Then am I compelled to EXPLAIN? I am not expecting anyone tyo tell me what to do. Screaming suffices now. I just wonder if I am alone here?

But at least they are asking and concerned about your health. I have some "so called" friends who choose to ignore the fact that I have this, and want to pretend I'm fine. They DO NOT ask me how I'm feeling.

In fact one "so called" friend (and I use the term loosely) rolls her eyes if I even bring up the subject of Lyme Disease.

Look on the bright side.... they care enough to ask

Hope you feel better,
Lisi

Everyone at work knows that.........

and they still ask anyway!!!!!!!

I think they know I feel good when I'm smiling.

"Oh, he'll feel better when it gets warmer, or sunnier, or stops raining etc.

Like the weather is the solution! Duh - its a bacteria!

Thanks for every single reply.

(....I punched her)

I AM NOT SURE WHICH IS WORSE--HOW ARE YOU FEELING OR WELL, YOU LOOK REALLY GOOD.

I THINK THE ONLY PEOPLE THAT UNDERSTAND ARE THE LLMD'S.

THAT INCLUDES FRIENDS AND FAMILY--WHO DON'T STILL QUITE GET IT.

I AM NOT SURE WHICH IS WORSE--HOW ARE YOU FEELING OR WELL, YOU LOOK REALLY GOOD.

OMG!!! I don't know what's worse either! Toady I got the whole you look good thing. It's sooo anoying. Its' like what's that suppossed to mean, I'm faking it or...I'm depressed cause i think I look like crap and if someone says I look good, it will solve my lyme? I don't know what to say to that, I smile and it makes me uncomfortable. Each day sucks some days, suckier, others less sucky!My chem teacher made me write a test today. It was supposed to be tomorrow, But he was like you look good today! well guess what, i flunked it cause happened to fell EXTREMELY sick cognitively!!
Frustrated
Lynn

One day I was so tired of it and screamed: Ask me again in 2 years! I had to repeat this for some more days but now she isn't asking anymore. What a relief.

Now I used this recipe also for other people. Nobody is asking me anymore. Which is a pity because nowadays there are days where I could answer: pretty good!

Gabrielle

It's as good as it gets right now.

I just had to ask.. did you really punch her? I laughed at that. I'm so evil.

When it's really bad (i.e., yesterday), the girls at my office will bend over backwards to take most of my calls, go get my lunch, help me out, ask if I am feeling better.

When I am having a "good head day," my worst problem really is only being really tired, so I have to gently remind people, "I know I look like I'm OK, but I DO have Lyme disease so even though I look fine, I am NOT quite as fine as everyone seems to think."

It is so frustrating to have to explain to people all the time because unless they have experienced this nightmare called lyme themselves, they have no idea at all.

I am currently on abx for lyme, was undiagnosed for two years and have serious neurological damage. Even when I showed my family the positive Western Blot from Igenex, they had no idea what it meant to me or what a struggle it was just to find a doctor who would listen and start treatment.

So now when they say "You've been on treatment for a few months now, why aren't you fine?" or "I thought lyme was cured with antibiotics?" or "So, are you ready to go back to work soon?" I say that some days are good and some days are bad. This is going to take a long time.

Yes, punching them sounds like a great idea, if I had the strength to do it!!

Here are the ones I hate the most.

Ran into someone who used to be my personal trainer for pilates until about a year ago. He was well aware of what was going on with me. Ran into him earlier this week and he just says... "how are you feeling"... good?

How the heck are you supposed to answer that? I felt like saying...Oh yes... I feel just wonderful. That's why you haven't seen me in the gym in an eon and why you still see me sitting on my rear end right now.

In reality, I just said .. "fine".

Or... someone, who I guess is a fairly good friend, who told me a couple of months ago... "enjoy it while you can". Now, I know I should have asked her what she meant by that, but I just said nothing. It made me feel that she thought I was enjoying all this. Yes, I enjoy pain, being poked and prodded and spending the money that I saved over the last 20 years on doctors and body workers. I JUST LOVE IT!!! Wouldn't anyone???

This disease is bad enough without being treated like you have an imaginary disease, or you have some kind of unresolved psychological problem.

Many times, I have wished I had something else that people had heard of, even if it was potentially fatal. Why? Because either traditional medicine would fix it, or you would die. Either way, it would be over.

I guess I understand these folks in a way. I wouldn't have believed that a body could react this way, had I not personally experienced it.

There is a woman at my daughter's dance studio who was talking about sarcoidosis and Lyme, because one of her friends was sick. I confided in her a little about being sick with Lyme.

Six months later she asked me how I was doing and if I was any better, and I said some days are good, some are bad.

To tell you the truth, I was extremely touched by her question. It's pretty lonely at times feeling like this, with noone knowing, and although I don't want to tell that many people, it was kind of nice to have someone ask about it.

Then there is my mother. After Thanksgiving when I was a total basket case, too weak to sit up for a whole meal, she didn't call for weeks. Then one morning she called in an adsurdly cheerful voice chirping "how is everything, what's new". I told her I didn't have enough energy to do anything new. She asked why and I reminded her that I have Lyme disease. She replied "oh I thought you would be over that by now.

