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16 April 2010

This week

There is a lot going on in my head.

I had some tests done recently that "prove" that i'm unremittingly tired.  

I'm really struggling with this severe fatigue that continues day after day.

The first time this fatigue hit me like this was the year i was 16, tho i had some signs of this before.  I had a job that summer & was working as a waitress at a lunch counter.  One morning before work i had to go to the dentist for teeth cleaning.  I don't know what concentration of fluoride they used, but i was very, very sick for the rest of that day.  (Fluoride poisoning symptoms & amounts.)  

Not that i placed any importance on the event then, (except to hate that particular dentist even more) but in looking back at my history, it was from that point that i began seriously dealing with chronic fatigue.  When the school year started, i went to school from 7.35 until 11 in the AM.  I then went & worked at the lunch counter from noon until 6.  (I also ate what was served at the counter - not the highest quality nutrition.)  At the end of the day i'd drag myself home, try to do homework, & go to bed.  But i began having insomnia that interfered with sleep, & it became a never-ending round of fatigue.  The litany became, "I'm tired," day after day after day.

My mother's interpretation was not support.  After a couple of months of listening to it, her response was, "It's not fair for you to be tired all the time."

She didn't mean that in a "Oh, sucks for you" or "Wow, you're really struggling with this, it isn't fair, is it?" manner.  

She meant, "People do get tired.  We all get tired.  It isn't fair to this family & the obligations you have to this family to be tired all the time.  You need to do what you can to STOP being tired & start pulling your weight around here."  It didn't help that her response implied (to me) that i was being lazy as well.  Being lazy in that house was the worst sin possible.

Her response made me tired.  

In her defense, however, she didn't know i was dealing with the start of chronic illness; i didn't know that either.  No one had ever heard of Chronic Fatigue at that time.  There is hardly any treatment for it now, there certainly wasn't then.  If i was tired then i simply needed to do what i could to stop being tired !

My dad gave me a response, too, by saying, "What is wrong with you?  You're young.  You should have lots of energy & strength to keep going.  At your age i was milking cows at 5.30 in the morning & then went to school & then to an afternoon job.  You can't be tired - you're young enough you should have lots of energy."   

"Should have" doesn't help much when "don't have" is reality.

There is plenty more i could say about this, but not much point.  I stopped working after school at the end of the fall semester (which ended in January).  The fatigue didn't go away, & within about 11 months (total of 16 months of unrelenting fatigue) i was suicidal.  But obviously i kept plugging away, because here i am.

So why talk about this now?  

Well, every day, whether i voice it or not, my thought is "I'm tired."  The same litany.  And, after a certain number of days of this occurring, there is an answering voice that says, "It's not fair for you to be tired all the time."  

I'm feeling guilty about it.  

In my head, i hear the voice that says, "Nobody wants to hear how you are tired again today."  And, "Poor Duane, what a wife to have who can't do anything at all."  "So, he has to pay for the household help because you can't get out of bed."  Even, "What must Rebecca think of you when you're too tired to do much work, again?"  I could go on, but i'll just leave it at i've had an evil voice in my head.  I haven't much tolerance with my own self pity, & tend to come down on myself harder because of it.

But i will say that this self talk isn't as negative as it has been in the past. 

I guess that deep within me is the belief that people will eventually lose patience with me if all they hear is "I'm tired" day after day.  I sometimes struggle with the "Are you better yet?" concern i get from people (at church particularly) because it is hard to have to keep saying, "No."  And i feel that people want to hear that i'm better, not an unrelenting illness, & i feel badly about that.  

It hasn't helped that i sometimes feel this in odd places.  

I worked with a naturopath for about 9 months a while ago.  She was rather rigid in treatment & i struggled with the things she wanted me to do.  Thus, when i didn't get better, it was "my fault" for not following her protocol.  (Interesting, someone i know & trust recently recommended her to me, not knowing i'd already seen her.  When i explained some of my issues with her treatment, the person paused, thought about it, & responded, "You know, i got the feeling from her that my struggle in sticking to her program was my fault, too.  Hmmm."  I hope that my input means that my trusted souce won't blame herself anymore.  :)

The doc i work with ran the tests i got back this week.  He now knows how severely tired i am.  I worried about that a little, thinking that he might question having me work there.  I did ask him if the volume of work i'm doing is ok, & he said it was.  But part of me thinks that if his recommended supplements don't bounce me back before long, that he'll give up on me too.  

