PennyIA]

I am very fortunate to be able to work full time right now. It stinks big time, but I can do it.

I'm stuck at a desk with a computer and a phone, and when I worsen, I can work from home until I can't any longer. On a regular week, I'll often work from home at least two days a week.

The mental stress is the worst of my job and it can cause a flare up. Thankfully, so far I've managed to be able to use family leave and short term disability (which pays 100% for the first three months of disability) and been able to get back to working condition again by the end of the 12 weeks.

My goal is to get my salary as high as I can and build up as much PTO options as I can until I can't any longer. Hopefully by then, if I end up on LTD (which I do have insurance for) -it'll be enough to cover my mortgage, expenses, and insurance. If I never land on LTD, all the better... but I want to basically save up as much as I can and do as well as I can while I can... to try to cover my tail if the worst comes along (and yes, dying young isn't the worst, it's being too ill to work and denied Social Security that would be worst financially for me).

When I'm at my best, I have to strictly modify my activities... its really hard for me to not do things I want to do and want to be able to do. About 50% of my time, I get up 30 minutes before I have to go to work and drop my son off at school. That gives him time to wake up and get ready. Me time to do five minutes of housework, pack a lunch, and wake up. After I get home from work, I heat up something microwavable for both of us to eat... and go lay down and stay in bed until it's time to go to sleep. I'm parenting from my bedroom which totally sucks for my youngest, but it is what it is. That's it. I want to work with grocery delivery - but it's so new and still too expensive in my area right now... so I save grocery shopping for my 'exertion' on Saturday... and otherwise, spend my weekends in bed trying to recover from the previous week.

The least little bit of stress can send me spiraling because I'm already maxed out right now. Last year it was a good stress, the project I was on was exciting and interesting, but frustrating as well.... and I ended up bedridden for about 12 weeks. The first two weeks, I was trying to work from bed...but I reached a point where even having my head at the slightest incline set off these horrible shootting pains... so even though I *could* work with a laptop from bed, I gave up.

 

[geraldt52]

I'm totally petrified reading all of your posts.... because it seems for everyone that you were able to work in the beginning, some for only a short time and some for a few years, but eventually everyone lost the ability to work. I cannot lose my ability to work I have no safety net or anyone who I can fall back on.

Were any of you under CFS treatment during this time and still lost the ability to work?

I worked full time for about 5 years before I was diagnosed, as there was no CFS diagnosis. After being diagnosed I was still able to work full time for a couple of more years, and was in what I would call a partial remission. I was under a specialist's care, but honestly, I'm not sure anything that was done was responsible for my remission, as everything was later repeated with no improvement whatsoever. Life during those years consisted almost entirely of work, and rest, as others have said. I finally became unable to work at all, and spent the next 7 years fighting Social Security to get SSDI. Everything I had done to keep working as long as possible, nearly killing myself to do it, was used by Social Security as evidence against me.

You can't know what the future holds for you, but you'd be wise to prepare for the eventuality that you may not be able to work at all...and don't place your hopes on Social Security being there for you. You may eventually be able to collect Disability, but you can't count on when that will be. My case ended up in Federal Court before they were forced to pay. Everyone thinks "I can not lose my ability to work", and then it happens, and you have to get by however you can get by.

 

[*GG*]

I'm totally petrified reading all of your posts.... because it seems for everyone that you were able to work in the beginning, some for only a short time and some for a few years, but eventually everyone lost the ability to work. I cannot lose my ability to work I have no safety net or anyone who I can fall back on.

Were any of you under CFS treatment during this time and still lost the ability to work?

You need to keep your documentation in order as much as possible, I know it's not easy. I was so tired, I would just usually pile my paperwork. You should try to find a good lawyer to send any docs that your employer/HR might send to you in regards to your illness/sick leave etc...

I was seeing a good Dr since 2008, but my employer found dirt on me, and was ready to fire me, and would have gotten there way, yeah, I screwed up some, but I hit the door in 2013. I worked ill for 10 years, wonder how many years out of my life that took? Oh well, we all have battles to fight!

I had a bad crash in 2009, was out of work for nearly 3 months, my employer had me visit their Dr for fitness for duty. I had a ME/CFIDS/SEID knowledgeable lawyer go with me to that appt! He was good, still working with him.

GG

PS I was a Scientist also

 

[SDSue]

It was aggressive because from the start we began with combinations of drug at high dosages: Valcyte + Famvir + Doxycycline + Immunovir + LDN
For sleep: gabapentin + gabitril + clonidine
Plus so many supplements I can write them all

I’m starting to see Clonidine pop up on sleep threads more. How much clonidine are you using, and are you on any other drugs, such as beta blockers, that affect HR and/or BP? thanks

Everything I had done to keep working as long as possible, nearly killing myself to do it, was used by Social Security as evidence against me.

