Friday, April 16, 2010

fire storm or solar flare?

I am in a very, very long, intense flare, or as my sister (who has this nasty thing, too), says "firestorm" (much more accurate, don't you think? Or maybe even "solar flare").

I have been in so much pain for months. There have been no okay days. There have been no not too bad days. There have only been DAMN IT, I HURT days -- for months. I know it is stress. Way too much crap happening all at once. And, its been that way for way too long, too. One frickin' thing after another. Why does it go like this? Why is all of this happening to my family (I include my extended family, we make any soap opera look like Sesame Street)? Other families manage to have dry spells of misery-less-ness (I often make up words - the right ones won't come to me). Why the heck can't we just have one nice week of blissful rut-ness? You know--"I'm in a rut," people lament. They have no idea how lucky they are!

Along with the unending pain is an exhaustion I have never known before. It feels as though I have walked 500 miles. I feel so weak, I can barely raise an arm or a leg. It is all I can do to get from one side of the room to the other. And then I can hardly catch my breath. I know I am out of shape--okay there is absolutely NO shape, just a big, big blob of shuddering humanity -- but even at my worst before, I could breath. I am now developing a fear of suffocating, because sometimes I feel as though I am.

I genuinely feel sometimes like I am suffocating. But, there is also the feeling of suffocating under the weight of this chronic illness. I can't seem to make any positive moves toward accepting my life. Or, even figuring out how to live this life.

Michael J. Fox has been haunting me lately. That man is a marvel. I have been seeing him or hearing about him often the last few weeks. He was on "Rachael Ray". He is on the cover of Reader's Digest, "What My Illness Taught Me". Where does he find the strength, the positive outlook, the ability to keep going? He shames me. I am a sniveling coward and wimp. I haven't even gotten up the guts to read the article yet. He just smiles out at me from the cover. And I feel ashamed of myself. I should be able to do this. Other people do. Others go on with their jobs. They go on with their commitments. They go on with their life. Look at Michael. Smiling.

5 comments:

  1. CJ................GREAT BLOG!!!!!!!!!!!!! I love the quote at the bottom. How true that is. I will definitely follow you and your progress. This pain sucks.
    Huge hugs!

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  2. Sorry I didn't finish my thought....The pain intensity is amazing. All I do is type and cry and cry and type. I find things to think about or write about to distract me. I have had a couple of ok days but not many. Do you take pain medication and muscle relaxers?? If not........you need to take them! It does bring a little bit of normalcy. It kind of takes the edge off....

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  3. Hi CJ,
    RoseMary introduced me to your Blog and I sooo understand what you have to say. I have been right where you are!!! I have felt just like you have and believe me when I say...YOU WILL HAVE A FEW GOOD DAYS, ONE DAY!!!
    I too say Michael Fox on Rachael and thought the same thing you did but at the same time I also thought he doesn't deal with the relentless (sp) tiredness we do. Imagine if he had his disease and our fatique issues?? I always say I could deal with the pain better if I just had all my energy back. I too used to be wide open with my energy and personality and am now a complete 360 of myself.
    I have laid in bed for days and cried and wished for my life to end....asked God why??? I am still waiting for an answer but I am glad I am alive..(today)! I have a fantastic support groups and my husband has been my rock.
    OK so I go on about me just to ask you....what kind of support group do you have?? And to let you know that you know that you now have me and RoseMary for support!!!!

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  4. Hello Rose and Lynn-Marie! What a surprise to find your comments on my blog! A delightful surprise at that! I thought I would kinda stay under the radar while I felt out this new blog world -- but you found me. I have signed up for I don't even know how many different groups on line (mostly in reference to losing weight :<) and have only lasted a week or so on any of them. I was having fun setting up this blog site--picking a template, changing the template, picking colors, changing the colors etc--and thought well, I guess I could write something. Then I couldn't figure out how to get it online. I somehow did, but still don't know how I did it. Anyway, I was thinking it would just be a journal for me, but then I see that someone else is reading it! And, commenting about it! And, saying they will be my friend! Well, this "blogging" thing might not be so bad. It might be okay to say how I really feel, to say what I really think, and to still have people be okay with that. What a relief to not have to pretend, to not have to say I am fine when I really am not (CLEARLY!).

    So THANK YOU! for taking your time to talk to me. For taking your time to listen to me. For taking your time to HEAR me. THANK YOU!

    Later,
    me
    CJ, in time

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  5. No way were you going to fly under the radar. I just left a note for another neat lady and she's been a little down....her blog is the dogkisses one but she's going to be contacting you as well. There was something about what you said. It sounded like it would be a good fit between me, you, Michelle (dogkisses) and Lynn Marie. Even though we haven't met it sounds like in another life and time we all could have been friends. Under the radar???? No way!!!

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