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

[leokitten]

I've been meaning to write this post for a while, I don't really see any posts on PR about people who have ME/CFS and are still working full time. I wanted to share my life experience and hear about yours. I think we struggle with different problems that others and I want to talk about them.

I have ME/CFS for over 2 years now and have been fortunate enough that I can still work full time. The first 1.5 years I had many times where I was so sick that I thought I was going to lose my job, but because I started aggressive treatment early over time it has helped to stabilize my disease.

I still spend all of my time outside of work resting and have almost no social life outside of work. Before I got ME/CFS I had a big social life with lots of friends and activities but that is now a distant memory. I also still crash severely from time to time because it's very difficult with ME/CFS to have a full time job and keep within my energy/exertion envelope.

Please tell me how your life is, how you manage, how your ME/CFS has been, etc. and ask me any questions you might have...

 

[Denise]

@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.

 

[*GG*]

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.

Yeah, I didn't talk about my illness much at work, which probably hurt my work relationships. If people knew you had cancer, per se, you would get more understanding. But this illness has been buried, and so poorly recognized, that its hard to try educate people, energy is at a premium!

GG

 

[*GG*]

I have ME/CFS for over 2 years now and have been fortunate enough that I can still work full time. The first 1.5 years I had many times where I was so sick that I thought I was going to have to quit my job, but because I started aggressive treatment early over time it has helped to stabilize my disease.

Please tell me how your life is, how you manage, how your ME/CFS has been, etc. and ask me any questions you might have...

How long did it take you to get diagnosed? It took me over 2 years to get diagnosed. Then I had to figure out the system on my own, on how to help hold onto my job. With FMLA in the USA, I decided to work 2 days, take 1 day off for rest, then work another 2 days.

I was going to the Drs for my IBS, sore throat, and pain! Before being diagnosed, to rule out other illnesses. My PCP sent me to specialist, had an HMO to start, but that was not good with a chronic illness, and she told me that it could take 2 years for my immune system to bounce back from Mononucleosis.

Before getting diagnosed, I was often calling out sick, especially as the week went on. This would rub my co-workers the wrong way. Calling in sick on a Friday, they think you just want a 3 day weekend!

GG

PS What aggressive treatment are you referring to?

 

[Sushi]

I still spend all of my time outside of work resting and have almost no social life outside of work.

I am posting from memory as I worked full time with ME/CFS for many years, and yes, that is about what life amounted to--work and rest. For years I wasn't sure what was wrong, I just knew that I was sick a lot, took a lot of sick days and could never keep up with others.

After I got a diagnosis (which took many, many years (during which time I wasn't getting any treatment), I learned that pacing was a necessary approach, if not fun. Had I had good, early treatment, I might not have fallen into a level of disability which prevents me from working except a few hours a day at home.

Sushi

 

[Seven7]

Hell.

 

[catly]

6 months after my initial onset of ME/CFS in Feb 2012 I stabilized and spent the next 6 months fully functional and able to exercise--then I crashed bad and ended up on full time disability from work for many months. I slowly got a little better and my employer allowed me to work part time from home. From there I slowly increased my time working to full time and started going into the office a couple of days a week for a few hours. Now, 2 years later, I'm still working full time, mostly from home. Overall, I'm feeling better and can function better but I'm still not able to go into the office for more than 4-5 hours a day twice a week. Those are my worse days of the week and while my physical endurance seems to slowly be getting better--my overall stamina when I go into work vs. WFH is stuck at a pretty low level.

I should add that I'm under the care of an MECFS specialist since 2013 and have been on antiviral treatments, LDN and probably the biggest positive treatment is Ambien for sleep. If I didn't have to work I think I would be doing much better--but, I really don't have a choice financially since I have no one else to help support me.

 

[L'engle]

My mental stamina got bad more quickly than my physical stamina so I was never able to work full time. The couple of times I did it lasted only a few months, was very difficult and resulted in me getting worse. Also I found it difficult working around cognitive dysfunction while being just well enough to get to work. I made mistakes and it was bad for my self esteem. I felt sick all the time and just got worse by the week until I had to leave, got laid off, or work term ended. Since being ill I've only ever been able to succeed at tasks that were work at home and self paced.

 

[SDSue]

Hell.

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.

 

[Seven7]

@SDSue I drive with a pillow in the side so my arms can make the trip. I keep a pillow, blanket and earplugs and a blackout mask in the car so I sleep all the lunch break.
I work from home all I can and I have a recliner at my office.

