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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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Do you work / have career?

Discussion in 'General ME/CFS Discussion' started by RedLineBoy, Jul 26, 2013.

  1. RedLineBoy

    RedLineBoy

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    What type of background in terms of career do you come from? Are you still working? How do you cope with the illness and desire to do good in life?

    I apologized if I may sound like a beginner. I've been truly struggling with this (cfs) illness for a while and til this date I still question myself.

    Thank you
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My career background was in a "doing good" career, but I can't manage the type of work I was doing or the level of same level energy expenditure any more. I have not worked since 2005.

    But I have been able to "translate" my career aspirations into other modes--just at a much less "productive" level. Attempting to be responsive to others with what I have learned about this illness (on this forum), is one way many of us manage to feel useful.

    I also do some work online.

    Others have been able to continue working--I did for many years when my level of disability was less. But I pushed too hard and had a big crash which threw me out of the job market. My level of functioning has improved a good deal with treatment, but not to the level where I could take a full time job.

    Best wishes, we do understand.

    Sushi
    Firestormm, Lou, SOC and 3 others like this.
  3. Valentijn

    Valentijn Activity Level: 3

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    I was in Dutch classes after moving to he Netherlands, and had started volunteering one day per week (4 hours) around the time that I came down with ME/CFS. I then flunked the class due to too much cognitive dysfunction on the spoken test (though I passed the much harder written test!). By then I knew I was too sick to handle going to class four days per week, and it was something of a relief to not have to decide whether or not to go onto the next level of (free) classes.

    I kept working for the full 6 month volunteer stint - it was a much shorter bus ride with much less walking. But eventually I was crashing afterward all the time, and had a couple occasions where my OI problems got pretty bad even while still at the office (the manager would have to tell me rather forcefully to sit down NOW, and once drove me home as well). When the 6 months was up, they wanted to keep me on (and I really wanted to stay on - great people, and a cause I really believe in). But I knew I was struggling badly already, and things were just getting worse.

    I know some people don't have a choice, but pacing needs to be a priority whenever possible. If it makes you crash, or hurt, or unable to think straight, then you shouldn't be doing it.
  4. Firestormm

    Firestormm Senior Member

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    How about yourself? Are you still managing to work? It can be a hard struggle. I think many of us who were working in a career and then hit the brick wall, tried to keep going for as long as we could - evenings and weekends became times for crashing. Social lives became nonexistent. We will have tried downscaling our roles. Reducing hours. Others might have hit the wall harder and found their time-off work led eventually to unemployment; and for still others downscaling might have led to a more manageable co-existence. It's a mixed picture I suspect: although I have experienced all forms of this.

    Originally my career was in finance and private banking - yes sorry I was one of those bastards :p You can blame me - I am sure many do :D Whilst investment management was my main role - losing private clients money - I was also often involved in project management: various things. One such project was dumped on me as I was trying to manage a return to work after I think about a year's convalescence following the initial viral infection but after my diagnosis of ME. I had 9 months in marketing to launch one of the largest mergers in UK history. Kind of made myself sick completing that one: but I was convinced I could beat it in those days through sheer effort and anyway I had a fiance back then and we were hoping to get back to our island home and marry - lot of pressure but I thought I could handle it.

    After the banking and finance - and a rather surprising disability pension - I figured I'd try my hand at education again. So hit college and then university. Don't knock being older and going to university - it was great in the main. A real break from my career and studying ancient history - a hobby until then - was fun. But I figured I was managing my remission and would jump straight back into the bank - who had held the door ajar for me. Of course I was wrong.

    After that it was a case of needing to work but not really being up to it. More kidding myself and my employer. This time it was night-shifts at a supermarket. That proved too physical and too fast - they expected a lot more than I could deliver.

    Next was a special needs school. Office assistant. I could do that - I thought. That was harder still. Funny really, going from managing millions to not being able to accurately count out the dinner money and balance a basic ledger. It was the same at University. My cognitive issues have a lot to answer for. Anyway, I was barely hanging on to my job at the school when a nasty virus hit the children, then the teachers, then the office. School closed as did others in the town. Needless to say, I was knocked down hard and couldn't get back. Lost my job at the probationary review.

    Still lessons learned I think. I wasn't very honest with the school at the interview although I did declare my disability - but remember also claiming that I was 'managing it well'. Go figure. I was in denial and found it hard to accept something that was ever hard to quantify or plan for.

