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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Do you work / have career?

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

  1. SOC

    SOC Senior Member

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    Where are you getting this idea? Lots of us don't work part time, much less in our chosen professions -- certainly not enough to support ourselves. Many people with ME/CFS are dependent on family or public aid.

    You're basing your own opinion on what? That you haven't met many? So that means doctors and lawyers don't get it?
    Exactly how many people have you met with CCC or ICC defined ME/CFS? And why, if you haven't met many doctors and lawyers who have it, would you think they're working? If you haven't met them, how do you know what they're doing? o_O
     
  2. GracieJ

    GracieJ Senior Member

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    This is definitely a rock and a hard spot scenario for all of us. Making a living while avoiding crashes and trying to figure out health insurance, let alone retirement, can be daunting. The last two have not come together for me. I do a lot of praying! There are many on here who have resorted to credit cards, then when those run out, declare bankruptcy with no clue where to turn next. Some have known homelessness.

    This sounds awfully bleak as I read over it. I do not mean it to sound like that. While it is reality, it is also possible to come to terms with all the uncertainty and move ahead with life with determination, courage, and a sense of humor.

    I am typing this from my bed today. It is nearly 5 pm, and I have yet to pull my "day" together. Sleep has become elusive once again, some nights yes, some nights no. The good nights, working the next day for a few short hours is manageable. The bad nights, the next day is slogging through Jell-o.

    I chose 15 months ago to resume my career as a massage therapist. Yes, the work is physical, but so is sitting behind a desk, if you think about it. Having done both, believe me, physical is actually better. I am moving, stretching gently, alternating with sitting down. Breaks are frequent. The days are short ones but still make me checks close to what I could do 40 hours behind a desk in this area. My bosses do not know specifically what is wrong, just that something is. It is taking longer for me to get my percentage of requested therapist appointments rolling. I have looked into retraining in several areas, and the bottom line always is that 40 hours of work would be required in a lot of fields. No go. 8 am in the morning is also impossible. My work days start after noon. I need it that way.

    As long as I can do this, I will. Helping others eliminate their own aches and pains is profoundly fulfilling.

    Next action is strategy for the long-term.
     
  3. SOC

    SOC Senior Member

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    The working hours is another important point. I have to sit upright in bed, take my morning meds, chug my morning 500-750 mls of electrolyte drink, and wait until my HR and BP stabilize some before I even get out of bed in the morning. That takes about an hour. I can't rush getting ready (showering, dressing) because my HR and BP are still a little erratic. It's really not until about 10:00am, maybe 9:00 on a good day, that I can reliably be ready for work. I've tried scheduling students as early as 8:00, but I'm not reliable then. If I try to work before my meds and fluids kick in, I'm a mess the rest of the day. Not a workable situation for a "normal" job.

    I also need 9-10 hours of sleep, so it's not like I can get up at 5:00am to be ready for an 8:00 am job. At least, not if I want to see my family.

    Fortunately, I tutor 20 hours per week for families who understand that I have limitations and are willing to work with them. It's sure as heck not the profession I trained so hard for, and it certainly doesn't begin to pay the same. I make maybe a fourth of what I could have made per hour in my chosen profession and I don't get paid leave, insurance, retirement..... Still, it gets me out of the house these days, gives me some satisfaction, and pays a few of the bills.
     
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  4. GracieJ

    GracieJ Senior Member

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    SOC. A big AMEN and DITTO to your post. I move very slowly getting ready, conserving energy for the day. The 20somethings at work are running circles around me wondering why I move slowly, like changing over the table. It just works better energy-wise. It helps that I am old enough to be their mama. They do not mouth off too much about it... Just some!
     
    SOC likes this.
  5. SOC

    SOC Senior Member

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    I don't take much crap off the young'uns. ;) I tell 'em I'll trade my chronically ill and slow for their healthy and fast any time they want.
     
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  6. GracieJ

    GracieJ Senior Member

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    Lol I just smile and give it back to them with a one-liner they cannot answer without really showing their own embarrassing faux-pas moment. :)
     
    SOC likes this.
  7. WillowJ

    WillowJ Senior Member

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    There are other patients who can also work some.

    There are also patients who cannot work at all. Not only due to loss of physical and mental stamina, inability to remain upright and so forth, but also due to loss of fine motor skills and even gross motor skills. Also word-finding problems and other communication difficulties.

    Lots of us do have memory problems. We do forget stuff we learned in school and in our previous jobs (I do and people I talk with do).

    Not surprisingly, there is a whole range of severity, much like there is in many other diseases.

