The First Years: A Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Poll

Discussion in 'Symptoms' started by Cort, Nov 23, 2015.

?

Please click on the answer that best fits your situation in the FIRST THREE YEARS - and NOW

  1. At my worst I was bedridden - and am still bedridden

    2 vote(s)
    6.1%
  2. At my worst I was bedridden - and am now mostly homebound

    16 vote(s)
    48.5%
  3. At my worst I was bedridden - and can now work part-time

    1 vote(s)
    3.0%
  4. At my worst I was mostly homebound - and am now bedridden

    3 vote(s)
    9.1%
  5. At my worst I was mostly homebound - and am still mostly homebound

    6 vote(s)
    18.2%
  6. At my worst i I was mostly homebound - and can now work part-time

    1 vote(s)
    3.0%
  7. At my worst I could work part-time - and am bedbound now

    1 vote(s)
    3.0%
  8. At my worst I could work part-time - and am now mostly homebound

    3 vote(s)
    9.1%
  9. At my worst I could work part-time - and can still work part-time

    0 vote(s)
    0.0%
  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    sick-woman.jpg

    Does how sick you got early on affect your prognosis? If you got really sick in the first couple of years, for instance, are you more likely to stay really sick?

    Some studies suggest that at least with infections - that being sicker early on - increases ones risk of coming down with ME/CFS.

    Others suggest that not getting better in the first five years makes it less likely one will recover...

    This polls asks how sick you got in the first three years - and how you are now.
     
  2. h3ro

    h3ro Active Member

    Sigh. This poll is useless for people who have gradually deteriorated. You imply that everyone has been at their worst in the first 3 years. I can't even answer.

    Also these options make no sense:
    • At my worst I could work part-time - and am bedbound now
    • At my worst I could work part-time - and am now mostly homebound
    • At my worst I could work part-time - and can still work part-time
    How can you be working part-time at your worst, then bedbound? They also don't make sense for the title of the poll either.
     
  3. Katrina T

    Katrina T New Member

    I think he means our "worst" during the first three years for the first part. (So at my worst in my first three years, I was "mostly homebound" and now I'm bedridden.)
     
    h3ro likes this.
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    It fits people who gradually deteriorated as well. Check this scenario out

    You graduallly got ill. During your first three years you could still work part-time - maybe you could still work full-time is well; the question just asks if you can at least work part-time

    But you gradually got worse - you had to stop working - and now you're homebound - so you fit this category

    • At my worst I could work part-time - and am now mostly homebound
    Does that work for you?
     
  5. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Yes, maybe that's the problem - the poll asked if being really ill during the first three years made a big difference or maybe some people weren't really illl and later got really ill.
     
  6. Katie

    Katie Active Member

    Yes, I think I get it.
    I could have worked part-time when I first got sick but probably would not have lasted a year at part-time.
    Gradually I got worse over the first 5 years then levelled out, then got worse then a bit better, then worse etc.
    I could not imagine even working part-time now. I'm out a bit but I'm sliding downhill again and I'm having an operation on my eyes next Friday (to correct the severe diplopia-double vision). Nervous yes. I just want to be able to see properly.
     
  7. 2Cor.12:9

    2Cor.12:9 New Member

    Wish there was a way to know how long everyone taking the poll has been sick because @ 29 years I've had extended times of "semi-remissions".

    My current answer is - "At my worst I was bedridden - and am now mostly homebound" - but really it's really mostly bedbound again.

    Previous years my answer would have been "At my worst I was bedridden - now am enjoying life but still can't work part time outside the home".
    Some of us are able to work PT at home only, and still have a fairly active life with pacing - until a major relapse hits, that is.

    We are just all over the map!!! There's no rhyme or reason to this beast.
     
  8. JennyJenny

    JennyJenny Well-Known Member

    Yes, I think with lots of dollars in research and 3-5 years that way they will find this to be a relapsing remitting for many and down the rabbit hole for that 25% (might be less if they had not been put through GET). Much like MS there are 4 different types. The worst you are dead in months or a few years, the best you can have a productive lifetime.
     
    2Cor.12:9 likes this.
  9. JennyJenny

    JennyJenny Well-Known Member

    Outside of the initial months sleeping from the worst case of mono the doctor ever saw and slept a lot and was mostly at home not working or going to school, within those first few years I worked full time. So my worst during the MONO I was not working and at home while infection was active but that was only 2-3 months and I returned to school part time and then when school let out worked full time. Whenever I would get sick I would ask for part time work not even knowing I had CFS and I did that for 20 years. And there you have it. Some people at their worst were functioning and it was a slow spiral down. There are people who got sick and had to take off school or work a couple months but crawled back know knowing they should not and it was at their worst they did work part time. Returning too soon was probably what set them up for going on that road to a slow downward spiral which can take years and even decades. It took 20 years to disable me.
     
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