Hi Kathy,

You wrote: It sounds to me like we definately have some things in common. I also have fibromyalgia and chronic fatigue. Although frankly they are the least of my problems at this point! LOL. But I understand how debilitating they can be. I remember going through a chronic fatigue cycle once when I stayed in bed for about 2 months. I was so exhaused, that walking 12 feet to the bathroom meant I had to sleep a few hours to recover. I pulled a kitchen chair next to my bed, put a little tv on it and laid on my side, 12 inches from the tv because I didn't even have energy to turn and look at the tv across the room. I just drifted in and out of sleep in that position. Even chewing food was exhausting, and after a meal, I would sleep to recover. So it can be devastating, even for me now it's not the bigger issue. Same thing with fibromyalgia...the pain can be incredible. If I'm having a flare up, it feels like someone has taken a baseball bat and beaten me with it. I am blessed that my fibromyalgia isn't as severe and many people... I only have flare ups when I travel... changing environments really causes problems.... and getting physically stress like if I have too little sleep really causes flare ups. But for many people it is constant.

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Is it okay if I save this and use it to explain to someone what it feels like to have FM/CFS. I have NEVER seen it explained so well. And yes, that is exactly how it is for me, including the television a foot from the left side of my bed. Going to the bathroom can be a nightmare!

I have a number of medications that make it possible for me to get out and about, but only if I plan it right, and only for a day. And of course, the next few days or week are crash time. But I've even met a number of people from this site, and it has been a blast for me. This was a great thing, because I've essentially been isolated for the last eight years, and, a year ago, would not have had the courage to meet anyone. People are surprised when I say that, but it's true.

Regarding the food, yes, I've gone raw before; in fact, I still eat nuts, veggies and fruits. Also, twelve years ago I lost 80 lbs by just eating right and exercising. I did not "diet," I just ate healthy. When I became ill, I tried it again, especially when I started gaining so much weight so fast. But my body had changed so much it never made a difference. I never felt any better at all.

I agree I've gone completely the other way, eating whatever I want, especially the sugar. I agree that I do feel better without the sugar, in one sense. In the other, my body craves it so much, I actually feel sick if I don't eat it. So, I have given up, I just give in to the sugar. It's been like this for eight years now, and I am so sick of fighting it.

Of course, the sugar has long-term effects, and I know I will pay the price.

I don't live alone, but I really do. My mother bought a house so we could live in it, because she knew I could not work and every chance I get I tell her how grateful I am for her doing that.

However, we do not get along at all. So, I stay upstairs all day while she stays downstairs.

If you were asking to see if someone could help me with preparing the food, it does not work for me to ask my mother to do that. She does not listen to me about what I need, and makes substitutions without asking me, because SHE doesn't think it's a problem. And I do not have the energy to explain things like this to her anymore. I‘ve done it a gazillion times, and it exhausts me, and I can‘t do it again. It would do no good.

I have written her step-by-step instructions, and she either doesn't read them, doesn't understand them, or purposely ignores them. And I know it is hard to believe, but the latter is very often the case.

This is one of the problems I have being around her, and, after all of these years, have accepted this is the way it is. But we get along much better if we stick to our respective floors.

It's very hard for me to talk about her like this, because she has made great sacrifices for me. I really am incredibly grateful to her for that.

Yes, your health problems are far greater than mine. Your diabetes sounds horrible, and it must be so incredibly hard to know that if it weren't for that, you'd be able to heal yourself. I can't imagine living with diabetes when you're allergic to insulin. How do you even do that?

Please don't think I'm blowing you off about the diet. I know what the right choices are. . . I just can't make them happen. However, it is my fault my mother buys me the sugar. She's just doing what I ask, and it's not something she gets wrong, so I keep asking.

Actually, celery and carrots sound really good right now!

Elphaba

Elphaba,

Thanks for your kind words.  So far I have only read blogs from 4 or 5 people, I'm going to spend some time reading a bunch because they do reveal the heart of a person.... I like that.  I'm looking forward to reading yours.  In fact I read one today, where you talked about your daughter.  It was obvious that you have great pride (the good grateful kind, perhaps I should call it pleasure) in your daughter.  As it should be.  Aren't children amazing.  I think the best, most rewarding thing in my life has been my family.

It sounds to me like we definately have some things in common.  I also have fibromyalgia and chronic fatigue. Although frankly they are the least of my problems at this point! LOL.  But I understand how debilitating they can be.  I remember going through a chronic fatigue cycle once when I stayed in bed for about 2 months.  I was so exhaused, that walking 12 feet to the bathroom meant I had to sleep a few hours to recover. I pulled a kitchen chair next to my bed, put a little tv on it and laid on my side, 12 inches from the tv because I didn't even have energy to turn and look at the tv across the room.  I just drifted in and out of sleep in that position.  Even chewing food was exhausting, and after a meal, I would sleep to recover.  So it can be devastating, even for me now it's not the bigger issue.  Same thing with fibromyalgia...the pain can be incredible.  If I'm having a flare up, it feels like someone has taken a baseball bat and beaten me with it.  I am blessed that my fibromyalgia isn't as severe and many people... I only have flare ups when I travel... changing environments really causes problems.... and getting physically stress like if I have too little sleep really causes flare ups.  But for many people it is constant.  Do you live alone, Elphaba?

I promise you that if you can find a way to stop eating processed foods and eat raw fruits and vegetables and cooked foods most carefully.... rice, beans, etc, that the pain from your fibromyalgia will go away and your energy will amaze you.  I first learned about it while doing an internet search on natural cures for fibromyalgia.  I ran across a message board where a woman posted that she had no pain from her fibromyalgia since going raw.  I thought about it for two years, then with my declining help, jumped in.  It took 5 days and the difference was great.

