1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Coping with Chronic Illness

Discussion in 'Lifestyle Management' started by slayadragon, Dec 7, 2011.

  1. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    CFS patient, toxic mold avoider and life coach Maggie Laura McReynolds talks about coping with chronic illness.

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    10 Things People with Chronic Illness
    and Pain Need to Know

    1. Your physical condition does not define who you are. As all-consuming as dealing with physical limitations can be, you are more than the things you can or can't do. You are your ability to give and receive love. You are the unique sculpture that is your soul. You are your interests, your passions, your distinctive point of view. You are also not your societal roles, your bank account, or your stuff. You are simply, beautifully, miraculously you, the only you there will ever be for all time. It really is enough.

    2. Any chronic condition waxes and wanes. When we have good days, we can scarcely imagine what it was like to be so sick. Unfortunately, it tends to work in reverse, too-when we have bad days, we can't imagine feeling otherwise. Do yourself a favor. On a good day, write a letter to your future self, the one who's having a bad day. Describe in rich detail what a good day feels like. Remind yourself that good days--or at least not-so-crappy days-do come back around. Print it out and tape it or post it somewhere where you can easily find it, no matter how sick or stressed you may feel.

    3. There is really nothing in the world that is universally good or bad. Even the best thing in the world has a downside or two. And even the most terrible tragedy imaginable can contain a gift within it. How many good things have come out of your challenges? I guarantee you'll find more than one.

    4. Give people the benefit of the doubt. Operate from the assumption that they are doing the best they can with whatever they have to work with at the time. That guy at the mall who told you he wishes HE could ride the mobility scooter 'cause his feet hurt? He's just trying to connect with you-hey, at least he didn't pretend you weren't there. And about those people who pretend you're not there. They actually think they're helping you by not making you feel self-conscious.

    5. Listen to and honor your body's wisdom. It knows what you are capable of on any given day-and that has nothing to do with what's on your appointment calendar, or on your to-do list, or with anybody's expectations of what you "should" do (that includes your expectations, too). Your brain is smart enough to come up with all kinds of justifications for plunging ahead ("Everyone will be so disappointed if I don't show up," "No one can do this except me," "It's not so bad--I just have a small migraine.") Don't fall for it. Be still, be quiet, and listen very carefully to what your body has to say.

    6. Don't give up--but do consider giving in. Crucial distinction here. Giving up is abandoning all hope that anything will ever be any different. Giving in, however, is going with the flow. What would a bad day be like if you stopped fighting it and hating it, accepted it for what it is, and allowed things to unfold organically from there? Then pain is simply pain--not a punishment. Energy depletion is simply a cue to rest. A downturn is what it is, not a predictor of what is to come. Allow yourself to simply be, without expectation, without judgment, without fear.

    7. Change your focus. If things feel scary and/or overwhelming, tighten your focus and narrow it down, smaller and smaller, until you're at a scale you can handle. On a bad day, it's easy to let your mind go spiraling into what-if scenarios and doomsday predictions. But if you can focus on what is okay in each individual moment--the softness of your sheets, the warmth of the sunshine through the window, the tiny bit if ease that comes from taking a deliberate, slow breath--you then ARE okay. One moment at the time. Conversely, zooming out and looking at a bigger picture, outside yourself and your challenges, can be helpful, too. When I'm feeling awful, sometimes it helps to coach a client, play a game with my son, take whatever step I feel capable of to make a difference in the world. Play with changing your focus, back and forth. What feels better?

    8. Stay connected to the world in whatever way you can. When I was bedridden, technology was my lifeline, my means of connecting to the world. I kept in touch with friend, family, and even carried on with my coaching practice through Skype, email, Twitter, Facebook, and the phone. Frequently the people to whom I was talking had no idea I was flat on my back in bed. Illness and pain are isolating enough without you pulling up the drawbridge and hunkering down. Reach out in as many ways as you can imagine.

    9. Ask for what you need. No one--not even your closest loved ones--are mind readers. Sitting and seething because your spouse "ought" to know by now that you need a fresh glass of water every hour and not saying anything is as insane as going into a restaurant and expecting your dinner to magically appear without ordering. Note that asking for something doesn't mean you'll always get it. But not asking is pretty much a guarantee that you won't.

