Friday, February 24, 2012


Having a multi-system illness means varying symptoms, that often come and go without warning.  I think some are always harder than others, more frustrating or not as easy to deal with.  Everyone handles each symptoms differently.  It's so important to find ways to cope with them.  If something bothers you let it out, if there is something upsetting you, tell somebody or write it down or have a good cry.  You can't deal with an upsetting part of your illness if you're not facing it.

For myself, I hate when I get confused, aphasia (trouble speaking), and well we just call it "loopy".  An altered state of mind is frustrating for me, because I cope by thinking things through and communicating/talking things out.  This week I went through a long spell of these symptoms but I found myself able to cope in other ways, and to be honest I'm not really sure how to explain what I did I just know it worked out.  Those around me were so gracious as I stuttered and even fell silent, staring off into space. They worked to understand my needs and didn't treat me poorly.  I think that's a good 'step one' for ANYBODY: surround yourself with good seed, supportive people.  And don't let a bad seed bring you down!

As far as related thoughts medically, I've come to some conclusions over the years:
-Seek out physicians that you really like and click with.  It's okay to interview for a good  match for you!  Their priorities need to match your priorities.  If they are not listening, it's time to move on.  If you can't trust the person who is making important decisions about your health, then how can you trust their decisions?  Once you have trust in a doctor who is actively trying to improve your condition, and listening to what you are saying over their own pride, then you really do have a shot at improving your quality of life.  And there are so many amazing physicians like that out there!  It's not ALWAYS about seeing the "best in the business" for a particular problem, sometimes it's just about finding who is going to work with you.

I cope way better when I'm not stressed, and doing the aforementioned takes away unneeded worry.  Another thing I do from time to time is go visit a counselor I found through my Pastor a few years ago.  I had to see somebody before I could go to an inpatient PT/OT center as an insurance requirement, and ended up really clicking with her!  I find that talking things out to an unbiased 3rd party who can empower me through encouragement and sound ideas is invaluable.  In between, my friends, family, Heavenly Father and journal really get an earful!  Life is worth it, and just because it seems incredibly difficult doesn't mean it can't be good, amazing even.  I can try to inspire you with cheery feel-good quotes, but until you feel in your heart that you have something and Someone to live for, it won't mean anything. 

Zephaniah 3:17 

The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.

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