quote:Originally posted by sickmate: This question may sound strange, but after a decade of struggling and feeling worse than ever i just wanna know how do stand the whole madness of lyme?
I mean the combination of ignorant doctors, lack of money, constant pain, non-understanding family, having a totally unresearched, misunderstood illness, missing live, giving up your dreams and so on...?
I'll tell you what I do.
I REFUSE to deal with ignorant doctors! Period! If I accidentally find myself with such a doctor, I FIRE THEM!!! Problem solved.
Constant pain? Beyond pain medicine, I would echo Cozynana's suggestion to try to find something to take your mind elsewhere. Find a new hobby. Take a part-time job. Watch a movie. Read a book. etc.
Non-understanding family? EASY! Don't talk about Lyme with them. If they ask how your doing - say "FINE"! Problem solved.
Unresearched, misunderstood illness? Find the best LLMD you can and try different treatments under their direction until you find something that helps.
Missing life? Don't miss life! You're sick, not dead! PUSH THROUGH! Don't miss one minute that you don't absolutely have to.
Giving up your dreams? Don't do it! Keep your dreams and find new ones!
posted
I agree, don't mention lyme in front of family who don't care or understand. OR around ignorant, self-righteous docs either.
Pain, well I choose to go to a pain clinic. Surely, after seeing a myriad of docs you have at least one diagnosis the clinic will accept. If you have insurance they will want to accept you if they can. Money for them. My pain clinic has really helped my quality of life and I'm for one, grateful for their help. Whether they really believe my lyme is irrelevant.
I know it's hard, and there are dark times. But, for my children and to have any semblance of a life, I choose to keep pressing on. In the face of "you'll be in a wheelchair soon" so many times I can hear it in the back of my mind A LOT, I still choose to think I'll keep fighting to keep that from becoming a reality.
But, if it does, I won't give up. Why? I can't. My dd's both need a mom. My dh needs his wife. I need to still be here, just for me too. I refuse to let this hideous disease take me at this point. Now, that could change, but not at this time.
Keep fighting, and I wish you all the best!
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Well, I found that I couldn't control depressing paranoid anxious thoughts until I was able to control the inflammation in my brain.
That's why I posted suggestions to lymeboy to help him.
Now I can find joy in each day, even in some small way.
But sometimes people have to treat what is going on physically (inflammation, imbalances) before they can find that joy.
We are all affected in different ways by these infections.
I'm just thankful that I can afford to buy the herbs that help the inflammation.
I know that many people can't, and therefore they must suffer because the inflammation isn't being dealt with.
Also, I was way too sick to be with people. Now that is improving somewhat, but for years I couldn't do it. Didn't know what was wrong with me all of those years. Was told I had CFS.
There was no "pushing through" for me. That only made me worse. I had, and still have to some extent, "Post-Exerional Malaise", which is the hallmark of chronic fatigue syndrome. Any attempt to enjoy life leaves you messed up for days, sometimes weeks.
So, sometimes people are truly locked out of life because of this disease, especially if money is in small supply and they don't even know what is wrong with them. And maybe they don't have insurance and can't even afford to see a PCP.
This happens to people. This happened to me.
My situation is much better now, but I know for many peole it is not.
My heart goes out to them.
Posts: 1358 | From Midwest | Registered: Apr 2009
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