Sunday, March 14, 2010


My appetite has nearly completely disappeared: gone the way of my ability to speak proper sentences and feel full-time happiness. Today all I had was an All Bran bar, some almonds and two glasses of milk. I didn't have a proper meal Friday either. I'm just waiting for my clothes to start falling off me. Good thing I haven't thrown away my size 0 pants.

Crazy Heart comes out to play sometimes when I eat, as do Nausea, abdominal pain and Sadness. I get confused sometimes when I try to understand to what people say to me or when I try to express myself. This is Auditory Processing Disorder joining the fun. It's really playing up these days. Wtf is wrong with me?

I can't blame everything on my illness. These symptoms result from pre-existing, likely permanent, conditions. The symptoms keep going on and I'm a fool to think they won't continue to. It just seems so pointless: taking heart medications, resting, staying off my feet, following psychologist advice to repeat things and have others repeat until I understand. The list goes on, but none of these things seem to help. And these symptoms, some for which no medical explanation or treatment have been found, are caused by unrelated conditions. Bad luck? Maybe.

I couldn't even fully enjoy my 9-month delayed birthday lunch on Friday because food made me feel sick and I was having trouble understanding what my friends were saying -- trouble understanding what I was saying! Then my legs got all weak and achey after I dared to walk for a while.

Sometimes I think Screw this. Screw trying. Nothing helps. I don't know what to do with myself. It's becoming very difficult to bear, especially with the promise that most of this will last for the rest of my life. A daunting sentence. How could I have possibly avoided becoming jaded? My body and mind punish me for going out and living my life. Taking time off to rest didn't make me happy; school hasn't made me happy. What will? I don't know what to do. There's no distraction.

I write little funny posts in here, perhaps creating the illusion that I'm happy or at least dealing with everything okay. Really, I cry at least twice at week. This is so hard.


  1. Ashley, I understand what you are going through as I have been some time in terrible pain, but it passed. Yesterday I was reading a blog which I read once in a while but don’t comment in. There was a post called Zen of Pain, on Zen meditation saying that it decreases pain. They were mentioning an article which came from Montreal “Montreal, Canada -- ZEN meditation helps lower sensitivity to pain by thickening a part of the brain that regulates emotion and painful sensations, according to a study published recently. University of Montreal researchers compared the grey matter thickness of 17 Zen meditators and 18 non-meditators and found evidence that practicing the centuries-old discipline can reinforce a central part of the brain called the anterior cingulate. "Through training, Zen meditators appear to thicken certain areas of their cortex and this appears to underlie their lower sensitivity to pain," lead author Joshua Grant said in a statement.” If you would like to read the article on that blog, here is the link: Maybe something for you to try as it could not hurt. When I was expecting my first child I studied the Lamaze technique, which was a way of breathing rapidly to diffuse the pain. It worked most of the time. Now if I am in pain (I have a crack in my knee that was never fixed) I meditate and do the breathing, and usually it works. I hope that with spring coming up you will feel better.

  2. Vagabonde, thanks for your suggestion. It's really nice to know that someone I barely know wants to help me feel better.

  3. Can I be frustrated with your doctors on your behalf?

    I think they need to be paying more attention to the fact that your symptoms are getting worse, and trying to come up with new ways to help improve your quality of life.

    Take care, and my thoughts are with you.

  4. Today was such a good day! I felt really happy all the way through. I must stress that my symptoms aren't getting worse, but they certainly aren't going away either.

    I appreciate your frustration with my doctors, Linda! I haven't really gone for additional testing, though, perhaps because I haven't really asked for it. My doctors are cool and if I really wanted a CT scan or a colonoscopy or something, they would probably give it to me. I just don't ask because I'm sick of begging for tests that don't end up revealing anything.

  5. Hey there Ashley, you'd be surprised how many people there are who would want you to feel better.
    When science fails, meditation surely can do no harm; sounds like something worth looking into.
    At the very least perhaps it may help you find some peace of mind.

    Not being able to form coherent sentences can be terribly frustrating - I had a similar problem from being on some nasty medication for a while, nothing like your own situation but it left me frustrated and bewildered and that only contributed to what you describe so well here: the inability to feel full-time happiness. For very different reasons, I know that feeling well. You need to bear in mind that you are dealing with a LOT, with your illness and sometimes you need to cut yourself some slack. It would surprise me if you did not feel down sometimes.

    WE don't expect you to be happy & bouncy here all the time. This is your safe place, where you can share your fears as well as your hopes. I believe you will find support for both here.
    You'd be surprised at how much 'strangers' care.

