1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
California 2014: IACFS/ME Day Two: Translating Science into Clinical Care: 21 March 2014
Searcher kicks us off on Day Two, with an autoimmunity overview, then we are into immunology and cytokines, we hear from Susan Levine and the allergy-related signatures study done with Lipkin et. al, a talk about paravirus B-19, Mady Hornig from CFI with more research, John Chia who...
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Do you work / have career?

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

  1. Lou

    Lou Senior Member

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    RedLineBoy Unlike most here my brain often lacks proper censoring. What I said about you user name was patronizing, stupid. It could refer to anything, point being I don't know, and none of my business anyway. I hope you'll accept my apology, and I'll edit that post soon as finished with this one.

    You have this illness and as I've said before anyone who does has my deep respect on that circumstance alone.

    Sometimes you need a bit of a thick skin here (for few like me), but I think you'll find at bottom what we're all trying to do is help one another. Hope we hear from you again soon.
    peggy-sue likes this.
  2. peggy-sue

    peggy-sue

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    I didn't think you were patronising, just being kind, Lou. :love:
    But I also suffer from tangental brain mis-censoring.....:p
  3. Lou

    Lou Senior Member

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    I think Ecoclimber is giving you some really good advice. Scary move, but from your own description of situation few, if any, better options remain. You've got to rest. For an extended time. I know I did, even though the choice wasn't mine. The two years you mentioned seems reasonable.

    Those 'few years I didn't want to remember' (approx. 2.5) was my 'giving up', but no way would the rest of my story have been possible without it. I sort of disappeared, going back and forth on my own exit strategy (can't stressed to you enough how thankful I've long been for not doing that) before my brother found me. He was the first (and convinced the others) in my family to recognize they had been wrong to believe the doctors and their tests instead of me.

    So, mentally and emotionally, not literally, I went kicking and screaming back to my hometown. And I finally allowed myself to just collapse. And rest. And then, when I was stronger, my luck changed.

    It very well could change for you, too.
    Olena, rosie26 and peggy-sue like this.
  4. Lou

    Lou Senior Member

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    Some more thoughts, for whatever it may or may not be worth:

    If you find your sabbatical it would be time well spent in finding what you love to do. I suspect just reading between lines that may involve something creative. For that, you live in a good time. It's no longer a given you must have a producer or an editor or agent or sponsor or third party anything to present your work. The internet and all sundry of new technology make possible an alternate route if needed.

    If you're able to take this extended break there's a good chance your thinking and decision making will improve with time. But I wouldn't discount entirely your non cognitive traits to see you out the other side (of the extended break).
    aimossy likes this.
  5. taniaaust1

    taniaaust1 Senior Member

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    You seem to lack a lot of confidence, that is something counselling could help. You certainly are not coming across as writing like a fourth grader, your writing is very good. You seem to be making comparisons between yourself and others which to me dont seem to be correct (Im not noticing that you are worst then others here in regards to your writing skills). You may be slower then you once were at things but you certainly arent like a fourth grader (that's an extremely low impression of yourself and not reality).

    For myself, it is true that I type very fast but my typing speed is way down for me due to this illness, before I was sick I was typing faster then 67 words per minute. I also are making LOTS of errors in my posts (my typing before ME used to be almost fault free) but now have to go throu my posts at least 3 times to correct the very obvious errors I can see and miss as I type. If I have to "think" while Im typing, I find that quite hard, instead I just allow my thoughts to flow to my fingers. (umm it would be interesting to test my typing speed now to see just how very much it has been affected by this illness).
    aimossy likes this.
  6. aimossy

    aimossy Senior Member

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    hi redlineboy how long since you got sick?
    I was able to work for a while after first getting ill for about a year and a half.
    I feel its important if things are not right to cut back...if you can.
    I would not recommend working in health.it will be different from what you are doing but has intense stressors in different ways.
    have you thought about administration management?(maybe not if hard to stay focused if not staying physical)
    however if you get sleepy when not busy doing physical tasks tell your doc these things.
    sleep studies???
    post viral sleep disorder???
    do you fall asleep easy during the day??
    I am no expert just another sick person throwin stuff out there.:)
    rosie26 likes this.
  7. Lou

    Lou Senior Member

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    Though it may be a simple word I know the meaning of there are a few I seemed bound to misuse. One of them is the word figuratively, used it here in a recent post with the opposite meaning intended.

