Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Much Better after 2 Decades, Now What?

Discussion in 'Lifestyle Management' started by greysonjames37, Jul 14, 2015.

  1. greysonjames37

    greysonjames37

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    I've been sick for over 2 decades. Started in my mid-teens. You know, the time when people reflect back on in middle-age, and remember how much energy they had back in high school. I never had that.

    So my whole life since high school has revolved around building a life that allows me to cope with this illness. I didn't take high school classes based off what interested me, or to be with my friends. I took classes based off what I was capable of completing.

    I didn't choose a college based off my aspirations, I picked a college that wasn't too hard or too draining, something I had a chance at completing. And I didn't pick a major because I loved the field, but because it was easy enough that I had a chance at graduating, and not failing out.

    I didn't choose summer jobs off of what I wanted to do in life, I chose summer jobs based off of what my body would allow me to do.
    Same thing for my adult career/job life. I picked things that I could do, not what I dreamt of doing or was passionate about. Heck, I was passionate about being able to keep a job, so any job that I could hold onto with this illness made me feel amazing, that sense of accomplishment that is so important to the human soul.

    But now I'm much better. Not cured, but a seismic shift in my illness. The most notable difference is that if I crash, I can get better without having to completely shut down, eg go into rest mode for days/weeks.
    This is great. It's amazing. But now my work life, that I've built around this illness, is no longer so fulfilling, and I question it all the time. The bar for that fulfillment has been raised. It's like being shot back to my teen years again, where one thinks about the field they're passionate about, and then works toward that career. Except I'm in my late 30s.

    Also, I've worked very hard to build a career around this illness. Trying something new bc I'm feeling better is risky, as I'd have to leave what took 2 decades to get to. And I'm definitely not 100% better, so there's the great risk of failing at any new venture due to this illness.

    It's a weird place to be. A good problem to have, coming from where I've been with this. But still a problem. Not sure I really have a point with this.
     
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  2. ukxmrv

    ukxmrv Senior Member

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    I can understand your position. For most of your adult life you have not had the freedoms and choices that other physically well adults have had. Everything that you did was from a list of small possibilities of things that you could do, not things that you wanted to do. That's really hard.

    In many ways it has been a limited life but one that you did really well in (given all the challenges you had). I also chose my job etc from what I could do physically and had the same sense of achievement when I could support myself (not any longer sadly for me)

    I think that if I was ever in your position I would feel a sense of grief as well as the much stronger relief when contemplating my life. I'd look back and see that I don't have the education or qualifications for what I really wanted to do. So many other things would have been lost as well and the list is going to be different for us all(children, partners, driving tests, homes and other assets like pensions) and some of these can never happen in the future for some of us.

    The risk with ME as well is that it can relapse so these could be a temporary phase and the disease come back.

    I'm really glad that you are better after 20 years. You certainly deserve a break. If I was in your position my personal feeling would be to treat it as an opportunity to do some things I have always wanted to do but physically been unable to. Then if the disease comes back I will at least have these memories.

    Hope the good times last though and you get a chance to have a permanent and better life.
     
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  3. Valentijn

    Valentijn WE ARE KINA

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    I agree that a shift to a potentially more demanding career could be risky. But maybe you can seek some part-time education in a direction you're more passionate about? Education doesn't have to be an investment in a career, but rather can be an investment in yourself.

    If there aren't any suitable part-time programs or continuing education classes in your area, Coursera is a pretty good option, and free as well. People have the option to pay a bit for the classes and undergo a verification process during exams if they want to potentially be able to use the classes in a more official manner.
     
  4. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    First of all, I admire that youve been able to pull through two decades(!). That is some Nelson Mandela right there, only he was not chronically ill..

    Personally, if I was in your position, i would not make any drastic changes.. I would wait for rituximab to become available.. And probably try IVIG if possible.
     
    greysonjames37 likes this.
  5. Battery Muncher

    Battery Muncher Senior Member

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    Congratulations on your improvement! What career did you go into, if you dont mind me asking? I'm looking for work that I can handle with this illness.

    I'd have to agree with the above responses: it's too risky to make a drastic change right now, given the number of people who suffer relapses after a period of remission. It's best to wait for effective treatment to become available.

    However, as @Valentijn points out, it might be worthwhile to make moves in the direction you want to go in the meantime. So continuing with your present career, but moving towards where you want to go in your spare time.
     
