Wednesday, October 17, 2012

Handling the Truth about My Illness

Yesterday, I tried to write and all I could do was feel stuck in fog.  I even went to look up some information on what it feels like to have Chronic Fatigue Syndrome, as if I didn't know.  I'll share a link with you at the end of this blog post, but first I want to write while my brain feels clear.

"Autumn Colors"[by dan] /
How do I let you know I am being positive, even when I write about the realities of this disease?  I know that it is not officially a disease, because the researchers have not pinpointed the cause of the syndrome:  but, those of us who have it know it feels like a disease. And just because someone doesn't know what causes it, does not mean it isn't a disease.   That sounds sad, but it isn't depressing to me like it used to be.  The depression many have with Fibromyalgia and Chronic Fatigue Syndrome used to be unbearable.  For months on end, I think I did little but exist;  but, that has changed.  

However, that does not mean that I don't have to deal with the moodiness or feeling that I am coming down with something.  It does not mean I don't get tired of CFS and FM, or that for a while I might hope I will never feel this way again.  I know what is causing the mild depression; I try to do what I can every day; and  I know I did not ask to be this way.  Whether other people understand or not is something I cannot help.  Sometimes, I don't even understand.  I went to therapy before I knew I had Chronic Fatigue Syndrome, and that helped me with worrying about what other people thought.  I knew I had Fibromyalgia, NASH, and prediabetes.  What I didn't know was I had Chronic Fatigue Syndrome too, until about a year later.  I also have a strange skin condition called Erythema Annulare Centrifugum, which I have had since my late twenties.  I have had it for over 30 years and it varies in the places it appears, and in severity.  I had it all summer, and it was bearable.  Right now, I have one area that is quite deep -- and it burns, hurts, and itches.  But guess what!  I am not depressed like I used to be, because I know  that I deal with something I did not cause.  I know all this fits together somehow.  Furthermore, I know that God knows my heart, even when I doubt myself.  He knows me better than I do.  When I read Psalm 139, I am completely assured that God knows everything about me;  and my heart is calmed.  

Finally, I suppose some of you might wonder what this has to do with FlyLady's 31 Beginner Babysteps.  It is a matter of facing reality.  This summer I began to feel better and I was able to do more, including light exercise.  Some days, I felt as if I was getting better and would probably be able to maintain at a certain level.  Unfortunately, I could not do that.  As I added things into my life, I was sapped of more energy, and I did not recover well.  Then, I began to feel guilty and angry (usually at myself), that I could not live a normal life.  The fact is I have a new normal, or perhaps a better way to say this is I have a different normal.  And I know this is true for many of my readers.

Therefore, I will be mentioning FlyLady's 31 Beginner Babysteps in passing.  I am still going to work on my habits,  but at a pace I can maintain.  I cannot and will not please everyone.  It is impossible.  But I can pray, ask for guidance, and be happy in my circumstances.  If I try to do more than my body can handle to please other people, than I am not being honest.  I know there are times I put out more, because I am shooting for normal, whatever that is.  However, my body shuts down;  and it has done that to me for the last 20 years.  About three years ago, I  became so ill I felt like I had the flu all the time and I did not recover for even a few weeks.  I was desperate to find  a way to get well.  I knew it was not just FM and liver disease.  The point is:  I'm the one that has to live with it, as does my husband to a degree.  What anyone else thinks about me is irrelevant:  I cannot help it if people, who do not share my circumstances, do not understand.

Whatever chronic / invisible illness you have -- you are the one, who knows how it makes you feel physically, mentally, emotionally, and spiritually.  Nobody else can determine that for you;  however, there are counselors that can help.  And if you know God, He will help you too, whether that means complete healing or coming to terms with living on this earth with a disability.  

That is enough for today -- somehow, I don't feel like this is a finished subject.  I'm going to get a snack, put some laundry in the dryer, and rest.  Maybe, I will look at FlyLady's 31 Beginner Babysteps for encouragement.   However, I want you to remember that doing the Babysteps is an experiment for me.  I am not going to feel guilty when I cannot do them, nor do I want you to feel guilty.  Resting is doing something.

The following link is an informative one on post-exertional malaise and how it feels:  Unraveling Post-exertional Malaise by Jennifer M. Spotila, J.D.


  1. I just wanted to say I so get the 'new normal' or different normal and getting frustrated with yourself briefly when you feel like you can do a bit more then you realize not entirely true....ahhh the ups and downs of chronic illness. Glad to find your blog and will for sure follow. Take care!

    1. Thank you, Karen. Now, I can smile at myself, and say, "I should have known." It sounds like you understand.

  2. Hi, Deborah, so nice to "meet" you and your lovely blog. I have done Fly Lady and found it so helpful when suffering the fog of fibro and other chronic illness it really got me motivated. Now most days it is like second nature. Especially love clearing those hot spots and having a clean sink and i do seem to feel the organisation spreading from there. We would love to include you at Fibro Bloggers Directory as soon as you add a badge from our site to yours. Thanks

    1. Thank you. I will do that today. Also, I want you to know you comment is a godsend. I was absolutely rebelling at doing anything in the house today, and reading your comment encouraged me. That is so cool. This is exactly the reason I started my blog, so a conversation would be generated, and we, who have chronic illnesses, would encourage one another. I am amazed how many people that have FM and CFIDS are now writing blogs.

  3. I am glad I helped someone today and isn't the world wide web cool, connecting with so many people. I live in Sydney Australia

    1. Today, I am showing my husband your comments and all the changes I made to the blog yesterday. I love doing this: I have wanted to write for such a long time. Actually, I don't know how you feel about this, but it is a calling for me from God. And, I'm not sure if I ignored it for a while or I just wasn't ready. I had started a children's book in the 90's with very good illustrations, and a rather unkind person made my feel like it was not worth anything. I should have considered the source, and gone ahead with the book, but I was quite depressed at the time. If I can find the material, perhaps I will start working on it again or start a new one.

      Yes, the world wide web is very cool. And I am not as scared of it as I was. I have met so many wonderful people through it, that I consider friends. There are some people that you know you would have just as much enjoyment talking to them in person, as on the web. That just gave me an idea for another blog post. Just when I think I am running out of ideas, one pops in--nice for me--hate facing a blank page with no idea what to write.

      I am so glad we have "met." Have a great day or night! I need to check the tables to see how many hours difference we have. What season is it in Australia now -- spring? I am going to have to do a Geography review.

      Your friend, Deborah

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