Okay. I have to write this for those who seem to have no hope.
YOU can get better.
I got better. I had a good doctor and it took about 1,000 days (3 years), but one day I had no pain and no symptoms.
There are LOTS of great people here. I see many familiar names... Hello, dear friends!
One of you told me many years ago that "Your Brain Is On Lyme."
Those few words helped me the most when dealing with my personal "head case" of Inner Lyme Combat Syndrome (just made that up-ha!).
Probably the MOST valuable piece of advice I ever received was from MadFrog (I used to be MadButterfly - of course, we were copying our friend, MadDog.)
MadFrog said she had to live some days "without everything being about Lyme."
WHEN I started filling my days with other things. WHEN I started working --- even just a few hours a week. When I started focusing on other things besides how I felt... I felt better.
I started with one hour a week of work. It grew to two hours a week. That grew to three.
After awhile, my life became more about work than Lyme Disease.
I did have a few relapse-type symptoms come up for a couple of years. I couldn't get in to see my LLMD, so I suffered through them.
And I got busy again.
I got SO busy that I put Lyme Disease in my rear view mirror and I refused to look back.
Lyme Disease became a "bad word" to me. I wouldn't even say it. When my sister asked how I was doing, I'd tell her, "He who shall not be named... I don't talk about that anymore."
Was I wrong? Who can say? Looking back, I am sorry that I lost all my friends here. Part of that reason was my computer crashed and I couldn't access Flash.
For the first year I had LD, I got LOTS of help here on LymeNet. Then the next year and a half, I tried to give back. I came on nearly every single day and tried to help people.
I see your pain now. I've looked at the headlines. I've read a few and I'm flooded with anguish for you. I FEEL your pain. I do. I'm sorry you are suffering.
I just want you to know there is hope. You can get better.
During the 10-plus years that I've been gone, I got well enough to nearly kill myself working two jobs! Ha!
Yep, I worked as a writer for a newspaper all week long and then as a radio DJ on the weekends.
One year, I worked 7 days a week - with only 4 days off the entire year -- CRAZY! (I was saving money for my son's wedding.)
Anyways... I pray you find comfort in the words so generously given by those who frequent this great forum.
Old Friends - Hello, again. I am back. I got bit again (what are the odds?).
I have a new infection... Thankfully, I have a new LLMD. Thankfully, I knew more THIS time when they said "we don't have Lyme here."
But the more things change, the more they stay the same (not my original quote).
I STILL have to have days when I don't let Lyme Disease HAVE my entire life.
I am now 5 1/2 months in. I had to take an entire weekend OFF a couple of weeks ago. I had to tell my brain, "You will NOT think about Lyme Disease or how you feel this entire weekend. You will focus on OTHER things!"
And I did. And I felt better.
I'm sorry I had to go away and turn my back on Lyme Disease to get better.
If I hadn't been living in such denial, I would probably not have waited more than one day after being bitten again to seek treatment... STUPID. I am paying for that now... paying BIG Time! Health-wise and pocket-book-wise.
I am older now (obviously no wiser), and the fight may be harder.
But I have hope. I got healthy enough to live 10 years feeling well enough to work two jobs.
I don't advise that, though.
What I am advising is for you to "Have A Life."
Have a Life. Have a Laugh. Do something nice for yourself (and somebody else) every day.
I like listening to The Reach Approach videos. They remind me to be kind to me. They are soothing mindfulness-type videos with beautiful photos and soothing (Ok... and sexy) voices.
I also do 2 daily devotions. And I pray. And I celebrate ALL the good things... the right things... the blessings... the positive...
Lyme Disease is a big fat bully. And I hate bullies!
Be good to yourself. Pat yourself on the back for every step you take... You can get better.
Much Love, ChaZZie Mo (Previously known as MadButterfly, Chazmyn and Wryter)
Posts: 12 | From Alabama | Registered: Jun 2018
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Frequent Contributor (5K+ posts)
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I am so glad you had 10 great years and you give such good advice.
You will get through this second bout with Lyme.
"God is light. In Him there is no darkness." 1John 1:5 Posts: 5304 | From Illinois | Registered: Aug 2004
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