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Advice on How to Get Rehabilitated/ Get a New Life on Improving?

Discussion in 'General ME/CFS Discussion' started by hopeandsparkles, May 27, 2017.

  1. hopeandsparkles


    Hi everyone, I don't want this to sound smug at all because I'm really not. I have been severely ill for 15 years and finally, finally Valacyclovir is really working for me- which is unbelievably exciting!

    However, as we all know, any kind of recovery is a rocky road and I am now finding myself casting about for advice and stories about how to drag oneself out of the pit of not-really-life into the real world and actually COPE.

    Does anyone know any books/ movies/ podcasts about inspiring people who reinvented themselves after a long-term disease? And does anyone have any advice about coping with "real" life?

    Whilst all my crashes have now stopped and my energy seems to be back again- I am worried about the emotional damage all of this has done to me. I still over-react a lot to people and get angry too quickly, I am still paranoid that I will not find it easy to sustain work. I feel overwhelmed by how little I have to show for the age I am because I got ill at College and have not been able to buy a house/ have kids etc. so feel unbelievably far "behind" my peers...

    Any advice on the rocky road to rehabilitation and reintegration gratefully received!
    SamanthaJ, Binkie4, ErdemX and 3 others like this.
  2. Jesse2233

    Jesse2233 Senior Member

    Southern California
    You might find this book helpful. I haven't read it yet, but Julie Rehmeyer talks about her recovery and presumably adjusting to life afterwards
    taniaaust1 and Diwi9 like this.
  3. hopeandsparkles


    Hi there @Jesse223, thank you so much for this reply. I haven't read the Julie Rehmeyer book either- is she the one who had the mould problem who went out into the desert? She sounds inspiring but, for me, it's turned out that antivirals are working so I'm not sure I can relate. But I guess the emotional side of her journey will be really interesting to read about.

    I have just discovered book called 'Stronger than Yesterday' by Mary McCarthy- a lady who had cancer and wrote 2 books during it and while she was recovering- to help other survivors of serious illness. This is the second book nd designed to help anyone recovering from serious illness- it's actually completely wonderful- I'd recommend it to anybody. Not sure how easy it is to get hold of though? She's Irish and there don't seem to be so many copies knocking about online. Still worth mentioning I thought! I wonder if we could get a thread going about helpful books/ movies/ podcasts?
  4. Fogbuster

    Fogbuster Senior Member

    I don't have any inspirational ones about people recovering from long term illness, but here are a few resources I've found very helpful in my pursuit of learning how to cope and thrive (when I'm better of course!):

    - How to win friends and influence people
    - The 48 laws of power
    - Tony Robbins
    - Tiny Buddha blog
    - Marc and Angel hack life blog

    Good luck! :)
  5. hopeandsparkles


    :) Ahhh @Fogbuster! So kind! Thank you!

    I think I am going to start a thread where everyone can share this sort of thing. Might be nice for people to find lots of suggestions in one place!
    Fogbuster likes this.
  6. sjaakafhaak


    Dear hopes and sparkles,

    Exciting times, a life you probably had not expected anymore. I can imagine the anxiety also, however, I can assure you this will fade away. The memory is build in a way that it can forget the 'bad things' to an extend and I am sure this Will be the case for you as well. In a few years you will still think about this period of illness but not 24/7. In my remissionish period this worked for me as well.

    Are you currently employed already? Or are you looking for a job? My advise is: instead of focusing on the 'behind your peers' you have certain experiences that others don't. You can show you are persistent, you went through all this misery and now you are extra motivated to take every last bit out of life, including jobs, relationships etc. Also What I find is that people really like to hear about success stories, the 'I am doing much better now' story brings positivity to everyone, so make the story a bit heroic and pretty and use that to explain the hole in your CV. Everyone exaggerate their own part in this, so you should do that as well.

    Also remember, there are lots of people who had the whole house/relation/kid thing and lost it all due to the financial crisis or divorce or something , so you are not the only one your age 'behind peers' in that perspective.

    My advise: don't put yourself down, enjoy the new life and don't be afraid to ask your close ones for advise. And otherwise the people on this forum including me are probably not going anywhere ;)

  7. Basilico

    Basilico Florida

    This is good advice. Plus, keep in mind that many people get married, buy a house, have kids just because they think it's what they are supposed to do, not because it's what they want to do. Hence, the unbelievable number of mid-life crises. It is extremely common for people to suddenly realize that even though they did 'what they were supposed to' they are neither satisfied nor happy with their lives. Spouse+kids+house rarely is the formula for happiness. It does work for some, but those tend to be people who have extremely limited goals, interests, and personalities. I'm not insulting these people, I believe everyone should understand what makes them happy and go for it. But if you really pay attention to how most people phrase things when they talk about their lives, it is pretty obvious that very few are feeling content with their choices.

    You are feeling like you have a lot of time to make up for - and maybe what you've gone through can give you a really good perspective on life that most other people don't get until they are much older. You know how precious your time, your energy and your life are, and I think that you will find the way to seize the day. Don't waste time comparing yourself to your peers, you will never be happy doing that. Instead, focus on what you really want - what have you been dreaming of doing all those years you were sick? What places would you have wanted to travel to? What hobbies would you have loved to pick up? What skills would you like to develop?
    sjaakafhaak likes this.

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