Friday, February 3, 2012

Management of symptoms = Quantity of life

Have you ever tried to stop yourself from coughing? It's really difficult. As a symptom, a cough is very urgent, very demanding, very insistent. You're going to cough eventually. It's just a matter of when. Try not to cough for too long and the gag reflex will kick in. Then it's vomiting and coughing. The body will have it's way. Why do I bring this up? Because I want to remind the people who don't have a chronic illness that you *do* know a taste of what it's like to walk in our shoes.

Imagine those symptoms dragging on... and on... and on... Like that lingering cough after a chest cold that just won't go away. Only instead of just the cough, it's the whole cold dragging on. No amount of willpower will make the symptoms go away. Try to force them back and they push back even harder than before. Get burned often enough and eventually, you learn. Something are just-out-of-bounds now. Oh you may be able to indulge every once in a little while, push past the safety zone a bit. But the costs are high, and that's a reminder that your limits are still there. You count your lucky stars for the things that you still can do.

In a situation like that, it's natural to get frustrated. It's natural to become impatient. It's natural to be fed up. It's natural to want to turn our face to the sky and ask, "Why me?!" It's natural to be frightened of what the future holds. I don't have a feeling of safety in my own body. There's always the thought that things are going to change, and not for better. It's happened before, it can happen again. Flares erupt. Bad days are bed days. It's natural to feel at the mercy of invisible, mysterious forces.

It's natural to not want to be alone. I don't trust my body to function. I don't trust my ability to take care of myself. Why? Because I have had things happen to me that were bad enough that I vowed, "Never again." I've been too close to the edge---where if I hadn't've been lucky, I could easily have been dead. It's just safer having someone else around in case of emergencies. In those times another person is a lifeline. In quiet times, at the very least they brings peace of mind.

But what I dream of, when I dare to dream, is a world in which I can manage my symptoms in private and just get on with my life. After that, all other things would be possible: a self-supporting income, expressing myself artistically, participating in life again. A world where I can take care of myself and regain my adult dignity. A world in which I can build towards my future. A world where I can contribute more than just words to my brothers and sisters out there. They're good words, but I know I'm capable of more. This isn't just a world where I have a better quality of life. I'm talking about a world where I have more hours of the day where I am useful---a greater quantity of life.


  1. Exactly how I've been feeling, especially the last paragraph. Great post!

  2. Oh, I'm so glad it resonated with you.

    Yeah, I don't need greater quantity of life in order to live longer. If I could just take advantage of the time I have, that would be a substantial gain!

    Hmmm... that gives me an idea.

  3. I understand exactly what you mean and how you feel. I too long to be more useful because being useful, getting stuff done feels good doesn't it? However, I have to keep telling myself that I am still useful. I can listen to family and friends, share their joys and sorrows. I can pray for them, I can pray with them. I can worship God. I can laugh and I can cry. Yes, like you, I would like to be more useful, feel more valuable, but I keep reminding myself that I still have value, great value, to my family, and to God himself. So do you!
    I enjoy your blog so much. Love the title. Hats off to you for trying to make something so difficult look awesome. Don't give up!
    I'm praying for you....

  4. You hit the nail on the head/ A sense of accomplishment is one of the best self-esteem building tools I know.

    I know I'm useful somewhat... but I used to be so much *more* useful. I'm not longing for my 28yo body. I'll never have that again. But I know that I could do SO much more with just a little help. I already have some treatment plans in the works. Next week I start botox and physical therapy....

    I just see how much time I sit on the computer playing Facebook games, bored out of my *skull*, knowing that I could do so much more with my time if I just had the physical capacity to do so... Looking at the piles of unfinished chores and having to remind myself that if circumstances were normal, I wouldn't be living like a slob... And the thing is I'm not asking to exceed any normal capabilities. I'm not even asking to measure up to folks my age. *That's* not even possible with my nerve damage.

    I don't want to feel like I'm just wasting time. It's one thing to want to relax and take some time out. It's quite another to be stuck in time out! lol

    Thank you for all your kind words. These comments mean a lot to me. Whenever I'm able to help someone else, that means my illness, struggle, and pain wasn't in vain. All y'all remind me that I'm not alone. Though we each suffer individually, we share the human experience of suffering in very similar ways. The facts may be different but the feelings are the same. It was all of you who inspired me to do this work. So, thank you.

    I'll be honest, my brain may take me to a place where I do give up someday. If that ever happens, I would hope for people to understand that I just hit my limit. Yes, it's a permanent solution. Yes, the miracle may be 5 minutes away. But there are certain things I will not live through. They better be end of life issues, however. I would like to hold myself to that standard (but that's just me). :)

  5. For me I have been looking for quality of life. I want a life free of pain, free of ra for even a few moments a day, and free of the burden of chronic illness. I do take what I can get and even if this doesn't exactly measure up to the quality I am looking you I push on. I truly can see where you are coming from with this particular blog post. Sometimes I just wish we could have it normal...even for just awhile.