Words From a POTSie- Pt. 2

Thursday, December 19, 2013

"A healer is someone who seeks to be the light that she wishes she had in her darkest moments." -Vironika Tugaleva

I was diagnosed with POTS. It's not something I'd ever heard of until a few months ago, and unless you have or know someone with POTS, you probably don't know too much about it, either. So here's something you should know- being sick is hard. It's hard on your body and on your heart. And it often feels like you're the only one in the world who feels this way, since you're often the only one in your world who feels this way.

Because of how rarely diagnosed POTS is, a lot of POTS patients get most of their information and encouragement from blog posts and online resources. I know that I have several POTS related blogs I like to follow. I'm not sure whether or not anyone with POTS will ever see this or not, but it applies to pretty much any chronic illness.

Here is my list of 

Ten Tips to (and from!) a Spoonie

1. None of this is your fault. Unlike some illnesses, nothing you did or didn't do caused you to be like this. There wasn't anything you could have done to prevent this. It just is. Do not blame yourself for your illness.

2. Remember that your illness is small... This isn't all there is to life, although many times it many feel like it. This is just a small thing in the big picture. Things may not ever miraculously be fixed, but it won't always be this bad. There will be good days, too.

3. ...but it is also very big. The impact this has on you isn't small. It may not be terminal cancer, and it may not be life-threatening, but that doesn't make it any less important. It is a big part of your life, and likely will be for a while. 

4. Don't try to do this alone. You need people in your life to help you get through this. You need people to remind you when you forget to take your medicine. You need people to explain what's happening when you just can't figure it out. And sometimes, you just need someone to sit and watch a movie with you when you feel like you can't do anything else. Find someone.

5. Don't be afraid of being vulnerable. There is nothing wrong with opening up to someone about your life. It's such a relief sometimes to just talk to someone. No pretenses, no mask, no "I'm fine" when you're really not. Sometimes you just need to tell someone how much you're hurting. Do it.

6. You don't always have to be strong. You won't always be alright. And that's alright. It's OK to not have it all figured out. It's OK to be "not so great." There are just days like that.

7. Don't forget to live. Sometimes your illness may seem to just take over your life. With medications, doctor's visits, and new home remedies to try, it's very easy to forget that there's a life out there that doesn't have to revolve around your illness. You may not be able to just toss your illness to the side whenever you please, but make sure you don't let it rule you. Get lost in a book. Watch a great movie. Write a journal (or blog) entry that doesn't mention your illness.

8. Remember the good 'ole days. Don't forget about what your life was like before your illness. It may be tempting to think about it as little as possible because it makes you remember all that you don't have anymore, but sometimes you really need to remember that there was a time before all of this started.

9. It's OK. Remember that no matter how big your illness may get, your God is bigger. And because of this, you can look your illness in the face... and laugh. Just laugh. Because it has already been defeated for you. Everything will be OK.

10. You are not alone. No matter how lonely it may feel in the world of chronic illness, you're not the only one. There are people who truly understand, and there are people who may never understand, but they'll still stick with you through it all. Through every bad day and every new medication. You are not alone.

So there you have it. Ten Tips to (and from!) a Spoonie. If you don't understand the reference there, please Google "The Spoon Theory". It's probably going to be at the top of your search engine.

Be sure to pass this along to any "Spoonies" you may know.

You Might Also Like