    You just have to sort of laugh it off, it's probably going to happen again soon enough.
  8. taniaaust1

    taniaaust1 Senior Member

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    My ME brain cant remember what that "figuratively" word means anymore. My vocabulary has really fallen due to my ME, I rarely now use long words. (I was a A grade English student too in my last year of high school and well above average in vocabulary before I got ME). My word ability I'd say would be down probably about 50% to what it used to be
  9. RedLineBoy

    RedLineBoy

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    Today for instance was a great day. I feel 100% cognitively sharp. But the truth is far from real. I know tomorrow my fatigue will creep right back along with headaches and feeling dizzy.

    I've been ill for 10 years now. However, knock on the wood, I feel I can work just fine. I work 55 - 60 hours a week in a restaurant as a GM.

    What I'm about to say should make us all feel good. I manager over 25 people and I can honestly say half of them are so slow and lack cognitively intelligent to comprehend simple instruction. These people don't even have CFS. So sometimes when I look at it in that perspective, I feel good.

    There goes my dream of working in health care.

    Not knowing that I will not succeed in life of what I wanted to do is really depressing.
    aimossy likes this.
  10. Thomas

    Thomas

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    RedLineBoy cheer up man. You are working and having good days between the crashes. maybe see if you could work a little less and balance a bit better. No one really knows what to do with their lives whether they have ME, something else, or nothing at all. Just beause we don't really know what ME is doesn't mean we can blame everything we have on it. Sounds to me that even if you were physically 100% healthy you would still have some sort of negativity syndrome. Maybe work on that and you may feel a bit better.
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    You are young and have a very mild (so far) case of ME. Knowledge of ME and it's treatment is slowly increasing. I think there is a good chance that you will recover, or at least get the ME well controlled, and have a successful life.

    In the meantime, I (who have not medical expertise) think that you should focus on not making yourself any worse. Can you work less hours and still support your family, even if in a style less that to what they have become accustomed?
  12. Thomas

    Thomas

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    Little Bluestem you're above comment is very encouraging and kind. I love when I hear the word recovery. Even though I have only been ill for 2 years, I really hope to at least make a substantial improvement over time. Did you improve over time?
    Little Bluestem likes this.
  13. vamah

    vamah Senior Member

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    I know very few people who had their lives turn out how they had planned when they were younger. It is easy to get discouraged, I know. Both my siblings have PhDs and I never finished college. I have never had a real career and I live in an area where the first thing anyone wants to know is "What do you do?" It used to bother me that I didn't have an impressive answer to that question. As I've gotten older and smarter I realized: fuck 'em. I've raised 2 kids to adulthood and they turned out just fine. I can't think of any high powered career that would have been more important than that. You are taking care of your family, to spite being sick and that's something you should be proud of. Maybe you will never have the career you dream of, but you have other things. Focus on those.
  14. Antares in NYC

    Antares in NYC Senior Member

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    Hi Lou, thanks for your advice. The last couple of weeks have been pretty intense with work, which kept me from posting or even checking Phoenix Raising.

    Work has been intense and very stressful. In my first two weeks I have worked over 60 hr weeks, weekends, and a 2-day business trip. This past weekend I was so absolutely fatigued I spent most of it either sleeping or in bed, zero energy.

    Yes, this is not sustainable. I need to get out of the rat race, because I know it will destroy me. I don't think this reality has been as palpable to me before, coming home so utterly tired and broken to be scared for my well being. I definitely need too find a way out of this nightmare, with no idea of how, where, or how soon! Part of the problem is living month-to-month (part of the "charm" of the NYC life is always being broke), and carrying a sizable chunk of debt.