I showed John the test results yesterday, too.  The thing is, i know they are only a "snapshot" of one day in my life.  I did the test on a day after i'd been resting for 3-1/2 days.  If they had been done when we first get home from OC, or on a day where the insomnia had been worse, or a day when i woke up truly exhausted with my eyes in pain - which happens not unregularly - the results would likely have been much worse.  John's response to these tests reflected this reality.  He said, "These results are from a day when you weren't stressed, you had rested?  I hate to think what the results would be like on a stressed day." 

I probably need to find an endocrinologist who can "think outside the box" & can help me make some choices in my options.  I'm a bit overwhelmed by trying to do that, however, because this tends to be expensive & the ones who don't follow standard conventional protocol tend not to accept insurance. 

It is hard for me to post this.  But here it is.  This is where i live.



Lisa said...

I'm so sorry to read how long you've been struggling with these issues! You're in my prayers.

lisa said...

I got tired of being tired all the time and I went to the doctor and had blood work done and found out that I was anemic and now I am on iron pills twice a day. I am not saying that is what you have but it sure was what I had and i am finally starting to feel better and of course I started to excercise some to and that has also helped. I hope things get better for you.

Anonymous said...

Chronic fatigue syndrome is just that: a syndrome and it is real. Hope you have the support you need and deserve in taking care of yourself. Take care . . .

Mrs. Mac said...

I can only offer an ear for listening, a warm hug from afar, and prayers for healing. You have given a good explanation of your symptoms here. I pray the evil voice diminishes and you can somehow find one small positive to ponder that will be a springboard to more positive thoughts. Most people are uneducated about CFS .. you, my friend might have a calling to change this. Even if you offered a small pamphlet to anyone interested .. to get the word out about this condition .. it just might help countless others that suffer. Hugs

Stacey said...

I am so sorry that you are dealing with this on a daily basis and that you've found it hard to find support and understanding over the years. I sincerely hope you'll be able to find a doctor who can work with you on managing it. Thinking of you!

Land of shimp said...

Well, hey Kathryn :-) I haven't been around much, I've been adjusting to my dog, and she to me.

But you need to know something, when I saw your comment over on my blog, I was so pleased. I saw your name, and the association with your name was not, "Oh, that woman who is tired, and talks about it." it was, and is, and always will be, "Kathryn is such a kind soul." Nothing about your fatigue, nothing negative, nothing but're a kind a person, and what an asset that is to have in a life.

I do wish you felt better, but I wish it for your sake. Please tell the voices from the past that, that people value you for who you are, not what you can't do.

Poor Duane? Who has a wife who thinks the world of him? Who clearly loves him with her whole heart? I don't think of Poor Duane, or even Poor Kathryn. I wish you felt well, and had boundless energy, for you've a good heart, and deserve that well being.

That you don't have is not fair, and anyone who would ever, as an adult, look at you with judgment? I know I've said this before, but remember, I can guarantee they do not have a chronic issue in their life. They don't understand what a gift simply feeling well is. They don't understand, and they should feel blessed in their ignorance of the issue.

You know, I think if you asked Duane what he would prefer, a wife who leaped out of bed every morning, raring to go, or a wife that loved him wholeheartedly...he'd say, "I prefer Kathryn, no matter what that entails."

I know I'd say that about Rob, wouldn't you say that about Duane?

Please, always feel free to talk about what is going on in your life. It isn't boring, or mundane. It's part of you, and ...really...Kathryn, when I think of you? The first word that comes to mind is "kind", and then I think of how much you love your husband, and then your faith.

I can't even place where the Fatigue might enter into it, because the only thought give to that? Regret that you must deal with something like that.