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Can we have a pep rally?

Discussion in 'General Symptoms' started by Sallysblooms, Jun 15, 2010.

  1. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I am just feeling down about my Disautonomia today. I am usually upbeat, but not today. I have improved, but I keep reading here that there is not a lot of hope. I believe my body will keep trying to get better, but I just need a pep talk. Are there any good stories to tell?
     
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    YEAH! I hope you both continue to get better. Good story.
     
  3. glenp

    glenp "and this too shall pass"

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    "and this too shall pass" My doctor told me that I am doing good - its with everyone from here sharing what has helped them. This is the second year in a row that I have started to feel better in March - In November and December I actually thought I wasnt going to make it into the new year. I'm trying to enjoy my recliner!! I bought a different brand of compression socks last time - I don't think they are working as well as the previous brand. The little things can add up to help you live better until a cure
     
  4. Lelvina

    Lelvina ex-Bookworm

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    Good stories...

    I spent a while completely housebound, crawling to the bathroom, etc.

    As of this past week, I am able to leave the house for 2-4 hours a week, EVERY week :) For me, that's a great story.
     
  5. ixchelkali

    ixchelkali Senior Member

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    Thanks, SickofCFS, that really is a lift. And thanks to Sally for thinking of asking for it.

    BIFF, BAM, BAM. RAH, RAH, RAH! (I don't have a good story, but I thought I'd get into the spirit of the pep rally.)

    I think I know what you mean, Sally. I like the connections here on the forum, and the contact with others who "get it" about this disease, but sometimes the sheer weight of human suffering can make it hard to read the posts. Somehow, we need to keep up each other's spirits and offer little glimmers of hope.
     
  6. Sunday

    Sunday Senior Member

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    It is a great story.

    Mine isn't as dramatic, but last fall, I was in terrible almost-all-whiteout-all-the-time shape from a move. I, a confirmed bibliophile, a read-and-walk-to-school kid, couldn't read more than a page or two without my mind going all woozy. I was taking a horticulture class at our community college; I find it really helps to have something to concentrate on that isn't about being sick or having to make money or coping. It needs to be something that engages my attention enough so I don't think about the "sick" part of my life, yet I need to be able to do it.

    What that much brainfog did to me was to alert me to how much of my intuition I wasn't using. I still wish I'd been well enough to get more out of the class, and I missed a lot of classes because I just couldn't do it, but I did well gradewise, which must mean I got something. But the real thing I got out of that class was an incredible jolt or download of spirit as well as information.

    When I had a hard time learning how to use a microscope from the instruction page, I said to myself, "Let's just make friends with the microscope and see what happens." Once I was comfortable, the microscope itself taught me what to do. It was a revelation to me how much I could use my intuition to substitute for my intellect. Not entirely, but a lot. It's also helping me to really understand something that this culture doesn't get: how they can work together beautifully, instead of trying to muscle in on each other's turf, duke it out until there's a winner. Intellect and emotion working together help the world make sense in a lot of ways that weren't available to me before.

    This wasn't the good story I set out to tell, but it's interesting that it came out this way. Besides having a hard time reading (words would turn into other words), it was neurologically difficult for me to write longhand, and while computer keyboards were easier, still hard. While I still have difficulty in that department sometimes, I am much better on all these fronts due to Freddd's methylation protocol and acupuncture.

    I wind this up wondering how inspiring it would be to the outside observer, but I thought I'd never be able to do science or write or even read anything long and in-depth again, and that is turning out NOT to be true.
     
  7. dancer

    dancer Senior Member

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    Sunday, I've also been an avid reader since childhood and the cognitive loss has been rough on me.
    Yesterday I read a couple chapters in a novel!!!...a RARE glimmer of light.
    It dimmed again, but it was a treat while I was able.
    Rah rah siss boom bah!!!!

    AND in little five-minute increments, I'm making progress on teaching myself classical guitar. The music has been healing and fun, distracting me from pain, and I hope my weary brain neurons are coaxed into some new connections through focusing on fingering, patterns, rhythms, etc.

    Sallysblooms, thanks for starting this much-needed thread. I'm cheering for everybody!
     
  8. Mark

    Mark Acting CEO

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    OMG! Who told you that? I did mention recently that I'm not waiting on the NHS to come charging to my rescue...but there's always hope. There's masses of hope, whether it's XMRV, the resultant boost of attention and publicity bringing us more proper research in the near future, the endless possibilities of patient-led web-based research, the accelerating pace of technical progress bringing new possibilities in the coming years...and some people do claim to have just gone into remission for periods of years for no apparent reason, or apparently due to treatments that worked for them...

    I had forgotten all about hope until XMRV came along. But it reminded me that suddenly, out of the blue, one day, will come that answer, that breakthrough, that confirmation that XMRV really is it and there's masses we can now do to improve things - or if not that, then the next breakthrough.

    Hope is crucial, we all need something to look forward to. Make a plan to do something achievable and rewarding; in a week or two's time: plan to really treat yourself. And then enjoy looking forward to that for a week or two. It makes a massive difference to have hope....
     