    Since then and a long period I suppose of getting my head in order as well as my life; I now volunteer for a local charity and help now with PR. I am also about to help out with a national charity and that might involve some sort of self-employment; but it's all work I can do at home and fit in with my lifestyle. As Valentijn mentioned above - it was the travelling - especially the walking to and from work - that added to the problems previously: working from home with the internet/phone has a lot of benefits for folk in our position I would say.

    And it can still be social too although nothing will replace the kind of social life and pleasure I gained from working full-time in my previous life. But I no longer look back with tears in my eyes and those days are not a feature of my dreams or nightmares. I think I have moved on - but there is still a yearning for what was - especially at a personal level.
    aimossy, Madison, Sean and 7 others like this.
  5. vamah

    vamah Senior Member

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    I never had a career, just a lot of part time jobs along with raising my kids. When my youngest started kindergarten, I was offered a full time job that seemed too good an opportunity (financially and logistically) to pass up. Long story short: it was a terrible situation that tore me down emotionally and is what triggered my illness. I left that job after 2 years for a part time job that I like much better, but my health made it so I was continually cutting back my hours until I made the decision that I would never get better unless I stopped working and concentrated on my health for a while. I have 2 more weeks at my job, then will take a break. I plan to go back to work after a while, but honestly don't know that I ever see myself working more than part time.
    Madison, Misfit Toy and Firestormm like this.
  6. SOC

    SOC Moderator and Senior Member

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    My field is engineering -- research and teaching. I don't have the cognitive stamina to do that now, although I'm getting closer. However, I've also been out of the workforce too long to go back, especially at my age and in the current economic situation.

    Nowadays I teach math and science to homeschooled kids. It keeps me connected to the world and gives me some personal satisfaction. I've been able to increase my workload from a few hours a week at home to 20 hours a week away from home as my health has improved.
    aimossy, taniaaust1, Sean and 6 others like this.
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    This has not gone unnoticed Sushi, thanks for your frequent responses!

    GG
    aimossy, WillowJ, Sean and 1 other person like this.
  8. RedLineBoy

    RedLineBoy

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    I work as a general manager for fast food restaurant. I believe i'm putting in close to 50 to 60 hours a week. I do not get fatigue / tired when I'm working or standing it is only when I'm home or not doing anything. However, I always have drowsy, light headed feeling along with cognitive issue.

    Major cognitive issue that I can describe is type of feeling that you get when you have sever headaches while feeling blank. My concentration level just stinks. I do not consider my self smart at all after CFS, before I was sharp.

    I am looking a way out of my current career because i know I can't keep working in restaurant business as it is demanding.

    I was looking into health care but I feel my cognitive issues would hold me back. My short term memory is gone but long term memory is gold.

    What other career should I consider. Not working is not an option because I have a family to support.

    Thank you
    aimossy and Antares in NYC like this.
  9. Tally

    Tally Senior Member

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    I was just about to get my Masters degree and start looking for my first job ever when I got ME. Right now I can't even take care of myself or leave the apartment. I can't even dream about working.
  10. JT1024

    JT1024 Senior Member

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    I am still working full-time but it is a huge struggle. My first diagnosis was fibromyalgia and while I had to give up all my sports (skiing, tennis, aerobics, hiking, biking).. I still could cope for the most part.

    My undergraduate education was in Medical Technology (Clinical Laboratory Science). As soon as I worked in a hospital lab, I knew I didn't want to do that the rest of my life so I went back to school for Computer Science. Back then, there was programming... period. We're talking mainframes and terminals. Programming wasn't holding my interest so I started taking business courses... accounting/finance/marketing. Eventually I completed my MBA but I was still working in a lab and hated it. Finally left the lab to work for a healthcare software vendor in sales and application development. I loved what I did but I traveled a lot. When you love what you do, I find it energizing and it doesn't seem like work at all.

    A disastrous marriage and returning to a clinical lab after finding out my husband had taken huge amounts of money, as well as credit cards and loans in my name and defaulted on them resulted in increasing disability. I had to work to keep a roof over my head. The workplace was horrifically abusive... probably close to the worst I've seen and I was forced to work 3rd shift for two and a half years. I couldn't quit - I'm on my own. My health was poor and my dog's health was also declining. I worked, I took care of my dog, I crashed. My dog passed away October 30th and I'm not physically capable of handling another dog right now.

    Long story short... I'm trying to simplify my life as much as possible to 1) regain health as much as possible, 2) make huge changes to my budget to reduce my debt load and financial burdens so I can once again have any semblance of a normal life. Given my declining health, I have little capability or opportunity to do things I love (sports/travel/visit friends) because I have to do basic life things... laundry, groceries, cleaning as I'm able.

