I get knocked down, but I get up again
I received an email from a lovely comment friend. She thanked me for being honest and for sharing the trials of living with chronic pain. She also suffers daily, but has not been given a diagnosis, as all tests so far have been negative. That is a very frustrating place to be in and it can get quite lonely. Hearing from her was a huge blessing for me, as well as hearing from others. It feels good to be able to share my own experiences and I thank you all...you make my day :)
I recently hit a new wall and for some reason, it always catches me off guard. All I can do is try to explain and I am open to interpretations. July has been a weird month...3 good days, 4 bad ones, 2 good ones, 3 bad days, 1 good, 4 bad and so on. None of them are pain free, but free enough to get about and enjoy an excursion or lite activity, now and then. However, I find myself often frazzled and out of my element, which is different than the anxiety I sometimes feel. After a long talk with J, I realized that sick days are much more predictable than the good ones. If I wake up sick, I can tell you exactly how my day will play out, minute by minute, but on a better day, I am allowed the luxury of choice and because those days are so few, there is this momentum of pressure in what I decide to do with my day and the fear that I may not choose efficiently. Meaning, at the end of the day I wish that I had done some cleaning with my extra energy, or left the house and gone out. Guilt plays a part in these heady discussions.
I'm sounding a little crazy and neurotic, but that is what happens to people whose days are delegated by a body that doesn't want to cooperate with a mind. I feel like two different people, the person that controls my mind and the person that wears my body. More on this subject another day.
I will say this though...If we wore our bodies like clothes, this body would be in that coat closet that rarely gets used, shoved to the back and hidden by all the party dresses ;)
posted by Darlene at
8:52 AM
10 Comments:
I love this photo of you!
Thanks to you for sharing your experiences! Whether you´re having a good or a bad day, you keep on inspiring me.
Sending you lots of love and a big hug!
xx Silvia
And one day we won't have to worry about the body. Thank heavens! Until then, what a trial! You do a wonderful job explaining living with a chronic illness, I think. Who better than someone who has to live through it. I can appreciate, but I can understand in the way you might wish! Sorry.
You are such an inspiration to me. I can't believe all that you go through and how strong you are. I complain about things, but then I read your blog and realize how ungrateful I am. Thank you for your honesty and for setting an example of how someone can be so beautiful not only on the outside, but the inside as well.
Darlene - you are an amazing woman and after I read your post, I know that my aches and pains can't compare to what you must feel like so much. I have to say that you are able to articulate your feelings so well. I'm sending big hugs your way and hoping that God will place his hands on you and give you many pain-free days, months and years ahead. And that you will continually bounce back with more great posts. And please, don't worry about cleaning.....it will still be there after all is said and done.....unless someone wants to do it for you!
my gorgeous sister
my strength
my hero.
i love you and learn from you each day.
warm snuggles
and sister butt squeezes.
xoxo
Dear Darlene,
I will not pretend to know how it is to live with Lupus. I can only share my experiences with CFS. I liken my energy levels to a bank and when I overdraw my account, then I must sleep. I have slept as long as sixteen hours and thirty-eight out of forty many times this year. Stress, heat and lack of food all will cause an episode of crushing fatigue.
I too do nothing many times when there are things I must do. But I can't fight it, if I do, then it will be that much longer before I recover. The strange thing is, Rose does not have CFS.
Take care of yourself and do things in moderation.
Look at you, ya Beautiful girl!
You are so loved! Keep the faith and just take it one day at a time (cliched but so true).
You are so inspiring.
I have the fear of choosing wrongly on a good day. I also cannot forgive myself very easily on the bad days when I cannot get done what has to be done.
It's a living hell sometimes, and I am so grateful that you share, as it means a lot of us who would otherwise be so isolated as we feel a sense of relief when reading your words.
Thank you again, Special one.
As always sweetness you inspire.
I would never have you in the winter closet, Your like a fine crochet rug that always adds comfort no matter what the season.
In my opinion there shouldn't be rules about what defines "making the most of a good day." Maybe not thinking about it so much that it dominates your action/inaction is making the most of it! (But I totally do the same thing you do; do as I say, not as I do, haha...)
"If we wore our bodies like clothes..."
Very interesting thought. I would gladly chip in to buy you a wonderful pain free body for the part of the closet you'd enjoy using.
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