  6. Terri, that's so nice. Thank you. You are absolutely right: I am way too hard on myself. I apologized to my friend for being distant on our Friday date and she said it wasn't necessary, that I shouldn't apologize for feeling things.

    My biggest problem is that I get angry with myself for not bucking up, failing to realize that I've been bucking up this whole time. So when I sense I haven't enjoyed something fully, I feel that I've let my issues control my life and dictate the decisions I make, thoughts I have, feelings I have.

    Then beautiful people like you make me realize that I haven't "let it control my life." I'm strong and I'm listening to my body, doing what I feel is best, while socializing and going to school. These experiences should make me realize my strengths mentally and physically, that I can do so much while going through so much.

    I don't even think I should feel guilty if I had chosen to delay my enrollment in school until, say, September, and instead taken this time to rest. I probably need it and I have the support of my family.

    Then I have amazing feel-good days like today, where I can do anything I want and it reminds me of how useless I felt when I wasn't doing anything on the good days in the first 7 months of this illness -- hey, I felt lonely and bored no matter what kind of symptom day or period I was having.

    I need to stop thinking that I'm imagining my symptoms, making excuses and letting people down. I can live a full life with this, but I need to accept that I will have to modify it for the sake of my health and quality of life.

  7. You are a remarkable young woman, Ashley. I'm glad you had such a good day :-)

  8. Thanks Terri! That's such a nice thing to say! Today was another happy day!

  9. Ashley,
    I have no idea how I stumbled across your blog or why I clicked on the RSS link. It’s not at all the kind of thing I would be looking for or normally read. But for some reason I’ve been reading a few your old posts.

    I must say the way you write and express yourself is so genuine and unique, I don’t think anyone could read more than a few of your posts without developing some empathy with you. I was wondering if you have written any fiction? If you have I would love to read it, I get the feeling you could put great depth into your characters.

    I haven’t read enough to know what disease you have or even remotely understand what you are going through. I have no great words of wisdom for you. Although, I can second the recommendation of a prior commenter to meditate - a recommendation I would make to any human. Buddhist Vipassana style meditation, and Buddhist philosophy in general I have found helpful in my own life. But of course we each must clear own path.

    So what am I trying to say and why am I taking the time to write this? Well, I’m not entirely sure. I just felt a connection with you and I thought I should tell you so.


  10. Hey Robin, thanks so much for your honesty. It means a lot that my writing connects me to you. Audience is important to me and touching and connecting to an audience, especially an audience that "stumbled" upon me, means the world to me.

    I love to write. It's very cathartic, but it also nurtures my introspection: it helps me think! I'm so glad my writing voice is distinct and honest. That's what I wanted.

    I have dabbled with fiction off and on for my whole life. I put a short story up here titled "The Distinguished Standard Poodle Gait." I don't have anything else really that I've completed! I get frustrated with fiction and tend to give up on it, but I really do enjoy it. Thanks so much for your encouragement!

    Thanks so much for visiting me! Most commenters on here are people whose blogs I found and commented on, or friends. But YOU found ME! That excites me. My heart beats a little faster when I see a new name in comment moderation box.

    You're essentially a stranger, yet you're concerned for my well being. I think that's beautiful.

    I hope you visit again!

    I've checked out your blog, but will take a closer look soon.

  11. Ashley,
    I just read your Poodle story - seriously - you are a good writer! I hope you keep writing.

    Isn't it odd how the internet allows people to have such touching yet fleeting connections? This is certainly something new in the evolution of the human race. I can't help but wonder how it is changing us, maybe helping us to see more clearly what an ephemeral thing we ourselves are. OK, maybe that's too serious!

    I'm going to add you to my blog roll - even though your blog has absolutely nothing in common with mine. You never know, I find people are often much more multifaceted than we give them credit for.


  12. Robin,

    Yes the connectivity of the internet, blogs specifically, allows voices to be heard that may otherwise be silent because of a lack of means to communicate. Anyone -- even non-professional writers -- can get exposure. I think it's wonderful. I'm so glad to be a part of this community!

    Thanks for your comment on "The Distinguished Standard Poodle Gait"! I had a lot of fun writing it. I'm sure soon enough I'll write more fiction and put it up here.

    And thanks for adding me to your blogroll! My own blogroll is pretty diverse: blogs about illness, postcards, dogs, travel, science, etc. It's nice to come on here and have a variety of things to read. I LOVE personal stories. It's so awesome to read about experiences people have in their everyday lives.