Posted 4/24/2006 12:16 PM (GMT -6)
Boy do I know what that's like!! Don't worry, you're not alone. It took me 10-11 YEARS to finally get a diagnosis... and it was quite frustrating to put it mildly.
The overwhelming fatigue, headaches, not being able to remember the smallest things,... pain... etc... etc... I thought I had something wrong in my brain too. I'd get so frustrated because I couldn't remember things, was so tired all the time, and was surrounded by people who just thought I was being lazy constantly telling me all the time that I'm lazy, unmotivated, etc... you name it it's been said. And that was the most frustrating. Because it wasn't that I wasn't motivated, it was simply because I didn't have the energy... and that made me feel even worse!
But don't fret or get yourself down about it... there is hope!! Even though they don't know what causes it, or how to treat it or cure it, there's still Doctors that are willing to help, even though they may be hard to find.
I've been on Provigil since February, and it's helped me TONS! I find it a little easier to focus, I have energy to get through the day (although it's not a miracle cure, but I almost feel "normal"). Saturday and Sunday I forgot to take my meds... omg it was horrible. I couldn't see right, couldn't visually or mentally focus on anything, was so exhausted it wasn't funny, I just felt HORRIBLE!!! It was rather late in the day Sunday, so I only took 1/2 of my Provigil, it helped clear me up some, and remembered to take it this morning, and I'm back to my old self I feel.
I recently got back to work (March 27th) as a 911 Dispatcher, and was worried when we started training that I wouldn't be able to retain all the information that we have to learn. I studied and studied and studied, and for the life of me I've been having a heck of a time remembering all the 54 "Ten Codes" and 18 "Lookup codes" we have to learn. (ya know like 10-4 means ok?)... I got a 93% on my switchboard test, and it was a slow night, so I wrote a story using all of the 10-codes and lookup codes, and it helped a lot!!!
I know there's people on here who's fatigue is worse than mine, but the most important things to remember are these:
1. (my personal motto) "No matter how many clouds are in the sky, the sun is still shining. Remember that, just because you can't see it, doesn't mean it's not there".
2. The Chinese Yin and Yang theory. There is bad in every good, but there IS good in EVERY bad. If I can find something positive out of being raped at knifepoint, you can find something positive out of 99.99% of things in life period. (The positive? I'm still living and breathing, and give thanks for every day I do wake up)
3. You CAN do it! Think positively. It's really REALLY hard to do sometimes, and believe me even recently I've gotten so frustrated with things at times I've wanted to just (no pun intended) lie down and give up. There IS a light at the end of every tunnel. Just remember not to push yourself TOO hard,... take baby steps if needed. Some progress is better then none at all!! We all want to be better NOW... but we must have patience too. If you push too hard you might fall backwards. Know your limits, and live by them.
4. Don't pity yourself, or ask "why me"... it gets nothing accomplished. Everything happens for a reason, even though it may not be clear. Maybe our purpose is to give hope to others, maybe someone is trying to tell us to slow down, who knows? There's ALWAYS someone out there that has it far worse than we do, and they're still tickin. Granted we do have a lot more obstacles to overcome than others, but it can be done!!!
5. "Lord grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to hide the bodies of all the doctors I shot when they told me 'Your're perfectly healthy, it's all in your head'"
6. "To dream of the person you would like to be is to waste the person you are"
about Provigil (because it'll probably get asked) ;)
It's a drug made by the company Cephalon, which it's intended use is to treat people with excessive fatigue from Narcolepsy, Sleep Apnea and SWSD (Shift WOrk Sleep Disorder)... but has been used fairly widely for people with CFS/CFIDS. There is no other drug in it's class, and there are no generics available. It's pricey, but if your insurance will cover it it helps a lot of people. Granted, like any drug it's not for everyone. There's also a program offered through NORD by Provigil or for Provigil, in which where if you meet certain income or insurance criteria, they may provide the drug to you at no cost or reduced cost. www.provigil.com This is through the US only to my knowledge, and Provigil is marketed under a different name in other countries... but I'm not sure of the exact names.
Welp that's it for my inspirational post of the day, hope that helps and remember...
SMILE!!! It excercises your cheek muscles!!!