STILL HELL. by the time I put some decent clothes (and the compression crap I put on) get the food packed and get to work, I am dead tired. And I have to use my brain all morning before I can lay down again.

Is pure torture. Thank God I love what I do. If not I really do not know how people do it unless you are deeply and irrevocably in love with what you do.

 

[*GG*]

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.

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

This reminds me of the time when I was working, I got a close parking space to the building I worked in. My designated area to rest was a Library, so of course people would come in and use the phone and/or look for resources, it was also under construction at one point and time, and of course they did not think of me, and where would I go to get some rest?!. So when I really needed rest, and the temp were mild outside, I would rest in my car.

I actually used to go into a building that was barely used, go into a single person bathroom that had a chair in it, and would rest there. The things I would do to try to get my rest!!

My supervisor said to me he heard I was sleeping in my car, on my break or lunch break. I said something like I wasn't sleeping, I was just closing my eyes! We were not paid for our 30 mins for lunch, so what is it to them?! They were assholes, don't miss working there, been nearly 2 years now!

GG

 

[SDSue]

@lnester7 @ggingues
Your posts made me sad. It’s all so familiar. I’d forgotten about propping up my arms to drive and resting in empty rooms. It’s no wonder symptom questionnaires / checklists / summaries can’t possibly convey the depths of this disease. PWME have made so many huge and tiny adjustments in our lives that we don’t even think about many of them anymore.

I’m just sorry you are having to live like this, @lnester7, but sure am glad you like your job. (and I’m super curious about what you do lol)

 

[*GG*]

Yeah, I hope to sue my former employer, would love to get a lawyer to do discovery on there ass, sure there is lots of ammo, but who is going to take my case?

I actually had a person put a "middle finger" on the scheduled day off for me, a Wednesday. I heard that the person who did that was not even punished! He was connected at work, perhaps I could sue him for violating my Civil Rights, he has moved up the ladder, would like to hit him where it counts!

Seems like I was the only person punished form my screw ups! Imagine working in an environment like that, energy is already hard to muster up, but then you need to work and deal with all that bullshit!

GG

 

[SDSue]

Yeah, I hope to sue my former employer, would love to get a lawyer to do discovery on there ass, sure there is lots of ammo, but who is going to take my case?

I actually had a person put a "middle finger" on the scheduled day off for me, a Wednesday. I heard that the person who did that was not even punished! He was connected at work, perhaps I could sue him for violating my Civil Rights, he has moved up the ladder, would like to hit him where it counts!

Seems like I was the only person punished form my screw ups! Imagine working in an environment like that, energy is already hard to muster up, but then you need to work and deal with all that bullshit!

GG

Wow. As hard as it is, and then abuse on top of it. I hope an ME patient does sue successfully some day soon.

 

[taniaaust1]

I worked for 6 weeks full time.. I was actually doing up to about 57 hrs per week. This was cause I got a job where I paid to sleep some where! (I was looking after a quadriplegic guy and this nightshift job involved turning the TV off with a remote when he went to sleep and on rare occasions if I was doing overnight shift, to get him one drink. Oh and give him his bong for pain relief before bed, that's why he wasn't in a care home as it was the only thing which helped his severe pain and that's illegal).

This job would of been great for me had that guy not been a horrific insulting asshole who was just full of bitterness (he was a quadriplegic due to drunk driving). He liked to get reactions out of people, even told me one time that he was going to get his puppies killed as they whimpered and pissed him off so had me in tears (the puppies were only 4-5 weeks old). So it was actually emotionally distressing working for this guy though physically needing to do basically nothing except sleep there, this would of otherwise been an ideal job.
................

Other then that job, at another point I was working 15-20 hrs per week with ME/CFS, when I first came back down with this illness. Big mistake, by doing that I got worst and below long could only work 9hrs and then 5hrs.

I was made to keep working in a declining state or centrelink said they would cut me completely off of payments, during this time I was fighting to get onto disability but kept being knocked back so going through several appeals (my case finally got approved by Canberrra, my state, is too discrimintory towards ME/CFS. The assessor interstate was horrified I hadn't been put onto disability immediately, I couldn't even remain seated at appointments was so ill).

