Can You Work?

[Horizon]

I too really enjoyed my line of work and my whole previous life. I am unable to work although caring for myself now seems like a full time job with overtime

 

[ahimsa]

I started working in 1982 (not counting programming jobs in college) as a software engineer. I loved my job. I held on to it as long as I could. I still miss it.

My initial onset was in 1990. Between 1990 and 2000 I went on medical leave (short term disability) and came back to work many times. I would rest for a few months, recover a bit, think I was well enough to work, and try again.

Talk about your faulty illness beliefs! For many years I truly believed that, eventually, I would fully recover. Then later I thought, well, maybe I won't fully recover. Maybe I won't ever go back to lifting weights and hiking and such, but a desk job? I was 100% sure that such a sedentary job would always be possible. I kept pushing myself over and over again.

My final attempt at returning to work I could not even handle a few hours a week. I had had surgery for endometriosis a few weeks before returning to work. But somehow it took way too long for me to recover from that surgery. I just could not do it.

I suspect that many (most?) folks with ME/CFS who are able to work, especially if they are trying to work full time, are either not on this forum or don't visit here very often. When you have barely enough energy to hang on to your job you don't have much extra energy for going online.

At least, that was true for me. I did not go online much when I was still working. Pretty much all I did was work, eat and rest/sleep. If my husband had not done most of the chores on top of his own full-time job - laundry, groceries, meals (mostly take-out), etc. - then I would not have been able to keep working even at my very flexible desk job (could arrange my own schedule, pretty much, as long as I made it to meetings).

I really feel for those who are single, get sick (with this or any other illness), and have no help at home.

PS. I just remembered that I know a statistic about how many patients are working. One study found that 13.5% of ME/CFS patients can work (either part time or full time). See http://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/

For comparison, 45% of MS patients are working (either part time or full time). See http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0103317

 

[Cork]

I thought I would chime in as someone who does work full time at a desk job. I was recently diagnosed and I am still learning about ME but it seems like I have a lesser case than others here. I struggle to make it through a 40 hour work week and I find I need to mostly rest after work and on the weekends. There is no way I would be able to work a more physically demanding job. Now that I know what is going on with me, I have considered working less like maybe 30 hours so I can have more "good" free time and a better social life.

To the point above, I think you are right. People who are working probably don't have enough energy to reply on a forum. (I'm getting very tired just writing this.) Either that or they are undiagnosed. There's probably a lot more working ME people out there who don't know what is going on or their doctor told them they had depression.

 

[Clerner]

I have been unable to work since June 2015. I am/was a speech/language pathologist working in the schools. I barely made it thru my 2014-2015 year after dx with ebv. I was docked pay several times for exceeding my time off. I have never not worked my entire life!

Waiting to hear from disability. So nervous I will be denied. The stress and mental capacity needed for my job is overwhelming and I know going back to work will set me back. I am so depressed and feel like I will be denied. I guess I will try to appeal, but I just don't know.

I hate not working and I mostly loved my job working with kids.

 

[daisybell]

@Clerner I'm a speech language therapist too! Currently trying to work about six hours a week, in a role that is slightly different. Suffering for the past two days having done 3 hours work in one day..... I find the concentration required a big issue... Lots of cognitive payback when I overdo it. I don't qualify for any benefits but had to stop work in 2013.

 

[Snow Leopard]

No.

 

[Clerner]

I'm a speech language therapist too!

Yeah! Another slp! I also have cognitive issues and I am so worried about having to do large meetings and write reports!
What capacity are you working for 6 hrs a week?
I am thinking of doing 2-3 days a week at a private clinic but I am so scared about stress and memory problems.
How old are you? What was the triggering factor for your cfs? Fibro?

 

[Clerner]

I don't qualify for any benefits but had to stop work in 2013.

Right, no benefits part time.
This is the first year ever that I have not worked ever in my life! I feel so guilty and depressed. The trigger was ebv reactivation in August 2014 after moving to Florida and getting a new job. I stayed pretty sick but then got really bad in Sept 2015. Found out high titers for parvo, 4 strains of Coxsackie A, 4 strains coxsackievirus B, chlamydia pneumoniae, y.enterocolitica, mycoplasma p., chlamydia trachomatis. I'm the poster child for cfs/fibro. Lots of pain/ inflammation.
I still have high ebv early antigen diffuse and early antigen as of this March--1 year, 7 mo later.
This has been the MOST devastating thing I have ever experienced.
Tell me about you situation.......

 

[daisybell]

@Clerner
I'm sure that parvovirus was my trigger - back in 2007. Never been the same since, and gradually deteriorated over the next few years. Cut back hours at work and struggled on until I just couldn't do it anymore. I'm now a casual employee and do just a few hours. I couldn't do the six hours all in one go.
I write everything down now - which is fine as long as I'm not too tired, when my spelling is awful!

