Monday, April 21, 2014

Am I really Chronically Ill?

These two words are really hard for me to comprehend ~ Chronically Ill. I can do the ill part. Get some rest, suck it up for a few days and get on with life. After more than a year of day-in and day-out funk, I am having to come to terms with the fact that this is how life is. Chronic. Chronically messed up. Sounds better than chronically ill.

My stubbornness is a blessing and a curse. What good is it doing me to not give in and just do the best I can when I can. My warped thinking is that no matter what I do, I am going to feel "messed up" anyway. Might as well just pay for it later and get through now. Is this a good idea? Absolutely not and well maybe.

I think the key is finding balance. On one side ~ Letting go of enough stubborn to come to terms with the fact that I am not in control of how my body operates day to day and getting it through my thick skull that I am not going to miraculously wake up cured tomorrow. The other ~ Keeping enough stubborn to make it through each day without letting illness control my emotions.

I am not the curl up in bed and let the world go by kind of person. Before the onslaught of neurological issues set in, I was never idle. I was Full On Go even in spite of my pain. Pain is something I have become so used to after all of these years that I suck it up and push through it. Not real smart, I know, but it works. I deal better with the pain than the side effects of pain meds so it has always been ibuprofen or nothing for me.

I remind myself of the elderly people I use to care for in my nursing days. Ask them if they have pain and almost always the answer was no. I would then probe about their arthritis or any other chronic pain source and they would say oh yeah that hurts but that always does so that doesn't count. If it was not a new acute pain it had become normal and therefore did not count. Wrong! I wish I could take the advice I have given to an endless number of patients in my day. They say nurses make awful patients and I have to agree.

So even after all of these years, I have never allowed myself to take on the label of chronic pain sufferer. I am going to be honest here and say that it feels like I am a weak sissy girl if I were to wear that label. I would never ever think of others that same way, but for me personally I feel like I have some super hero image to live up to (only to myself of course). Trust me, I am no super anything and have never been. It is just some ridiculous sense of failure to my type A personality. It is even more ridiculous that it is part of my defunct collagen producing DNA and absolutely nothing I have control over. Nope I don't have control issues. (insert mega sarcasm)

Pain aside, I am a sweepstakes winner of the daily thrashings of dysautonomia. This is one tough hombre. It is a beating and kicking you while you are down, licking your wounds for a lifetime kind of illness. I wish I would have never met the likes of it. It is so busy kicking my butt in about 65 different ways at one time, I can't even keep track of everything that is happening at one time.

This is the one that is wearing me down. I am not winning this fight- At All! Oh, I may have moments and I mean moments, not hours or days, that I think I may have this thing slightly figured out and then WHAM!  Left hook out of nowhere. It is unrelenting and seemingly has no boundary it won't cross. Chronic!

There are many possible reasons to develop dysautonomia (the POTS variety for me) and many of the cases will resolve on their own after time. I am not one of those cases unfortunately. With my hyper POTS being caused presumably by my EDS it may only get worse. If only I didn't have a double dose of sorry we don't have a cure, but we can maybe kinda somewhat manage your symptoms as they progress. But I do.

So am I really chronically ill? Yep, I finally think so. Why does that seem like the hardest of all of my pills to swallow?

1 comment:

  1. Yes life with POTS in an never ending game of not knowing what curve ball is coming next, when, how hard etc. it is hard to find balance in learning your new constantly changing normal.

    I am so glad for bloggers like you. I cannot imagine dealing with such a new rare illness without the Internet community of dysautonomia bloggers. Even a greater blessing is knowing and being encouraged by those who share there faith journey in the midst of POTS.




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