Could people please share the following? It would really help me, and I'm sure it will help others.
What it is like to have Lyme and cos? Daily life. How hard it is to make it through a day, a minute, a second.
Can you explain how it feels to be doubted, especially by loved ones.
Can you explain why we HAVE to do our own research and why we aren't Cyberchondriacs? (Yeah, that's apparently a real term--people who are hypochondriacs and go to the Internet to research and diagnose themselves)
Why we need groups like lymenet for support--not as a symptom of being a cyberchondriac.
Why it can take years to treat.
Please. The more responses the better. I'm out of ways to explain all this and am tired.
Thanks so much.
Posted by Robin123 (Member # 9197) on :
I first prefer to explain it in simple terms, what it is, so they get a picture of what's going on.
Like it's a bacterial infection - a spiral-shaped bacterium, similar to the one that causes syphilis (heard of that one? Know anything about syphilis? I like to start asking my listeners, to engage them, even with something they may have heard about)
It gets into the brain early on and starts to inflame the brain and spinal cord and throws off most body systems.
It also corkscrews into tissue everywhere and inflames it, depending on where it goes. So people can have symptoms anywhere.
It depletes our body of magnesium, which is needed for energy and over 300 enzymes.
It's usually invisible until it impacts enough of our system to become visible in some ways, in later stages.
So any short little explanational phrases like the above are helpful.
Then I usually ask if they have any questions about this, about its functioning, what it can do in the body?
And listen to their response - are they engaged with me or not? Maybe they have some immediate questions, like can pets get this, is this contagious, all the usual questions.
Also be ready with short explanational phrases for the co-infections. Babesia is a prozotoan; it gets into red blood cells and causes profound fatigue. Etc for bart, ehrlichia.
Why this situation is going on - one answer is that insurance companies don't like to pay for care - doctors stand down on telling people or treating - we have to find those who do.
It's a different situation going on than readily recognized and permitted-to-treat conditions. So we go online for answers very often. So we go to support groups.
I don't like labels for behavior. Our behavior is hopefully fulfilling a need. Cyberchondriac is not fair to throw at you. You are trying to meet your needs. We have a right to engage in activities to try to help ourselves.
[ 03-15-2016, 11:16 PM: Message edited by: Robin123 ]
Posted by Blymey919 (Member # 47424) on :
The website "Tired of Lyme" helped me find some words to explain things.
me, I'm sorry, but some people do NOT want to hear! There are some who will refuse to hear any explanations you give. Their minds are made up.
You will need to save yourself and just keep away from them as much as possible.
We have some people like that in our lives. The more we tried to explain the dumb and dumber the stories were that went 'round. So we gave up and stopped trying to tell them anything.
There are others in our lives who do want to know and are listening. So find those people and surround yourself with the ones who are supportive.
Its sad, but there are some who will never understand until its them with Lyme.
Posted by me (Member # 45475) on :
Thank you for the responses and resources.
I'd really appreciate input from other members if you have a chance.
Posted by me (Member # 45475) on :
Bump
Posted by LisaK (Member # 41384) on :
that one I read recently was a good description to me :
having lyme feels like waking up evvery day with the worst influenza AND the worst hangover you'ce ever had.
that is how I feel jsut about every day of life.
24/7 ringin in my ears, people get mad becasue I ask them to repeat themselves
24/7pain in every joint and muscle in my body- to the point now I might die from joy if I was ever pain free.
wish this wsan't so: everyone tellin gyou how you look so good.
people not asking or caring to find out how you really feel
people laughing when you say that everyone has lyme (becasue they probably do)
taking extra extra extra long to write things on the computer that used to take minutes.
I can barely write anything by hand any more
having nothing to eat at a party becasue all they serve is pizza and beer or wine or cake or ice cream or al lthe food you can't eat!!!!!!!!!!!! UGH
I could go on forever
Posted by LisaK (Member # 41384) on :
we have to simply be our own researchers becasue 99% of drs are all taught LIES in school and / or never taught what really matters for healing.
I tell everyone I can that the tests are faulty and the CDC only keeps them becasue they make money off f of it.
it all doesn't matter. no one will listen or HEAR what we say unless they want to - are ready to.. so I just keep yelling in their faces if I feel like it and so what.
no one really cares anyway. they all have their own lives.
they will care when it's too late for them. and that is going to be history. there is no hope. there is no future. that is how I see it. sorry to say. but I do live a productive , fun filled life whenever i get the chance. some day d you cry and others you laugh, jsut like real life.
Posted by me (Member # 45475) on :
Thanks so much, LisaK and all who have responded. Any and all input is appreciated.