Hi Oceanblueskygirl and everyone else,
Yes, it's very difficult dealing with this horrible disease. I guess in a way I was lucky because I slept all the time (due to ehrlichiosis). I lived alone and had no support except for the forums. My family also told me that it was all in my head even when I finally received a diagnosis. No one understood, not my friends, not my husband at the time (now ex-husband), no one.
I think what helped me was trying to accomplish little things (I loved to crochet angels) and forcing myself to do a little work. I remember I was terrified of cooking because I was scared I would fall asleep and burn down my house.
I took it one day at a time, I think that's all we can do. Even though I am better, I still take my life one day at a time. I can't change yesterday and tomorrow isn't here yet.
I thought I would never get better and it was a long rough battle but here I am so please never give up hope and know that there is a light at the end of this dark tunnel...
I found a poem I wrote when I was suffering about 6 years ago:
Why does everyday seem like a struggle,
Problem after problem, give me peace….
Challenges could be nice if random,
But my challenges grow like wars….
Only getting bigger and stronger….
Heavier, burdensome, longer….
Why does everyday feel so lonely?
Perhaps because I fight alone….
No rest for the weary they say,
But weary I am all day….
Why does everyday take its toll?
Feeling like crawling into a hole,
Deeper and deeper I sink…
Searching for the right link…
To find a path so whole,
To stop feeling like a mole….
But springing into a butterfly,
Enjoying the roses and blue sky…
In any case, I am a strong believer that is your protocol is not working, take a risk and please try something else. Just because Dr. Jernigan's worked for me, doesn't mean it will work for everyone (though I believe if one is willing to do the work required in Dr. J's protocol, it does work). Read different books, learn, learn, learn! Do your own research and somehow, something will click and you will start feeling better. Don't stay in the same rut with the same old protocol.
Post about how you feel, keep a journal of all your feelings (something I wish I had did).
I wish you all positive thoughts!