Tuesday, September 25, 2012

Honesty!

"Autumn Colors"[by dan] / FreeDigitalPhotos.net
I really thought I was going to get caught with "blank page" syndrome today.  Then, I prayed and asked God to help me know what to write about.  Writing about changing our habits just didn't seem to fit today, even though, I know it is helpful.  I will come back to that:  in fact, I am considering writing an online diary of my adventures in FlyLadydom.  Today, I may touch on some sensitive issues.  Usually, my message is very positive, because I want you to know there is life after diagnosis; and,  I want you to be able to do the things to get there.  Instead, I am going to let you know that I feel crappy!  For those of you that know me, you know I  avoid any term that could be considered vulgar.  However, I cannot think of a better term right now.  In fact, even though I know I could do the looking up a synonym thing, I do not want to use another term.  This icky, yucky, about to fall off a cliff feeling is here, and ...
I recognize it


 If I have been feeling better than usual, almost normal -- this dischordant, wobbly, off-center sensitivity usually precedes a flare-up of my chronic illnesses:  fibromyalgia  and chronic fatigue syndrome.  And just to be clear, I also have erythema annulare centrifugum, diabetes, osteoarthritis,  NASH, and spondylitis in my neck and back.  I have had the spondylitis since I was a teen, but nobody ever told me it was degenerative.  I didn't even know it was spondylitis, until I was in my fifties, but it has been with me for 45 years;  and I still managed to live an active life into my mid-forties. I am not saying that to brag.  I think I am just stubborn, and I did not say I was sick until my body was taxed to the point that I became very depressed.  It has literally taken me years to find out I was not just depressed, but I had so many things going on in my body, I have an inkling they are linked.  Have you ever noticed how many, probably most doctors treat each condition as if they were separate?  They even treated the depression as if it was separate, which tends to make a person feel like a head case, even when the doctor says, "You are not crazy." Maybe, I would feel better if I could get rid of the depression is what I thought for years.  The amazing thing to me, after being depressed for 14 years, was I went to a doctor who specialized in fibromyalgia and chronic fatigue syndrome, followed the regimen I was given after extensive testing, and the depression went away.  I still felt sick, but I no longer felt depressed.  Actually, that was a relief!

That is a synopsis of my story without any frills.  I know there are overlapping symptoms with many illnesses.  That is why I did not name my blog and Facebook page as a fibromyalgia or chronic fatigue syndrome support places.  However, I believe the feelings and psychology are the same.  We have to manage the hand we're dealt.  It's not a piece of cake.  Moreover, it is a pilgrimage of sorts, because every part of our lives are touched by illness, and most of us keep looking for ways to feel better.  I am not going negative on you, but to give the impression I always feel good about my life would not be authentic.  I have to tell you the truth.  And to be honest, I have tears in my eyes, even though I have tools to get back where I am pacing myself better, and I know the factors entering into the way I feel today.  Why?  Because I get so very tired of the up and down cycle of these diseases, so many call syndromes.  Just because researchers are not really sure what causes something, it's a syndrome.  Ugh!  And I know that you get tired too.  Sometimes, you just want to give up, because it seems there is no end to the pain and the torment of managing your illnesses.  I wish I could fix it, but I can't.

However, I can tell you that you are not the only one, that there are real people out there that understand, even if you have not personally met them face to face.  I really don't know why so many people are afraid to admit they are sick or to get support.  I would have jumped at it, if I had a safe support group to go to.  And I was diagnosed with panic disorder and agoraphobia in the 1990's, which does not fit my personality at all.  I suppose it is because many people look at a person with an invisible chronic illness as weak.  Well, let me tell you, it takes a strong person to live with chronic illness and keep going day after day.  Sure, I have felt weak many times and I still do sometimes, but there is strength in weakness, when you give it to God.  If it wasn't for my Savior Jesus Christ, I do not think I would be able to stand up and do any of the things I am doing today.

God bless you all, and I hope you are having a good day.  Tomorrow, I am going to talk about what some of the warning signs are for me when I am about to have a flare-up.  See you tomorrow.


P.S.  I have been having a little trouble typing today.  I keep switching letters.  Sound familiar?  Please let me know what you are thinking if it fits in with managing your body and pacing yourself.  I am adding some click on boxes for you that do not want to make comments.


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It's always lovely hearing from you. xoxo, Deborah