    10. Be gentle, patient, even tender with yourself. You know how. But it's funny that what comes easily with others--preparing a nourishing meal for them, or being patient with listening to their problems, or giving them time to rest--can be so hard to do for oneself. Ongoing pain and illness can lead to self-neglect and even self-loathing. Ask yourself: how would I treat a dear friend who was struggling? Guess what? That dear friend is you.

    http://www.facebook.com/lifeworkscoaching

    http://lifeworkscoaching.com
    anne_likes_red and Ocean like this.
  2. sianrecovery

    sianrecovery Senior Member

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    Manchester UK
    excellent stuff
  3. hurtingallthetimet

    hurtingallthetimet Senior Member

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    good advice...i have had very negative experiences with being ill..with these illness that are so unknown and invisible...i was shocked at how little sympathy people have for fibro/cfs...if people only knew how much pain and exhaustion that we stay in and how debilitating these illness are...ive overheard others laughing about the illness saying its in peoples heads...had doctors tell me its in peoples head and debate if its real or not...ive lost pretty much all friends...if anyone ask how i am that i run into i fake a smile and say "fine" and leave it at that because i know they really dont care how i am...

    i stay in house in much as possible...doctors have told me to exercie when i can..to do things i use to like like garage sales but its hard and always crash after any activity...i was told to do puzzles to help with memory did that awhile..actually tried too hard....thank God i could set up chair etc to get more comfortable to be on computer..thank God for tis support group and another ive been on for years...its very hard...i am angry at being ill..angry about everything ive lost..and ive lost alot..friends..social life...very ill with alot of things..gained a ton of weight from not being able to exercise and medications..lost being able to work..lost time with family such as going out and to movies...etc..etc..im sad about alot...

    you did give good advice and im sure it will help alot...
  4. u&iraok

    u&iraok Senior Member

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    I have people telling me all the time that they're tired. It used to annoy me--once three people in one day said they were tired and the third person broke the camel's back and I said (albiet nicely), "At least you're tired from doing a lot." She avoided me for a while.

    Then I realized people were trying to connect, they knew I understood what tiredness is.

    People don't know how to handle sickness and if I unloaded on them, it would overwhelm them. So I just listen to their problems and relate.
    ahimsa likes this.
  5. Gavman

    Gavman Senior Member

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    Sydney
    u&iraok,

    Its hard to relate with people whose form of tiredness is feeling a little achey when they live their lives and do everything they need to do and we're stuck doing 1/10th of that. I spend 16 hours in bed and dont have the energy to leave the house some days and someone tells me they're tired when they've been out shopping all day.
  6. u&iraok

    u&iraok Senior Member

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    I know. But they can't relate to us, not really, no matter how we explain, so I just give in and relate to them. They are tired so I acknowledge that from their point of view they are not feeling as good as they would like to. It's a matter of degree, okay, it's the difference between a puddle with a few amoeba and a deep lake that has a Loch Ness Monster, but it's real to them. And it'll just make you upset to dwell on it.

    Our society values stoicism and grinning and bearing it. So I do that and wait patiently for some evidence that I'm not well that they can see and understand like when I had a cold for 5 weeks and still have symptoms, like a cough bringing up mucus and sinus congestion at 6 weeks. Then you have some looking at you like you're a leper, eeeww, you're sickly, something's wrong with you, stay away, but your friends and the good people will be compassionate.

    And when it becomes a comparison game, I'm sicker than you, that causes people to feel like they can't get sympathy or compassion just because they're not the sickest one in the room and they resent that. So you have to acknowledge their pain.

    It'll never be perfect but the goal is to try to make the best of things and that list of ten suggestions is pretty helpful, I think. But I feel your pain!
  7. Gavman

    Gavman Senior Member

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    I think the important thing is to have both people feel valued in a relationship. You let everyone else crap on about their lives but feel like you arent allowed to?
    That will effect tiredness while your in the company of others. I'm not saying telling them your sicker, but just allowing you to express yourself too.
    I'm not sure if its a product of CFS or of a neglected childhood but we tend to tiptoe around others to make them feel ok, when we dont do what makes us feel ok enough.

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