Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Brilliant

Written by Katie. Posted in Ehlers-Danlos Awareness, POTS Awareness

Let me be clear.  I did NOT write the following.  This article is from the website: http://www.rheumatoidarthritisguy.com

I want to say thank you to the rheumatoid arthritis guy for writing this article, as I have learned, and am learning these things along the way.  I really, truly love all 10 of them, as I am easily able to identify with each one.

10 Things I’ve Learned From Living With Chronic Illness

1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.

2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.

3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.

4. And for those moments when it’s just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally…I’m just as disappointed, if not more, than you are.

5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)

6. Achieving acceptance is hard. (I used to think that doing so meant “giving up.”) Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.

7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine–sometimes even healthy–to feel angry and frustrated…but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.

8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)

9. While a positive attitude isn’t going to “cure” me of my illness, it’s certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom…but I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.

10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one..until I realize that everything is indeed okay.

Article taken from:  http://www.rheumatoidarthritisguy.com/2011/11/10-things-ive-learned-from-living-with-chronic-illness/

 

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Comments (4)

  • Aunt Laurie

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    I really resonate with that list. Thanks for posting it, Katie!

    I don’t think people realize how much pain I am in because I force myself to do things every day. Like today I cleaned the kitchen, swept and mopped the floors, cleaned the bathroom and vacuumed. I am paying for it now but I decided a long time ago that while I have fibromyalgia, I refuse to let fibromyalgia have me.

    I do need to learn to rest more but the problem with fibro is that sleep is difficult and even when I do sleep, I don’t get much deep, restorative sleep.

    Reply

    • Katie

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      Glad you could relate and you are hanging in there. We have to refuse to become victims. We have too much to live for…Thank God for family, huh? “I heard this yesterday and loved it: Too blessed to be stressed” Love ya. xo

      Reply

  • Uncle Steve

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    Hi Honey, it was fun getting together last nighjt! i wanted to commend you for taking the time to explain your progress and trials to my friends…actually, you may be surprised but Beth reads your blog regularly as she is a nurse, a college department head in the medical field and a caregiver…both you and your Mom were very brave to tell them all that both of you (and Brad of course) have been through in the past couple of years…it boggles my mind…but everyone is alive and kicking!!!!!!

    Love

    Uncle Steve

    Reply

    • Katie

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      Uncle Steve,

      I had a lot of fun too! I have learned that we all have a story… What is important is, despite our stories, we keep on keepin’ on. Love ya. (Thanks for dinner).

      ~katie

      Reply

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