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.