    In retrospect, I feel I should have gotten off the "gerbil wheel" a long time ago. I've spend way too much time "doing" stuff that was not important. This hits very close to home for me since I lost my brother 5 weeks ago.

    He worked very hard his whole life, loved his family and had to limit interactions with other family members because he had his own chronic health issues. He worked until he no longer had the energy to walk from his SUV to his job. We celebrated his youngest son's college graduation and he was in the hospital then next day. After months of looking for/suspecting other things, he was diagnosed with stage 4 colorectal cancer and died less than 3 weeks later. I've let too many of my own health issues go and it is scary.

    @RedLinBoy.... Healthcare isn't pretty at all. While you've worked in as a general manager in a fast food restaurant, consider the fact that many jobs in healthcare are physically and cognitively challenging as well. Hospitals, physicians offices, clinics, are being paid less by insurance companies and Medicare. The result has been declining staffing. You're story makes me think of the TV series Undercover Boss. I've seen some incredible cases where great employees were given opportunities/compensation when the "Boss" learned the hardships the employees were dealing with and how company policies or management's lack of communication/accountability impacted their lives.

    Wish we could all find work we loved and were passionate about while we begin to recover our health. Unfortunately, comments from a research scientist and people I know in healthcare suspect it isn't going to happen anytime soon.
    While research seems to be progressing on some fronts, far too few of us can afford the care we need.
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Wow JT1024, so sorry for all you have been through. Would bankruptcy or something similar be an option? Mine was finalized at the beginning of this year, hopefully I can rebuild my credit in not to long a time?! My car is a 2000, I drive 100 miles a day for work, currently 5 days a week, might be shortened to 4 days/week, still part-time though. This will hlep my car last longer and also save me a few bucks on gas every week.

    GG
    Firestormm likes this.
  12. redrachel76

    redrachel76 Senior Member

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    I never worked.
    It's in my signiture.
    I got ill at 15 and only took 2 weeks off school. The relapsing remitting nature of Mononucleosis confused me. Then the light/moderate M.E that came afterwards confused even more. It became worse.
    No doctor told me to stop school and rest. I would ask each several times and when pressed they would say "return but don't overdo it" as if this illness together with GCSE's and A-levels is a joke.

    The fact that I got it as a child before the internet age means you have to do what every adult around you says - both parents and several doctors. That is big disadvantage.

    If you really have this, and not something misdiagnosed, then I strongly urge you to rest, look after your health and not end up like me. Try whatever your budget allows to improve health. Embrace the "sick" mentality Wessley and doctors hate. I notice type B personalitys and healthy whiners never get this as severely as I did because I was a stupid hard worker and stupidly wanted a career and social life.
    It's never a mistake to rest with this illness.
    I can't suggest a job.
    overtrain, beaker, Sean and 4 others like this.
  13. Firestormm

    Firestormm Senior Member

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    There is a saying - but I'm blowed if I can remember it now - that is apt. Something about bankruptcy being the poor man's great leveller. It means that it's the only thing left that allows us a chance to level the playing field and reset things.

    I too had to take this option after many years - too long - thinking things would get better and I could emerge the great conqueror. I was keeping up with the payments - just about; but things began getting away from me when I lost the job at the special needs school.

    In one sense I wish I had taken this option before going to college and Uni because when I exited I would have been 5 years down the road. As it is, well I can't say it was an easy ride; but the relief is immense: as is the guilt. I think 10 years had passed since I left the Bank with a pension before making that decision; and in that time I had incurred c.£2500 debt each year. So I am talking about a declaration much less than a year's former salary but it still hurt to make that choice.

    I am tempted to say it was liberating - but it wasn't really. It was hard - not because of my former career but at a more personal level. It did however serve to clear the decks and force me to really accept things: what my life now was. It doesn't help to know that the economic disaster has led to more and more personal bankruptcies as this is a very personal thing. Sure it means less I think today than it did in my parents time; but there is I think still a personal cost.

    Anyway, life since then has been better. Less worry and a clean slate even a new life. It can be hard re-establishing yourself, and I am successfully living without debt at present and have been for a number of years now. I didn't find it as hard as others thought I might living within a tight budget. I think I have accepted things now. Still makes me laugh that in order to go bust you have to find c.£500 to pay the fees :)
    aimossy, beaker, roxie60 and 5 others like this.
  14. RedLineBoy

    RedLineBoy

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    Your story reminds of what I wanted to do in life. While working in restaurant industry I too was interested in the field of computers. I started out working as an help desk analyst and moved up the ladder. However, after few years I realize that this is not what I wanted to do so I dropped my part time IT gig. It was intense to move up and must keep up with everything.

