My story (short version)

I am forever fighting, forever trying something else, forever reading, looking for new research, someone Else's story of recovery, a new
supplement or something that helped someone else. It took me a long time just to except the cfs diagnosis. How can a "syndrome" make
you feel worse than someone having chemo for cancer, a friend of mine had breast cancer, she was more "clear than I was at that time, more active and more everything else. I had neurological fatigue for 17 years flat not lifting once....

I want to experience working hard through the day and come home tired in the evening again, at 47 almost half of

my life consist of of how horrible I feel, every second of the day, one thing I will never ever take for granted again and that is

energy, a feeling of well being or just to feel normal I live in a tunnel of chronic fatigue and all the 1101 symptoms that comes and

goes with it seems like forever.

Here is my story (in a short version)

I was born in South-Africa and lived there for 36 years , my first language is Afrikaans....that's why you must please excuse my

word use and every thing els that comes with it, or maybe I am brain damaged for I lost a lot of abilities.

24 Years ago, a very active and full of energy me was working in a environment (Dental asst.) someone spilled mercury in one of

the rooms where we spend most of the day , who, how and why, I do not know, obviously the mercury went through the carpet, it was

discovered only months later, by that time I already started feel strangely tired , I went from a active athlete to a sickly

person almost over night. I must add in that time I was also under extreme stress in my work and personal life, well actually stress is my middle name, seems like since the time I was born stress became my Siamese twin.
I also have to mention, I had my fair share of viruses, I do not think my mom took me for my shots when was a baby because I had all the childhood deceases, from whooping cough to chickenpox 2x and years after that shingles, glandular fever. After the epstian barr the cfs became worse.

The cfs worst symptom in the beginning for me was neurological fatigue, that unbelievable tired feeling in you head.

23 yr ago I walked up the stairs in my house and thought "how can someone feeling like this still be alive" 23 years later I am

still here and fighting cfs. There is not a symptom I haven't had, not a feeling of hopelessness, despair, frustration I haven't

experienced. I've being through the valley of darkness many times, the pit of utter desperation knows me well. Thoughts of suicide

cross my mind often, but my spirit is to strong to let it go further than just a thought. The same horror stories of dr after dr

only to be prescribed yet another antidepressant. The last Dr I've seen sat with the same grin on his face I give my 8yr old son if

he tells me stories when he doesn't want to go to school!! I was labeled the "all in the mind diagnose" as well, by a USA dr and

at that time I was really really sick, nausea and vomiting became my second name.....we just move to the USA.I do not want to see another

Doctor again unless it is my "your wish is your command dr" I am stll on lortabs and neurotin. I do a lot of research, use myself as a "lab-rat" made myself very sick at times but also learn a lot of why,s and how's

what work for me and what not. I got out of bed 9 months ago after the 3 year "lay down and die" session of my cfs life and decided

I have had it, yes it is still hell but at least it is hell on my feet not lying down, I feel glimmers of well being, I have my

creativity back (most of the time), I am clear (no feeling of detachment) I can keep my house clean, climp in the car and go from shop to shop (most

of the time) where I had to rest for 3 days to maybe make it to wall-mart, and half way through my grocery shopping, get the

crushing feeling that I have to get home and lie down.
I can tell you this

if there is one thing I do not want to repeat ever ever ever and that is "my life" Hell yes I have a spirit of steel and I serve "the God of love",

the only two reasons I made it this far, .....Haven't He said "God blesses those who weep now, for they will be comforted later"

but to tell you the truth I know that I know something must happen soon for I reached my limit 10 years ago.But the last few months is more tolerable. if I crash it is only for a day or two and I worked out a protocol that I can go back to and it haven't failed me yet. At least I am in control of cfs at last and not cfs of me, if I have a setback I know why and what to do about it.

I know we are not all the same, but maybe someone can be helped out of my experience, still it is just treating symptoms and getting energy out of a body that went into some self perseving state. In my next blog I will give you "the lab rat" protocol. (It took me 2 days to write this...darn I must have some brain damage)

Comments

Lots of virtual hugs :) At least you know, you aren't alone. There are many of us out there with this.
 
just wanted to say you may want to consider folapro or folinic acid instead of folic acid. The bioactive forms of folate are more useable by the body. Check out richvank's posts for more details.
Also, don't know if you are in the market for a cfs doctor but there's dale guyer in indianapolis and mike dessin's doc in Dublin, Ohio, outside Columbus, who are not too far from you.
If you go to guyer, private message me first, i can help you get a discount. He's still $$275 though for the first consultation,
I haven't seen him, but I hear he's not bad as far as CFS docs go.
good luck
aquariusgirl
 
Thanks Carrigon for the virtual hugs...strange how communication with others in the same boat a you helps, this is the first time I have enough energy and what else goes with it to sit and write about my journey with cfs.

Aquariusgirl, actually that is one of the millions of supplements I have in my cupboard , to tell you the truth, it haven't cross my mind yet to investigate the difference between folate and folic acid, good idea to keep me busy while I am resting a bit. Some how I neglect to drink my folic-acid a while ago and the vertigo lightheartedness thing stuck it's unwelcome head out, so what I usually do when a symptom comes back I care fully goes back to my "what did I do wrong" routine. In that way I discovered the need to take it everyday with iron.

Sigh!! The doctor thing....I completely and totally lost my faith in doctors (with cfs, that is) just to many bad experiences:Retro mad:. I went to a dr n Indianapolis he got something like $1200 out of me. If I took that money and gave it to the homeless man on the corner, he could at least drank his sorrows away for a week:D instead of issue the good dr with his monthly down payment on his expensive red sports car.
 
I understand where you are. I got worse in 2001 due to two amalgams being removed from my mouth without a dam. I became deathly ill and started having diarrhea constantly. It was awful. I felt like I was going crazy. Ever since then I have been constipated. I have been sick for 21 years and have not given up but trying to get the mercury out, detox, clear the body and just all of it; I am sick of. I am not a bouncing rabbit of hope.

Welcome to this site and thank you for sharing your story. Someone else will identify with it and feel the same way after reading it; sad and yet I know I am not alone. The doc outside of Columbus Ohio costs a fortune in my opinion. Your savings will be gone. No thanks.
 
Thanks for sharing your story. I know how much energy it takes to write that much ... And I too have pretty much given up on doctors for this illness. I keep looking, and asking, but ... even the great ones who have listened to us from the beginning, (Dr. Peterson, Cheney, etc.), are still just guessing how to treat this thing. Nobody really knows ... Actually, I'd say WE are all the experts. (Not to denigrate the doctors and researchers who care and are working on it ... ) We know so much and have tried everything. Anyone who thinks we are lazy should see how much work we have put into trying to get well ...!

Anyway, hang in there. I'm glad you haven't given up. Keep doing what you're doing and enjoy life as much as you can...

Blessings,
Emmanuelle
 

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