I smashed up 2 cars being forced to drive to work too tired as Centrelink said they wouldn't accept sickness certificates from my doctors an said they'd cut me off. (I'd love to sue them for the money they costed me with the smashed up cars due to being forced to drive due to their threats and rejections of my sickness certificates while too sick. They could of killed me.

While doing part time work, my own disabled and elderly clients were so horrified that I was having to help them (I'd be staggering at work and screwing everything up eg I'd clean somewhere and then forget where I'd already cleaned so would do things over and over) that one of them even wrote to social security saying I shouldn't be working at all.. They felt sorry for me visually ill (sometimes shaking with the effort, or seeing me fall) that sometimes they'd sent me home early leaving their own house not properly done or try to do it themselves while I was laying on their lounges.

My clients, most of them were real lovely and I loved my job, it was so sad for me to be letting them down. I still think of many of them often.

The agency who employed me (I was a private contractor for them so self employed and albe to choose my own hours but worked for them) was excellent too, several times I rang them crying my eyes out due to getting very lost trying to get to clients houses due to my brain no longer being able to follow a map and they always told me to take how much time off I needed.

Irronically everyone at work being so nice to me actually made me more stressful as I knew I was letting all these nice people down and just couldn't do it and shouldn't have been working at all by this point). Years later, my health hasn't recovered from this, it really wrecked my baseline which then ended up putting me at risk of it further crashing which it did.

I'd be surviving okay now if I hadn't been made to work when ill when I was still capable of 6-15hrs per week but now instead, now I need care.

 

[leokitten]

@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 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.

 

[leokitten]

How long did it take you to get diagnosed? It took me over 2 years to get diagnosed. Then I had to figure out the system on my own, on how to help hold onto my job. With FMLA in the USA, I decided to work 2 days, take 1 day off for rest, then work another 2 days.

I got diagnosed after 8 months. It was the worst 8 months of my life, I had no idea what was happening to me while having to work full time and perform at work, hiding my illness, going from doctor to doctor, having all the ME/CFS symptoms hitting me like a freight train my body felt like I aged 50 years in one day and that I was dying. I refused to give up until I got answers that's why it only took me 8 months, I went to almost every type of specialist there was and did every kind of lab test, procedure, etc which ruled many things out. From all the labs and procedures that were done the only things that were strange were that I was having heart PVCs (which I felt from the moment I got ill) and my EBV titers were very high. Around 7 months in when every regular doctor couldn't give me answers I started researching on my own and realized that this must be ME/CFS. I then found Dr. Levine and she did a much more thorough set of lab tests which showed even more abnormalities and then we started aggressive treatment.

In US here they lump your sick leave and vacation together (called personal leave) so if you are too sick then you have nothing left for vacation (which is totally draconian IMHO). The past 2 years I was able to get by using all my personal leave for sick days when I crashed or for doctors visits and even borrow some days. Because of this I haven't had any vacation or real time to rest since I got ME/CFS. II did finally get an FMLA a few months ago though I haven't used it at all yet because fortunately things these last few months I've been able to manage.

PS What aggressive treatment are you referring to?

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

 

[leokitten]

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?

 

[taniaaust1]

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 I wasn't on any CFS treatment at all.

Is there any kind of illness incapacity insurance you could take out in case you loose your ability to work?

I think its something like 50% with this cant work.
...........

I forgot to add in my post before that like others here, I had a mattress in car so I could sleep a times. I brought a panel van esp so I could do that as sometimes after work, I couldn't just drive home and would need to be laying for a while first.. We go to great lengths to work.

 

[ukxmrv]

I was in and out of work for the first 20 years. Always under ME treatment of some sort. for the last 10 years I have been completely unable to work. Probably had the best "treatments" in that time but they are not enough to take me back up to the working level.

If I had been able to complete my education and in a satisfying and supportive career / job it may have been a different story. I was too young.

What I did have was enough experience in my part time work that I had done as a university student, to get "jobs". They were often under contract, paid no sick leave or any leave, in the evening or afternoon, sometimes part time and there was no career development at all.

In the end it was a road traffic accident that put an end to my working life but by then my recurrent severe flu episodes and sinus infections meant that it was getting harder and harder to find and keep work.

One of the disappointing things about my succession of jobs was that they became increasingly more poorly paid over time, I couldn't retrain or upskill and I had to spend a lot of the money I earned on transport, a flat close to work and over time this became more and more expensive. My life was work, crashing at home and no social life.

My money was spent on ME treatments. I saved money for when I was unable to work. No permanent home, no assets.