I always thought of blogs as being narcissistic, business related, or as my sister's, a way of keeping in touch or memorializing.

But, by necessity, I am learning a lot about myself. I find I need to get my thoughts out, and it helps me to know that someone else will read them. So I have created this little space for myself, to express the things I have trouble saying (be it emotional or physical trouble), to share what I'm going through, and what I'm learning through it.

I absolutely welcome comments. It's nice to know how people relate to what I'm saying.
To send me a private message, please e-mail me: flylittlewordsfly@gmail.com
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Friday, 10 February 2012

I'm still here

It's been longer than usual between posts, mostly because of two factors: I still feel really crappy, although my emotional outlook is improving; although I now have a tablet (thanks to my brother in law who had an extra that he kindly donated to the cause of preserving my sanity) that allows me to actually get online at my parents' house without dragging myself up the stairs and sitting up at a desk, typing on a tablet keyboard is un-fun enough to stop me from writing. So now that I am home for one night (avoiding the cleaning lady who is going to arrive at my parents' house nice and early in the morning), I find myself yearning to post. About something. Anything. So... hi! Welcome back!

My physical reality has not shifted much since I last wrote unfortunately. I am having some moments of better energy, and of lessening of symptoms, but for the most part, I'm still really struggling with daily life. So welcome to my little pity party: My right foot is dragging again, quite a lot. I think it's a neurological thing. I'm shuffling, and I walk about as fast as my grandmother (who is turning 92 tomorrow - no - today! Amazing, eh?!). I get very lightheaded when I stand up at anything more than a turtle's pace. My head is all spinny, and my appetite is up and down. Walking to and from the kitchen has my heart racing. Climbing the stairs is a real ordeal. Sitting up for dinner makes me want to lie down again, and most of the time I am lounging, reclining or lying down. And that's only part of it.

And, as you know if you read the last post, there seems to be little hope for any change any time soon. It's like I traveled back in time to this time last year, and all my progress has been erased. I know, I know it hasn't, but I'm really making an effort to recognize and acknowledge my emotional reactions, and that's what they are like right now. I am feeling all kinds of uncomfortable and unhappy things.

But here's the cool part. Every time I realize I'm feeling something unhappy, I can change my inner voice, and validate the feeling instead of pushing it away or stuffing it down, and then once it's validated, it's quite content to go on its un-merry way. So that's where I'm at right now. Trying to recognize and change my thoughts by being aware of my emotional state, while at the same time being compassionate enough to not force it when it's too uncomfortable.

I'm not entirely ok, but that's ok. I'm in a funk, but I'm enjoying my pity party. I've been wallowing and indulging in a great deal of escapism. And now, I am slowly but surely allowing myself to experience a little bit more every day, and that helps. The most painful part, the part I'm not ready to really look at yet, even though I know it's there, is that there's a part of me that is engaging in serious self-blame.

There's a part of me - I feel like there's something I missed, or did, or didn't do that would have prevented this relapse from being this serious. That I am somehow to blame for this once-again sudden and steep decline. The rest of me knows this isn't true, but it's so hard, because there are no clear indicators, no clear physical causes, and so many theories of illness.

And even though none of my doctors blame me, or have ever given me a reason to think I am responsible for my condition, there is still this niggling thing, and this message I am receiving that they're not trying to send (I'm pretty sure they're not, anyway). The only thing that can help me, according to the doctors is changing my lifestyle - taking my supplements, eating better, walking, pacing myself. So it's all on me. And the message that I am receiving, is that if it doesn't work, it's because I didn't do it right. That's a sucky way to feel. I'm trying to reprogram my brain on this one, but for now, it's just sucky.

Someone told me recently that they'd rather have Cancer than ME, because at least, even though you are facing a life-threatening illness, you know what you're dealing with. I'm not entirely sure I agree, but I sure get it. The uncertainty, and unpredictability of this is really really hard to live with.

I'm trying to think of a positive way to end this. I really am. The best I can do is think that this is another one of those experiences that when I come out of it, I will come out stronger and better for it.

A friend posted this on Facebook today, and it really reflects what I'm feeling... so have a laugh, because that's what I'm doing :)  I promise.


  1. There is a famous statue in Mexico by Jesus Garcia, entitled "In Spite Of". The sculptor lost his right hand in the midst of his work on the statue. He determined that he would finish it. He learned how to carve with his left hand and finished it- and better, perhaps,than he would have done with his right hand. For a quality of life had gone into the statue. So they called the statue "In Spite Of".
    ~~~E. Stanley Jones~~~

    With all my love. XOXOXO

  2. Andy, you know that our bodies react and get sick just because and it is SO not your fault. I totally get why you would be having a "pity party" right now....you've lost more of your independence and have to rely on your parents. NOT fun.....I am in exactly the same situation with my mom and feel guilty and horrible about having to rely on her so much but honestly in no place to change it.

    You have achieved so many goals and made so many important cognitive changes which is no small feat when you feel crappy. Again....I know. I try not to be a "victim" to my body and illnesses and it's tough. Sometimes we are but most of the time we are amazing examples of strength and fortitude. And I wouldn't be the same without you!!! I just told my husband that yesterday :-). Love you!

  3. Thank-you my loves for the support and ultra positive vibes!

  4. I'm so glad you have this place to express yourself. You can't blame yourself for getting sick or not getting better. Brighter minds than us still admit they don't even know what causes these diseases. You do what you can and wallow when you have to. You haven't regressed, you have progressed. Because you are addressing the emotional part of being chronically ill. Which if you are like me (and I have a sneaking suspicion on this one) is the hardest part. Being gentle on yourself emotionally means that you are giving more energy to your body to help it heal. Sending you love!