    Valentijn likes this.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Well done on what you have achieved and endured! I had looked at your post this morning then logged out, and this song came into my mind, which I then posted in another thread as it seemed relevant to ME generally.

    Then after lunch I tried to find the thread that sparked it off again, and have only just managed to find it.

    I'm sure you know that the chances of full recovery are vanishingly small with this illness, so I think you need to continue being very cautious, but don't believe the lines in the song:
    Where there's life there's hope, and as @Marky90 alluded, there are treatments in the pipeline that may do the final trick.

    You must be a lot younger than me, so you have a good chance that you will see the day when a proper cure is available.

    Until then, I agree with @Valentijn's suggestion of an online course. I studied science with the Open University, and although I developed ME a year into my studies, so have never been able to make a career out of my academic success :bang-head: (must resist :cry:) I have at least been able to do a little paid freelance research and also research my own illness when I have time.

    Maybe go with your passion as a hobby or in a flexible voluntary context if there is no way to do it in a paid context. If you can fulfil your passion without making money from it, would that be rewarding enough (or even possible)?
     
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  7. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Amazing song! Very Pink Floyd-esque, and the lyrics fit us all too well.. :)
     
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  8. Esther12

    Esther12 Senior Member

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    Gone to www.s4me.info
    Good luck with whatever you decide to do with your improved health.
     
    greysonjames37 likes this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Marky90 likes this.
  10. Apple

    Apple Senior Member

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    Write a list of all the things that you've ever wanted to do. Start with the little things and see what happens..

    And of course look after yourself.

    I'm so happy for you :):balloons:
     
  11. Marco

    Marco Grrrrrrr!

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    Fanatastic for you and I can appreciate the dilemma. Because of ME/CFS I ended up working in the public service - not at all what I wanted to do but in the end it was the best thing for me as I ended up being medically retired and at least ended up with a small pension. Doesn't stop me missing what might have been or stop me hoping there's some sort of future even in my 50's.

    All I can say is that you're young enough to make a fresh start health permitting but you're also very aware that nothing can be taken for granted with this illness. Maybe take advantage of this period of relative wellness to expand your non-work activities which are often the first things to go and can give a lot of fulfillment and see how it goes. Once you're out of work absolutely it's hard to get back in.
     
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I just didn't know what I wanted to do until I was in my 30s, by now stuck firmly in dead-end, mind-numbing jobs (civil service in the end). Starting studying at 42 in order to try to get into a science career, and wham - ME hit. End of career hopes now. Only real prospect now is state pension next year. Not what I planned. Maybe I'll write a book - try to find some kind of posterity. I want to achieve something - for there to be some kind of identifiable point to my life. Bit of an existential crisis at the moment!

    But as @Marco says, it's definitely not too late for you, @greysonjames37!
     
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  13. Marco

    Marco Grrrrrrr!

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    You live in Cornwall and have good taste in music - what's not to like?

    (I fully feel your 'existential crisis' BTW).
     
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  14. Strawberry

    Strawberry Senior Member

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    I know someone that is about 60 and just about to receive her PhD in geology. If you are physically able, then its not too late to follow your passion.

    But I also agree with what others have said here, that maybe keeping the easy and mundane job and following life passions as you are able. I do accounting as it is physically easy, as long as I don't get so sick that I have severe brain fog.

    I am hoping that one day I can get healthy enough to enjoy life. Maybe date, find a partner that is content with "not eating at restaurants and going for long romantic walks on the beach and hiking in the mountains"....... But I have given up the passion for following my desired career. There are other ways of making life rewarding if need be. I'm keeping the boring career.
     
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  15. greysonjames37

    greysonjames37

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    I'm blown away by the responses here. It means a lot to just have people who understand where I'm coming from.

    The general sentiment seems to be to remain conservative here - I agree this is the best choice. Better to put myself in a situation where I have "more" energy than I need, than to end up overdoing it. We all know how it goes with overdoing it.

    Thanks again everybody. This means a lot to me.
     
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  16. greysonjames37

    greysonjames37

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    You hit the nail on the head with this quote. I think I'm having a mid-life crisis combined with the limits of CFS, but limits that have recently changed dramatically, thus confusing things even further!

    To make things even more confusing, I'm not even sure of what I want to achieve, as thinking about this has always been within the context of CFS.
     
    MeSci, ukxmrv, Sidereal and 1 other person like this.
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    How long have you been feeling better for? I expect that you have considered that it might be remission rather than recovery.
     

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