    There are a lot of diseases, whether ME or CFS or whether cancer, Lupus, MS, MDD, etc., for which it's not possible to say "patients with this disease can ____" as a blanket statement. Lots of diseases are different for the various patients affected, and ours is one of these.
     
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  8. RedLineBoy

    RedLineBoy

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    I am concern and confused, actually both. As of now I am able to work 50 hours a week without any help. I can get up at 5 am and go to bed at 8 pm, in between I require one to three hours of nap. However, I can physically work. My cognitive is not so good.

    Does this place my CFS in less sever category than many on this forum?

    Will my functional ability decrease as I age?

    The more I spend my time on this forum the more I learn how sever CFS has effected you in all way.

    Deep down I also know that if I was to get ride of my light headed and was given my concentration back I would feel normal. But that is far from bleep. I might win a lottery before my body is able to get ride of light headed.

    Should I be concern for the future to come?
     
  9. Valentijn

    Valentijn Activity Level: 3

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    Hi, I'm a lawyer, and I'm certainly not able to work enough to support myself. My cognitive abilities are pretty poor compared to before I got ill, and my illness fluctuates enough that I'd be very unreliable for any clients - basically I'd be badly violating the ethical regulations of my state bar.

    Getting sick a couple years after graduating from law school has also left me with a huge amount of student loan debt and no way to pay it.
     
    SOC likes this.
  10. GracieJ

    GracieJ Senior Member

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    Cognitive difficulty is the main reason I decided not to pursue any new training. It is enough getting from day to day with the issues I currently have. I cannot imagine having this oatmeal brain as a nurse or engineer. I quit doing secretarial work because I could not remember five minutes later what was said in an important phone call. That just does not fly, and I would sweat buckets holding it together while I transitioned to something physical and right-brained, more like muscle memory for riding a bike. It is a blessing that at my most tired I can still figure out why, how, and where a person's body physics are off and do what is needed to correct it, so there is a mental aspect to the job, but nothing near other occupations. I do have trouble remembering correct terminology to record notes, and really have to think about it. The best part is working with people! When a word doesn't come, a joke can to lighten the moment.

    RedLineBoy If your diagnosis is indeed ME/CFS, count yourself lucky to this point, then stop working fifty hours a week. You are asking for trouble big-time if you have a constellation of symptoms that match the International Consensus Criteria. Read the stories here. It could be you. If your diagnosis is more toward the chronic fatigue label with more limited symptoms, count yourself blessed, learn all you can, and do what you need to get well.

    My worst issue when this started 23 years ago was denial: I told myself I was fine, just needed to push. Yes, I pushed, all right. Pushed myself out of a second marriage, can barely remember my children growing up, pushed myself through a certificate program as a single mother, pushed so hard working to make it all come together, I crashed completely and ended up without housing, a car, or a job. Most of my belongings were sold to buy food. During the time period, I declared bankruptcy. I am blessed now to be where I am, but it has come with a heavy price with a flood of ruin behind it. Family members just think I am crazy, to add insult to injury, and are little help.

    This may never be you, but be smart enough to prepare ahead so it never is. The story is all too common here.
     
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  11. Firestormm

    Firestormm Guest

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    Rings bells with me too. My ability to perform my career role - at the time of onset - was primarily the reason I asked to be moved to other duties. Basically, I found I was unable to keep up with the speed of mental demand, of processing, and I became less and less accurate. Bad thing - as you would no doubt agree - when you start to question your own decision-making.

    I was and consider myself still, to have made the right decision in one respect and that was to 'come clean' with my bosses. Although I was fortunate in some ways that other signs had also been commented upon. So the decision was mutual and mutually regretted.

    Those student loans are a bitch aren't they? I dare not allow myself too much time to think about them. Here in the UK things are different of course - yours are in the US I guess (?): anyway; even in my last attempt at work full-time it was a job whose salary even with my pension, fell short of the required amount to begin repayments.

    What I mean to say here is that working again need not mean for everyone that they have to start repaying the loans. Although I guess if any of us find ourselves able once again to attract larger (former) salaries - we would not begrudge repaying this debt :)

    n.b. Student loans are not written off as part of bankruptcy.
     
  12. golden

    golden Senior Member

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    I was going to add something that i thought may help people a while ago on student loans.

    In the UK, if you started univ before 1998, and have had a clear period of 6 years (5 in Scotland) of no contact with the s.l.c.
    you can declare the loan /s Statute Barred.

    There is also something else . But I am fuzzy. Student loans can be written off due to long term illness. prob need to be signed off permanently by doc.
     