Yup. It’s a crazy system. And once you are approved, you’d better be darn sure of your ability to go back to work and continue working successfully, or the fight renews, with your attempt at work used against you.

Reading this thread, I am reminded of what brought me to complete disability, and also that I am nowhere near going back to work even part time. I likely never will be, and that’s a hard reality to face.

 

[Sushi]

I'm totally petrified reading all of your posts.... because it seems for everyone that you were able to work in the beginning, some for only a short time and some for a few years, but eventually everyone lost the ability to work. I cannot lose my ability to work I have no safety net or anyone who I can fall back on.
Were any of you under CFS treatment during this time and still lost the ability to work?

I was not on any good ME/CFS treatments until after my last crash. However, after a more minor crash, I had intensive IV hydrogen peroxide treatments (with the thought of treating systemic candida as I didn't yet have an ME diagnosis) and this gave me 2 years of symptom-free working before I crashed in 2006. But there was no follow-up to the IV treatment and that was a problem.

Do you have private disability insurance available where you work? That has been the salvation for some here. However, you are getting very good, aggressive treatment and if you can pace a bit in your work, there is a lot of hope that you won't crash into disability. I don't think I would have had I had appropriate treatment.

Note to others on this thread--I had forgotten about that foam mattress on the floor of my office that I used during every lunch break!

Sushi

 

[L'engle]

I wasn't on any treatments during that time. If you can get to a good specialist and get good documentation you stand the best chance! Also I did not come to a forum like this, didn't even know the first thing about electrolytes. So you are way ahead of me. Good for you getting everyone's advice before it is too late.

 

[catly]

Thank you very much I appreciate it. I am a scientist and even among my more educated coworkers and colleagues I don't really talk about it other than to say I have autoimmune problems, because I do also have psoriasis since I was a teenager but it is nothing compared to my ME. Even today, in 2015, most people including clinicians and scientists don't really believe this disease exists and wouldn't understand it and I'm petrified to tell anyone for fear they will think I'm a quack. As many of you have written it is very stigmatizing.

I don't have family or people to help me if things get worse, so stopping work or going part time is not an option, if things get worse everything in my life will fall apart and I will lose everything.

I have the same concerns and I hope to keep working until retirement age.

FWIW, I have a colleague whose husband has had ME since the mid 80's. He's managed to work full time now for 30 years with this darned illness.

He is a social worker and has been a director of a long term home care agency for probably the last 15 years. He makes home visits in the AM a few days a week but otherwise works from home.

He's totally disengaged from the MECFS community- having lost hope for treatment and advocacy work a long time ago but he has managed to lead a somewhat limited but fullfilling life-- which included several vacations- usually cruises --each year.

He's also enjoyed watching his kids grow up and have their own children.

He's finally reached retirement age and is looking forward to that.

 

[christine123]

I'm working full time, and it sucks. A lot. But I'm thankful that I'm at least able to work because there are so many of you who can't.

I relapsed in Dec 2013 and at that time, I was working 2 days a week at my current job and 2 at an internship that I was commuting to in NYC, that I had to quit because I could not handle the hour and a half commute both ways and it was making me very ill. I'm doing better now than I was then, so I've been working my way up. I went up to 3 days, 4 days, and just recently I started 5 days a week.

It hasn't been easy for me. The drive is half an hour and my symptoms worsen a lot when I'm in a car. But what am I gonna do... I don't have anyone to help me, so I have to drive to work myself.

Luckily, I am in a field that I love and went to school for (graphic design). But that means a lot of looking into a computer screen, and I have a lot of visual disturbances and sensitivity to light. I get made fun of by coworkers for turning my screen brightness way down because they don't understand.

I show up late all the time because I can't get myself out of bed and moving any faster than I do. Luckily my boss is understanding and we have a casual work environment so I'm not the only one who doesn't show up at 9. We don't have dress codes so I usually just throw on any old clothes and look like a mess.

 

[leokitten]

I’m starting to see Clonidine pop up on sleep threads more. How much clonidine are you using, and are you on any other drugs, such as beta blockers, that affect HR and/or BP? thanks

My CFS didn't give me OI or POTS, I'm part of the subset that actually had their blood pressure go up and stay up after getting ill. My blood volume also was high not low and I have had a good deal of sympathetic activation (all of these measured multiple times to verify). So clonidine is applicable to PWME that are in this group. I take 0.1 mg at night. Typical dose for high blood pressure, anxiety, and all other clonidine indications is 0.1 mg BID, so I do only the night dose and it's made a difference in my symptoms.

 

[SDSue]

My CFS didn't give me OI or POTS, I'm part of the subset that actually had their blood pressure go up and stay up after getting ill. My blood volume also was high not low and I have had a good deal of sympathetic activation (all of these measured multiple times to verify). So clonidine is applicable to PWME that are in this group. I take 0.1 mg at night. Typical dose for high blood pressure, anxiety, and all other clonidine indications is 0.1 mg BID, so I do only the night dose and it's made a difference in my symptoms.