    I have no problem physically working because my current job is very very physically demanding. Trust me, I stock, sweep, mop all the things that come along as for working manager. Job sucks. Asked to do a lot for less pay.

    Reason I'm leaning toward health care is because of job stability. I need to choose an allied health profession that is not to taxing and will allow me to practice as I get older. By no means I desire on becoming a doctor, pharmacist, or any sort of such.

    However, I am open to nursing, mri, physical therapist or PA.

    Do you have any recommendation? I have no problem with schooling, because few semesters ago I started taking science course in chem, bio at local cc that I passed with A's. It did require me to constantly study my butt off. :) I was studying 8 hours a day non stop because short memory just sucks. Long term momory is not so bad.

    I would say that even with cognitive issues I can be a high B or Low A student. Now of course this requires me to study non stop.

    What do you suggest is a good allied health field? I would hate to study for two years and not have a career afterward.

    Thank you

  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    RedLineBoy

    I think an important question here is whether or not you have ME. Sorry, I haven't read all your posts and am not up on your medical history, but if you do have ME you might not be able to follow through with a demanding career unless you find really good treatment that can keep you stable.

    Have you had an ME diagnosis that you think is valid? That could be a game-changer as you can see from some of the posts above. I don't mean to be discouraging but this has been the reality for many of us. We tried to do too much, crashed and have not been able to recover our previous level of functionality.

    Sushi
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  16. LaurieL

    LaurieL Senior Member

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    If you are looking for healthcare, they will bounce you to the curb if you are chronically ill. It can be intense, long hours, call hours, and incredibly ill patients, and really bad bugs. The game changer would be if you think your immune system is up to the challenge.
  17. SOC

    SOC Moderator and Senior Member

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    RedLineBoy
    If you have the symptom chronic fatigue (as opposed to the neuroimmune illness ME/CFS), which seems likely based on what you've told us so far, you should seek out a good diagnosis. There are many causes of chronic fatigue which are treatable. Then you could pursue any career you choose. :)

    On the other hand, if you have the neuroimmune illness ME/CFS, starting and maintaining a demanding profession will be extremely difficult, if not impossible, as you can see from other posts in this thread.

    I suggest that before you pursue a career change you seek a proper diagnosis, or a second opinion from a reputable ME/CFS doc. My best hope for you is that you have a treatable condition that is causing your fatigue.
  18. RedLineBoy

    RedLineBoy

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    I know i have CFS because I've been tested for everything and the only two viral infection that I am positive to are EBV and CMV. After my initial viral attack I never felt the same.
    My symptoms are different than many except:

    Everyday I have following:

    Random Headaches, light head feeling, lack of concentration, bad short term memory, semi fatigue ...

    I need to take nap every day to recover, at least for 30 min to 1 hour.

    Do I have CFS? of course.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi RedLineBoy,

    If you haven't already, check out the International Consensus Criteria for ME:

    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract (you can click to get the full copy)

    It has very good information and is probably the "gold standard" for diagnosis. There are a lot of significant aspects of this illness that only someone who specializes in the disease would know to test for and interpret. Most doctors--even those who see many ME/CFS patients--are not really clued in on testing for indications of this disease. With the right tests you might test "out of range" for a many things that could be significant when choosing treatment.

    For those with ME/CFS, careful consideration of career choices could make the difference between decades of disability and "managing" some difficult symptoms.

    Best wishes,
    Sushi
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  20. SOC

    SOC Moderator and Senior Member

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    I don't see where the "of course" come from. If your symptoms are different from many, what makes you so confident you have CFS? Have you looked into orthostatic intolerance unrelated to ME/CFS? The symptoms you list in this post would be consistent with that (as well as other things). You'd be much better off with almost any diagnosis other than ME/CFS. If I were in your shoes, I'd be looking for a treatable cause of your fatigue, rather than settle for ME/CFS.

    Don't get me wrong -- if you have ME/CFS you have my utmost sympathy. It's a terrible, life-altering diagnosis. It's very difficult to get decent treatment, and often impossible to get decent treatment locally. When I first hear of someone newly diagnosed with ME/CFS, my first thought always is, "Oh, I hope not."

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