  13. Valentijn

    Valentijn Activity Level: 3

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    Yeah, too often I miss way too many details, etc. I'm okay if I'm focus on one little thing at a time, often slowly, and with random days or weeks where I can't even do that, but I don't know of any jobs I'd be qualified for currently.

    Actually I have to pay about US$550 per month whether I'm working or not. Private loans allow very limited time to be disabled or unable to find work, etc, and government loans are nowhere near high enough to pay for law school.

    Only my government loan doesn't require payments if I'm not earning anything, or earning very little.
    They are in the US, if it's shown that we can't make the payments. The loan companies can offer more affordable payment schedules to try to make the judge happy, but in a lot of cases anything more than 0 is unaffordable.

    But if the loan has a co-signor, then bankruptcy doesn't help make that loan go away. And one of my private loans has a co-signor.

    The government loan can also go away without bankruptcy, if I can document that I've been fully disabled for the past 5 years, or that I'm likely to be fully disabled for the next 5 years.
     
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  14. Firestormm

    Firestormm Guest

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    Student loans were those from the (essentially) UK Government that I was talking about, Val, just to be clear. They aren't covered by personal bankruptcy - neither are other Government debts to e.g. HM Revenue; but you need to earn more than I think £16,000 a year in order to begin very low repayments of your student loan. So if you aren't earning you aren't expected to pay. Not sure how many times in say an unemployed life you can keep returning to education with a new loan - not thought about that before - might be an idea actually for those who can; there's probably a limit to the debt though :)
     
  15. peggy-sue

    peggy-sue

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    I have to pace just to survive. I "juggle" between washing myself and doing some cooking/laundry and having a little walk outside every few days. I only shower once every 6 days now - otherwise I simply can't do the other important basics of living. A couple of times a year I do "save up" a load of energy and have a long weekend sort of holiday, it's wonderful for my mental health to pretend to be nearly normal for a short while.

    I had to miss my Dad's funeral. I was too ill to go.


    I'm incredibly lucky that I have a very supportive (working) partner - or I'd probably be dead on the streets.

    RedLineBoy - you do not say you suffer from PEM, I would strongly suspect you have something other than ME causing your fatigue. If this is the case, you do have hope that you will find you have something you can recover from.
     
  16. Lala

    Lala Senior Member

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    I agree with peggy- sue. If only cognitive issues are problem, then it can be mild or moderate encephalitis. One does not need to be horribly tired physicaly in such a case.
     
  17. PennyIA

    PennyIA Senior Member

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    I've had about three periods where I was incapable of working (unable to remain upright) - but have worked steadily otherwise. I was getting up at 7 and crashing by 7 pm and struggling throughout the whole day... but I could work ... as long as I gave up on some expectations of having a clean house, laundry caught up, clean dishes, etc.

    BUT, like you... I worry about the future. So my plan is to pace myself - do the best I can without making things worse. Explore all affordable treatment options, just in case....

    AND make sure my Long Term Disability, Nursing Care funding and 401K are in as good a shape as I can possibly make it. The more I make now, the more I would get in 401K and disability if I have to file in the future. If not, there's no harm done... but if I need it, I want it to be as feasible as possible for me to be able to support myself in worst-case-scenario.
     
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  18. RedLineBoy

    RedLineBoy

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    I just came from seeing a doc and what a disappointment. I told him all my symptoms along with symptoms that are related to POTS and all he does is go on telling me how cmv and ebv are the cause of majority of the symptoms because my immune system is fighting therefore creating all these strange symptoms.

    The doc basically wanted to do additional blood work and possibly refer to neurologist for headaches and lightheaded feeling. Well I've already been to one and that's a disappointment as well. They do all these bunch a expensive test to check for things they know could cause the issue without any justification.

    At the end I'm told that its CMV / viral infection causing the issues.

    Sometimes i wonder why do I bother to go see a doc.

    Doc also told me that I'm probably 5% of population that suffers from chronic infection of EBV / CMV. Says most people do not. In that 5% i'm probably in the middle that has less sever of the symptoms compare to many other. This is utterly bs because why would god select me to go through all this.

    Why me? I can't seem to get over the denial

    Thank you
     
  19. RedLineBoy

    RedLineBoy

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    Other than to offer me Nuvigil or Adderall he tells me he wish he has a better answer then he doesn't know and can't do anything about it.

    Has anyone tried adderall? If so, how do you feel?
     
  20. RedLineBoy

    RedLineBoy

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    It's not encephalitis, that is for sure.
     

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