    I totally get your point about "doing what you love". Totally do. More than that: I very much yearn for the creative career I would love to have, and I wish every day I could do nothing else. Unfortunately, ME/CFS took away my energy, my mental sharpness, my confidence, and my creativity. To add insult to injury, my current work involves catering to creative folks who do exactly what I wish I was doing. Gee, thanks, universe! Sigh...

    I really wish I could take that break, a sabbatical from life, that would allow me not just to recover my health and cognitive abilities, but to regain the time I lost, and restart my career to do what made me happy and complete.
  15. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    During the first 5 months after I got the 'flu' that started all of this, I very nearly recovered. I then began a slow 27-year deterioration. I did not know what was wrong for years and pushed to do as much as I could, resulting in a perpetual push-crash cycle. I lost my job over a decade ago and now ‘work’ at helping my elderly mother. I do take better care of myself now, but have not figured out how to turn this around. That is why I urge you ‘youngsters’ to pull out of the nose-dive early.
    Marlène, Lou and Valentijn like this.
  16. Thomas

    Thomas

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    Thank you. I'm definitely in a push crash cycle. do you think 22 months of illness is too late to turn it around? I have decided to take a break from my career as a real estate agent for a while as it is becoming too much on top of just regular life and my new girlfriend. or do you mean check out of all activity?
  17. RedLineBoy

    RedLineBoy

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    What do you do? Type of field?

  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I do not think that 22 months of illness is too late to turn around. I think there are people on this board who had been ill longer than 22 months, then turned it around. Actually, I have not given up on turning my own health around.

    I mean to get your self to an activity level that you can maintain on a day to day basis. I doubt that will mean checking out of all activity. Are you familiar with the concept of pacing? If not, do a search on it here.

    Of course, once you get yourself stabilized, you will want to look into making improvements. There is all sorts of information on that here. If you have sleep problems, as many of us do, that is a good place to start.

    Is real estate sales something you could do part-time when your energy level allowed?
    Thomas and SickOfSickness like this.
  19. Thomas

    Thomas

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    Ya if I could get back to how I was even a year ago I would be able to sustain part time work in sales. unfortunately right now the total body exhaustion is just too much.
    Little Bluestem likes this.
  20. Antares in NYC

    Antares in NYC Senior Member

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    Hi RedLineBoy, Lou and others:

    I work in the second most stressful industry in NYC after finance, which is is advertising, or rather the area where advertising and high-tech meet.

    Before CFS I was extremely sharp and creative. From high school to college I wrote and directed theater plays, was in a number of rock bands, and after college directed a number of music videos. I was a multitasking machine when it came to creativity, bridging over different fields and disciplines. Nevertheless, I wanted to direct films, music videos, etc. I felt that the visual medium was ideal for me, so I started working in advertising agencies as a creative right after college.

    ME/CFS hit me three years into my work career. I felt the hit immediately, as it affected my cognition and creativity quite badly. After that awful first year I improved a bit and felt better for a few years, but not at 100%, more like 80%. Many CFS patients experience a few years of remission after that first year, although the disease never quite goes away. During those years of remission, I slowly moved away from creative positions to more administrative ones. During those 4 or 5 years I still remained creative, and directed two short films that premiered at film festivals, one of them getting a 'best director' award.

    Last time I held a truly creative position was 2005. Then, around 2007 my health started worsening, and the ME/CFS got really bad. Since 2007 it has been a downward spiral with this disease. I'm at 60% of energy and mental capacity on a good day, and still have to work full time to stay afloat! I no longer seem to have the energy and agility to focus on creative work. My current work is very stressful, and involves managing the time and schedules of other creatives under very tight deadlines. I don't get to do creative work, I just watch others do the fun stuff. Sigh...

    I have not touched a musical instrument since 1997, I have not made a film since 2005. It's all gone downhill since then. I'm a shadow of who I once was.
    Little Bluestem likes this.

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