  9. Resting

    Resting Senior Member

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    My story goes as follows: I was very sick. I couldn't bathe myself, feed myself and I did a combat crawl to the bathroom (until I got a wheelchair). I couldn't watch any TV, read, listen to music, or use a computer.

    However, I am now able to read some, albeit fiction. I am obviously able to use a computer now. I bathe myself, feed myself and can get out of the house close to once a week. To me there is much to be celebrated in that. I do not think further improvement is hopeless at all. Reading other's sad stories all of the time can bring a person down.

    So what I did to make sure I was not focused all of the time on my illness is I started a scrap book of "me."
    *********************************************************************************
    (warning: lengthy) :eek:

    As many of you with this illness know, sometimes it is really hard to maintain a sense of self-worth when you are so limited in what you can "DO." So I thought I would first assemble old photos, mementos, etc. of things I have done in the past. This will help me to know that in good health I am capable. It is only the debilitating illness that prevents me from accomplishing things.

    But I don't want it to stop there. Yes, this illness has taken so much away and prevents me from doing many things that I would like to be doing but life hasn't ended. As a result of this illness, I have learned what really matters in life. Each ounce of energy that I have is so precious so I don't want to spend it on insignificant things.

    For these reasons, the things that I add to the scrapbook post-illness are of a different nature but in some ways, are more meaningful, given all of the obstacles that I, like so many of you, have had to overcome to achieve them. They are simple things. Perhaps a card I sent to someone has helped them through a rough patch. I painted a tee shirt for my husband with a fishing theme on it for Christmas. It took me several months to paint what would normally have taken me a day or two. The gift pleased my husband and he knew how much it cost me so it meant even more. These are conquests that help me see the value to my life.

    The other kinds of things I plan on putting in my scrapbook are accomplishments of a different kind. I try whenever I can to write down: all of the times that I have heard the, "it's all in your head" or felt the searing look of doubt in someone's eyes, and the "well couldn't you at least cook hot dogs for diner, they're not that hard," moments. :Retro mad:

    The times when I wanted to yell at someone who thought my illness was not real but I DIDN'T, the doctors who said I didn't fit into a box so my illness must be due to stress, but I DIDN'T scream, "YOU QUACK!" :innocent1: And when my clueless mother-in-law (yes, I love her but we don't only just love "smart" people,do we? ;) ) suggested that I could try to make hot dogs because they are simple...I refrained from saying, "First of all, hot dogs are the last thing I would eat if I were able to cook, and second of all, IF I COULD COOK I WOULD, BECAUSE UNLIKE YOU, I LOVE TO COOK. So if I am not, THERE IS A GOOD REASON!" Those have been some of the toughest feats in my life (aside from dealing with the debilitating illness itself).

    There are other things that still happen post-illness that are worthy of adding to the scrapbook. A special gift, kindness displayed from a friend, anyone's support or encouragement, a medical professional with a clue (yes, quite rare but they exist) who has provided some kind of relief. If we stop and think about it there are more things that bring value to our life than one would realize. We just have to look harder for them because they are most often found in the simple everyday things that most people take for granted.

    This may not be for everyone but I know it has helped me. THERE IS ALWAYS HOPE! :victory:
     
  10. dancer

    dancer Senior Member

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    Oh, REsting,
    what a beautiful scrapbook and idea....
    especially celebrating how we respond with love, compassion and forgiveness when we're oh so tempted to scream instead. :)
    Recently I listened sympathetically to a friend who had a cold when they commented how bad they felt.
    I confess a little part of me wanted to say, "you have no idea of what pain and exhaustion and illness day after day year after year feels like".... but I don't want my "normal" friends to feel like they don't dare share their struggles with me or that I'll judge my situation as more compassion-worthy than there's. I was able to muster compassion for them.
    I'm giving myself a shiny gold star in my mental scrapbook. :)
     
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Mark, it just seems I have not seen real hope for Disautonomia. I have done SO much reading here and online. I take the best supplements with two wonderful doctors. I am in a program that has helped a lot. I just really want to get better SOON. I have a wonderful home , an angel for a hubby and great family and pets. I just long to walk, have my life back. I have been sick 18 years with CFS, now with the POTS/Disautonomia it is just getting on my nerves, ha. Everyday is Groundhog Day. My hubby just called to check on me as usual. He said "It's Mr. Groundhog, checking on you." ha. We try to stay upbeat.

    With the XMRV talk. Why would that be helpful? I have old and new Epstein Barr. Knowing about that is not been helpful for a cure. I just take many supplements to get it under control. Medications can't get rid of viruses that bad. If you try, relapses usually happen.

    Resting, I celebrate myself with my home, pets and flowers. I have to keep my inner self ALIVE! I do take tons of photos and love it. I display them in a new gorgeous cabinet I love.

    I really do have hope, but some days it is harder than others. Frustration comes as you all know.


    [​IMG]
     
  12. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I looked that up. It sounds a lot like my Proboost Thymic A and Maitake mushroom drops as far as building immunity etc. I googled and it doesn't sound all positive, but I will ask my doctor about it. I go see her soon.
     

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