What Chronic illness has taught me.

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Trying to see the good in every situation is hard. It is not something that comes easy to me.

I am trying to change that. To find a happy medium between Eeyore/Piglet and Tigger/Pooh.

I have been thinking a lot lately about what I can and can’t do. I have been thinking about how much I have changed.

Some things I have learned along the way……these are not in order of importance. They are all important.

1. Its okay not to  be okay.

We so often don’t feel well we almost get to the point we feel guilty about it. Or like me you DO feel guilty about it. I am sorry I don’t feel good. I am sorry I am not up to that.  STOP IT. Its a chronic illness. It’s not going away. Start NOW telling people. I am sorry I can’t do that could we do this instead? Chronic illness often brings depression. Because our illness is not going away, depression is always a threat. People either need to understand that or leave. It sounds harsh but it is what it is. 

2.  Self care is really important.

We are the Mom’s. We are the wife. We are the homemaker. We are constantly worrying about someone else. You can NOT take care of everyone else if you are not taking care of yourself. Take time to center yourself daily. DAILY. Schedule it if you have to! It’s that important. Taking time for you can feel like something you should feel guilty for. DON’T. Without it you will crash and burn. Trust me I know.  I have crashed and burned , I have had nothing left to give to take care of others.

3. Let go of guilt. Change it now and move on.

Once you realize that something is wrong. Let the guilt part go. Let it go. Now you know and you can change it. DO it. Change it.  The hard part is not beating yourself up. I tend to allow myself a little beating up. Then straighten up and change.  I am good at denial. Once it really gets through the fog or someone points it out. Sometimes we need a push. That’s okay. I used to surround myself with people who knew the problem but refused to do something about it. To quote a famous woman…Ain’t nobody got time for that.

4. Speak up for yourself at the doctors office, at the disability office, at the psychologist office.

Wanna know a good place to start? Ask for your records and read what the Doctor has written. You won’t get their personal notes but what is typed up.  They are not perfect. A lot of our symptoms are hard to understand. Keep a journal. Keep notes. Bring them to the appointment. Clarify what should be side effects and what are symptoms. If its not working for you. GO BACK. The only way any progress is going to be made is through good communication. I have been told its hard to believe I have anxiety because I discuss it so openly. I want help, I know I only got so much time. I wrote down what was bothering me in order of how much it was bothering me.  When I want the help, I go out of my way to make sure I get it. When I know I need the help but am not convinced or am not ready to ask for the help, I can be pretty vague. I am lucky I have a few friends that don’t take vague answers.

     That being said, sometimes it is easier or even better to bring a friend who can speak up for you, or bring things up. Sometimes you need an advocate who knows what you want and what you need and is willing to do that for you. I have to say I have someone who will do this. She told me in no uncertain terms that next time I go to the ER with me because she can’t stand the anxiety me even being there gave her. So for her anxiety she is going and she is was not happy about the end results of the ER. You think cops can give the third degree….They don’t have anything  on her.

5. Don’t wait.

If you want to do something, do it. If you have a passion, pursue it. Like photography, make it work for you. Like writing, start a journal or a blog. Don’t wait for it. Later I will be able to do it. Later I will have time. NO make time for it now. It seems trite but its true, don’t put off what you can do today. Make your life what you want it. Don’t let Chronic illness/pain tell you what your life has to be. The more I do what I love, walk, read , photograph, write, the better I feel. The more equipped to deal with my symptoms I am.

6. Search for enjoyment

This kinda ties in with number five. Don’t wait for enjoyment. Don’t expect it to come to you. Don’t say I will do that when I feel better. DO it now. Search for what makes you happy and then work at incorporating it into your life as much as possible. Be willing to try new things in the name of searching for enjoyment. I don’t know if I will like that. TRY it once. Think about it, think about  what you did like, what you didn’t like. Think about it. If it didn’t quite work but you liked it,think about how you can adapt it.  

7. Breathe

Deep Breathing is so incredibly helpful. Look up some exercises. Start small, but start. Expect lightheadedness at first. Oxygen is so helpful and  with how much we lay down sometimes we forget to take some deep breathes. 

8.  Slow down

Schedule down time. Plan it so it happens.  Sometimes I have to rest in between each activity. Sometimes its after all the things I needed to get done that day were done. It helps. It really really helps. Sometimes I alternate twenty minutes doing an activity, folding laundry, Twenty minutes resting. This is something I am not good at. Pacing. I know its important.  I just can’t always make it happen.

9. Eat like you mean it.

If you don’t feel good and you are constantly eating junk food there is most likely a connection. I know its hard when you feel crappy to eat healthy. Some days it is not easy to eat healthy. Sometimes I give in. I eat only what I actually feel like eating.  I say it often enough, my vice is mountain dew. Try and tell me what is actually in it….I will stick my fingers in my ears and scream LALALALALALALALALALALLALALLALLALA.  Try just starting with fresh fruit or vegetables. Like with everything start small, small steps tend to lead to success with chronic illness/pain people. We like small steps, there is less pain in small steps. If you haven’t been eating healthy expect your stomach to not be happy. After your stomach gets used to healthy foods, your brain will revolt. We NEED DONUTS. We NEED donuts and mountain dew. WE NEED IT!  Sometimes I can find a fruit to quench the sweet tooth. 

10.  Hydrate hydrate hydrate hydrate

Water. Water and more water. Water is so important. Get the flavor drops, Drink four oz at a time that you can toss back like a shot.  There is so much water can do to help. It will amaze you.  It is true switch out one soda with a glass of water a day. Drink a whole  glass of water with your pills.  Drink water and then drink some more.  If you are worried about drinking too much water work some gatorade in. A glass or two to help but honestly us chronically sick people take a lot of meds. Our organs like it when we give them a lot of water with our medications. Our brains love it when we drink water. To be in TMI territory…..drink enough water that your pee is almost clear. Truthfully if I am not feeling right, I try to remember to see how clear or dark my urine is. It makes a difference. Our body is made up so much of water, it has to get that water from somewhere. 

Nothing earth shattering here. At least I hope its not. However sometimes we just need that gentle reminder. I am not an expert at any of this. Its all trial and error. Hopefully we help each other along the way on our chronic illness journey.

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2 responses »

  1. I love your tips… my favorite is Number 5. I feel like I have waited for so long to do certain things I wanted to do, because I was hoping that at some magical time in the future my brain would be working so much better and I would be a different person. It didn’t happen, and I’m burning daylight. I’ve also been trying to eat healthier and I’ve been drinking a ton of water!

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  2. All really good points. I haven’t done #4 because I haven’t been in offices all that much, but all the rest I sort of think about but have never articulated. 🙂

    Like

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