 

[OkRadLakPok]

Wow. I do not feel so bad now. Thank you guys for sharing this. I got sick at 14 and never worked and feel very bad. However, I did a lot in it place. I tutored in languages and I also started a project with my brother. He does something in his job where I can go in whenever I can. And he says that I really make a difference there. And I can tell he is not just saying it! So I can do that when I can.

So thank you guys a lot for sharing your stories. I wish I had been able to work but I do as much good as I can wheverver i am or however that saying goes which is attributed to Weseley but he never really said that.

 

[Clerner]

I'm now a casual employee and do just a few hours. I couldn't do the six hours all in one go.

Well, I just got denied for disability. Very upsetting. We are running out of money so I am going to be forced to work part time.

 

[daisybell]

Well, I just got denied for disability. Very upsetting. We are running out of money so I am going to be forced to work part time.

I am sorry. That sucks.

 

[rose1]

Well, I turn up to work - don't do much whilst I'm here, but try to do enough to fly under the radar. Desperate to reduce my hours but my job is just being changed from contract to permanent, so I don't want to rock the boat and risk missing out on a permanent offer. Still hoping that I'll be one of the lucky ones who can get over this illness. Seeing an immunologist in a few weeks, hopefully he'll find some virus lurking somewhere which just needs a magic pill to cure it!

 

[taniaaust1]

This poll is just a prime example of the severity of the disease. The inability to provide for ones-self and ones family.

Makes me sad to see that this is the sad truth of this disease that affects millions world wide.

Wishing for hope and better days to come.

its so shocking that we poll this badly, this is the TRUTH of our situation and really what is going on, yet this illness still gets ignored by most. Its unbelievable!

 

[taniaaust1]

Waiting to hear from disability. So nervous I will be denied. The stress and mental capacity needed for my job is overwhelming and I know going back to work will set me back. I am so depressed and feel like I will be denied. I guess I will try to appeal, but I just don't know.

You probably will be knocked back the first time, most are.. just be prepared for that to happen and to appeal this.

 

[taniaaust1]

I really enjoyed working whether it was gardening for others, doing carer work for others or even mucking out stables I enjoyed (doing a hard honest days work was a refreshing thing to do one could say. I used to love to do a variety of different jobs. It does suck not being able to work.

Even now after not being able to work at all for a few years or so.. my brain is still trying to think up things I could do.

 

[Tunguska]

I work from home, on eternal probation for basic pay. It's the principal reason I'm still here, because I've never seen a cent of public funds and could do nothing physical daily. Every effort goes to supporting the grey matter. This work's unusual so I don't know how the hell others survive, except what's written here.

 

[JohnSilver]

Thank God I have a desk job in Information technology. I manage to drag myself to work and sit at a desk all day. If I had a job where I had to walk around or do physical activity, I would be wiped out.

 

[rose1]

I too have a desk job and have been dragging myself to work all this year. My new GP recently noticed that my blood pressure was elevated and had me monitor it six times a day for 5 days which showed consistent elevation. Since being on a blood pressure med I have had a reduction in some of my symptoms - less tired during the day, less brain fog, less lightheadedness and wobbly legs, I even feel more optimistic!
Sometimes it is good to have a new GP look at the variety of symptoms (I didn't say anything about my previous doctor suggesting chronic fatigue syndrome).
Although I am managing better at work I still struggle with some things at home, just preparing a meal last night brought back the lightheadedness and wobbly legs. I'm just glad I'm getting periods now where I feel more 'normal'.

 

[valentinelynx]

I work but I have no idea how. When not working, I am most of the time in bed. I work up to 4 days in a row. Sometimes I do that for a few weeks in a row. Other times there are weeks between my work days. I work filling in for other doctors when they are on break.

When I work, I act "normal." After I leave work, I collapse. I go back to my hotel (usually work out of town) and go to bed for however much time is left before I have to eat dinner, then go to bed. I hardly sleep when I'm working because of my sleep reversal - just naps.

My Tibetan medicine doctor wondered how I manage to work at all. Then she said, "you must just run on adrenaline." That seems to be about right.

I really enjoy working. Probably it is killing me physically, but maintaining me mentally and paying for the medical care (and food and housing...).

I dream of a job where I can work 2-3 days out of a week, regularly. In fact, I had one, until my workplace decided they didn't want part-timers anymore. I pray to find such again.

Maybe it sounds arrogant, but I don't think most "normal" people would even consider getting up to go to work if they felt like I do everyday. They'd call in sick with the "flu." But I am incredibly stubborn. Not necessarily to my benefit.