Thanks so much for the details. How does one verify sympathetic activation? Thanks

 

[leokitten]

Thanks so much for the details. How does one verify sympathetic activation? Thanks

You need to measure your norepinephrine and epinephrine levels. The best way to accomplish this is to do a 24-hr urine catecholamines and 24-hr urine metanephrines. Doing a random urine or blood test is less likely to pick up the mild/moderate sympathetic activation that people with CFS get.

I've done both 2-3 times and each time my NE and E levels (and metabolites) where above the normal range, not a huge amount over but enough to be abnormal.

 

[SDSue]

Thanks @leokitten. Looks like I’ll be toting the big orange jugs again lol.

 

[Sushi]

Looks like I’ll be toting the big orange jugs again lol.

We are a very select social bunch who don't need an explanation for what those "big orange jugs" are!

 

[leokitten]

What's even worse is that for the catcecholamines test you need to use orange jugs with HCL preservative, so everytime you open them you get a lovely smell

 

[Sidereal]

Note to others on this thread--I had forgotten about that foam mattress on the floor of my office that I used during every lunch break!

Ah yes, those were the days. I used to keep a yoga mat in my office and would lock the door, turn off the lights and lie down on the floor during every lunch break. I couldn't eat lunch anyway due to histamine reactions to food. My work productivity went down to near zero. As soon as I got home I would lie down on the couch or bed and not move until the next morning. Often I didn't have the energy to even change out of work clothes or make dinner. I seriously considered shaving my head because I didn't have the energy to wash my hair and use the hairdryer more than a couple of times a week.

In some ways, those months/years leading up to the ultimate severe crash were more frightening than what I'm dealing with now because I could feel myself slipping away from normal life / human society and I knew I was losing my ability to earn a living. I remember thinking every morning as I was struggling to take a shower if this would be the day I can finally no longer put one foot in front of the other. The uncertainty was awful.

At least now I've made a bit of peace with having lost everything but in that intermediate period when you don't know what the hell is wrong with you and you're constantly having to act normal, keep up a charade, go out every day, collapse in public etc., in a lot of ways that stuff was more terrifying than being housebound now and unable to even pretend to be able to do those things.

 

[leokitten]

Especially because when you can work and struggle so much trying to appear normal then when I have a flare up/crash/symptoms people have even more trouble understanding that there is something very serious wrong with my body. I hate it because there are many physical changes that have happened to my body from CFS in just 2 years but they're not easily noticeable to people that aren't very observant.

 

[heapsreal]

I would say working full time or close to it make it almost impossible to pace yourself. Life can be just a constant push crash cycle. Even if ok on days off your always thinking i need to conserve to get through the working week.

 

[Mel9]

Especially because when you can work and struggle so much trying to appear normal then when I have a flare up/crash/ symptoms people have even more trouble understanding that there is something very serious wrong with my body. I hate it because there are many physical changes that have happened to my body from CFS just in 2 years but it's not easily noticeable to a person who not really observant.

Yes, the 'trying to appear normal' is very hard. It is a real struggle at present.

 

[SDSue]

Ah yes, those were the days. I used to keep a yoga mat in my office and would lock the door, turn off the lights and lie down on the floor during every lunch break. I couldn't eat lunch anyway due to histamine reactions to food. My work productivity went down to near zero. As soon as I got home I would lie down on the couch or bed and not move until the next morning. Often I didn't have the energy to even change out of work clothes or make dinner. I seriously considered shaving my head because I didn't have the energy to wash my hair and use the hairdryer more than a couple of times a week.

In some ways, those months/years leading up to the ultimate severe crash were more frightening than what I'm dealing with now because I could feel myself slipping away from normal life / human society and I knew I was losing my ability to earn a living. I remember thinking every morning as I was struggling to take a shower if this would be the day I can finally no longer put one foot in front of the other. The uncertainty was awful.

At least now I've made a bit of peace with having lost everything but in that intermediate period when you don't know what the hell is wrong with you and you're constantly having to act normal, keep up a charade, go out every day, collapse in public etc., in a lot of ways that stuff was more terrifying than being housebound now and unable to even pretend to be able to do those things.

You are telling my story. It’s funny how we forget how bad it was, until we are reminded.

Having my body and mind fail was terrifying. The progression from moderate to severe was rapid and nobody could tell me why. Everyone around me, from family and doctors to co-workers and friends just assumed I was “losing it” in spite of my longstanding history of unbridled hard work, joy, contentment, and non-stop activity.

it’s interesting to me that you feared “the day I can finally no longer put one foot in front of the other”. That’s exactly how it happened. 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’m sorry that you traveled thru Hell, too.