I asked her if she found it odd that I couldn't sit up in a chair at Thanksgiving and could barely complete simple tasks. She changed the subject.

Some friends have been great, others launch into this whole thing about I feel so bad for you, it's so unfair, I could never cope if it happened to me....

I wish they would just ask me in a concerned way "how is it going, can I help out in any way".

I won't punch anyone because the ones I want to punch are as dense as a brick wall. I don't need a knuckle injury on top of everything else.

Well I guess I should be glad I look ok, even if I feel like crap.

"It's a roller coaster ride, and I can't get off..."
OR
"The treatment makes me feel worse, and since I feel worse I guess that means I'm getting better."

However, right after I was diagnosed & went to my inlaws for Christmas --- AAAAAhhh!!

My father-in-law (who likes to irritate me for the sport of it) said:

"You just have too many doctors, and are on too many medications. Just take an aspirin a day for your heart and you'll feel better."

Then a couple of days later -- I think it was during Christmas Eve dinner he asked:

"Do you just stay sick because you need the attention?"

At that point I took a deep breath and said,
"Yeah, you're probably right. I think maybe this is all PSYCHOsomatic; I think I'll stop taking all my meds and MOVE IN WITH YOU and let your home be my private SANITORIUM!"

Surprisingly, he left me alone after that. (Of course everyone at the dinner table was giving him a dirty look, so that helped.)

ALSO, when I first told my dear socialite sister-in-law about my diagnosis, she said:

"Now, you'll eventually die from this, right?"

Apparently they don't cover the correct etiquette for speaking with someone who is chronically ill in her Southern Living magazine.

I just told her I was just starting to read up on it, and I hadn't gotten that far in the book!

Fortunately no one has said anything that stupid to me during a Lyme rage. I might not be responsible for my actions!

The only time I get annoyed is when the person then proceeds to tell me how I might become antibiotic resistant, how antibiotics are bad for you, ect.

My reply probably isn't too nice, but this is a prime example of people - even those who have Lyme's Disease - who clearly don't understand what we have to deal with!

[This message has been edited by NCLymie (edited 11 June 2005).]

Well since I had just had a baby and a two year old son-could bearly walk and had bell's palsey and extreme pain- I KNEW IWASN"T GOING TO FEEL BETTER THE NEXT MORNING.
I am now better than I was;and, he understands a little bit more.Whew-guess I still had a little pent up anger there. ~jackie

Now I just say...not good today....or okay today. I have found in my 34 yr journey, that most folks do not really care..that could include family. They do not even want to know what Lyme is or read stuff I use to send them.

Another thing I hear that irks me is, "We do not have ticks here"!!! I have even heard that from ducks in KY. Watch out folks...the ticks are a coming...OYE

Other than being a "lonely" disease...those two things irk me the most.

It happens.

We had some prayers at Church (I am Greek Orthodox) translated into English.

The translator, a Greek, was to translate the Greek "awe filled day of Christ" into English.

He made the mistake of assuming the past tense of 'filled with awe' was 'awful' (full of awe). HA!

Our books then said, "the awful day of Christ".

quote:

---

Originally posted by perplexed:
What really irks me the most is that most folks do not even know what Lyme disease is? If I am having a really bad day, week or weeks, my patience is short, and I do not feel like explaining about Lyme.

Now I just say...not good today....or okay today. I have found in my 34 yr journey, that most folks do not really care..that could include family. They do not even want to know what Lyme is or read stuff I use to send them.

Another thing I hear that irks me is, "We do not have ticks here"!!! I have even heard that from ducks in KY. Watch out folks...the ticks are a coming...OYE

Other than being a "lonely" disease...those two things irk me the most.

Jean

---

I didnt. I admit that I was ignorant of it.

Unless you are personally affected with a disease (or know someone who is) chances are you know very little about it.

I think that's sufficient for most people who may just be asking as a means of a light greeting and really don't care.
But when a doctor asks him, I'd prefer he be a bit more specific! LOL

There is one woman at church though, who annoys me because she is battling her cancer not with chemo or radiation, but with "healthy eating" and she is on a mission to convince everyone that the answer to any illness is in avoiding processed foods, flour and sugar!

Golly,with this Lyme I think I have a leather skin now and could care less what people say or think about the
way I'm suppose to feel or look or act.

Obviously I'm having a bad day. I could care less what people think, but when I am asking for advice, I'd like to get good advice, not "you need to exercise". That's like someone telling me to brush my teeth.

I do think she meant well and I don't mean to birate her, however, it's an example of the lack of knowledge people have about peristent Lyme. We need to educate people

I feel great!!!

Then I go to bed. At 3 in the afternoon.

Or better yet I fall asleep in front of them.
Then they ask whats wrong.

Then I say absolutlly nothing and close my eyes.

Then they just think Im plain crazy!!!!

The only time they said "boy you look sick"
was when I had my BIAXIN herx. I turned white as a ghost and had black under my eyes.