My big problem now is that I have been an uncontrolled diabetic for over 25 years and I am allergic to insulin.  So blood sugars run way too high, and the diabetes has been making inroads on the rest of my body.  If not for that fact and the long time this has been going on, I think I could have totally healed my body by eating right.

So I want to encourage you to not eat the junk.  Whoever buys your food.... you can buy celery sticks and baby carrots and stuff like that already to eat.  Buy prepared salads if need be.  Just don't eat the processed foods... they will kill you!  Eat raw nuts for protein, or bean and rice mixed together will give you protein. Those you can get canned... just don't get them full of other stuff.  Don't eat ANY sugar at all. NONE.  You can buy agave syrup as a sweetener. it tastes every bit as good as sugar but is full of nutrition.  Or use Sweet Leaf plus stevia.  Don't use the drops, they don't taste good.  Use the powder.  It sweetens while providing nutrients.

Here is why raw is important:  Enzymes are produced in your body, and in produce.  When you heat an enzyme over 118 degrees, it dies.  So the beans and rice, etc, can be handled by the enzymes produced in your pancreas.  But the enzymes in the fruit, you need to eat raw so the enzymes are live.  This is called Living food.  Food that has been cooked is basically dead food and cannot nourish your body well.  Try to eat 80% of your food raw.  As your energy starts to increase, there are all sorts of fancy recipes you can make with raw food.  I make a marvelous spagetti that has no processed pasta in it at all, it's 100% vegables, but it is delicious.  For now, just start eating as much fruit and vegetables as you can... raw.  Your taste buds will wake up and soon you will love it... and you find after a while that you want less cooked food.

I have to remind myself of this....one struggle I have is that my kidney failure has made me extremely anemic and because of the anemia I get very cold and so I crave hot food to warm me up.  I came home from church today just bone cold... I swear my building is the coldest church on earth... lol.... and I ate soup just cuz I wanted hot food.  I'm tryingto eat more ginger and stuff like that, they are warming. 

Try it for 30 days.  Try it for a week!  You will be amazed at how good you feel.

Okay, sorry I talked so much!  I am looking forward to reading your blogs and getting acquainted.  Perhaps we can be a blessing to each other!

Kathy

Aka Sister of Jared

Elphaba wrote: Hello Sister! I don't know if my "blog" thread made you think about posting this or not, but it moved me profoundly. I, too, think I will die soon. I have health problems as well, though nothing even close to yours, not even. I am disabled with fibromyalgia/chronic fatigue syndrome. These are not terminal diseases in and of themselves. But because of them I spend most of my time in bed, and because of this, other parts of my body are being affected. I just know I'm going to get a blood clot because I move so rarely, and it's going to hit my heart and kill me. Or something else is going to happen because I am so sedentary. And I, too, wonder if I am "willing" it to happen. I just eat crap all of the time, because it is very hard for me to stand, unless I've taken a gazillions drugs that I can't take every day. Thus, I can't fix healthy meals, and so I end up cooking frozen pizza every day, and eating crap crap crap in my bedroom. And, frankly, even if I could make better choices about what I eat, I don't want to. I used to be extremely suicidal. Death lingered over me every moment, and I knew that was how I was going to die. In fact, I thought I HAD to die. Then a serious attempt knocked me to my knees, and I realized how close I came to destroying a wonderful person, me. Thankfully, the constant strategizing, and dread, is gone now, as I will NEVER do that again. Yet, it still lingers. So, am I trying to kill myself through more "normal" means? I wonder about this a lot, because if it happened, I won't hurt anyone in the same way a suicide would have. How crazy is that? It sounds like you have a wonderful family, and I am glad for you. With all of your serious health problems, that can be vital to your survival. Thanks so much for posting to the blogs! Elphie

You are so strong!  I, for one, am and always will be proud of you for the woman that you are and the faith I've always seen in you.  I'm sorry I live so far away from you.  I would like to be there in moments like this morning when the fear is present, and hold you and pray with you and talk with you.  I love you so much!  I pray with all my heart that Heavenly Father is not preparing for your return just yet.  I know this is a selfish desire, but it's mine all the same and I'll own it.  I want you here.  Royanne can wait, and so can Edson.

Hello Sister!

I don't know if my "blog" thread made you think about posting this or not, but it moved me profoundly.

I, too, think I will die soon. I have health problems as well, though nothing even close to yours, not even.

I am disabled with fibromyalgia/chronic fatigue syndrome. These are not terminal diseases in and of themselves. But because of them I spend most of my time in bed, and because of this, other parts of my body are being affected.

I just know I'm going to get a blood clot because I move so rarely, and it's going to hit my heart and kill me. Or something else is going to happen because I am so sedentary.

And I, too, wonder if I am "willing" it to happen. I just eat crap all of the time, because it is very hard for me to stand, unless I've taken a gazillions drugs that I can't take every day. Thus, I can't fix healthy meals, and so I end up cooking frozen pizza every day, and eating crap crap crap in my bedroom. And, frankly, even if I could make better choices about what I eat, I don't want to.

I used to be extremely suicidal. Death lingered over me every moment, and I knew that was how I was going to die. In fact, I thought I HAD to die. Then a serious attempt knocked me to my knees, and I realized how close I came to destroying a wonderful person, me. Thankfully, the constant strategizing, and dread, is gone now, as I will NEVER do that again.

Yet, it still lingers. So, am I trying to kill myself through more "normal" means? I wonder about this a lot, because if it happened, I won't hurt anyone in the same way a suicide would have. How crazy is that?

It sounds like you have a wonderful family, and I am glad for you. With all of your serious health problems, that can be vital to your survival.

Thanks so much for posting to the blogs! Elphie