Irrespectively, it seems like it falls on deaf ears and/or I'm barraged with "you need to push yourself or tell it to a shrink, they're paid to listen to excuses." On the flip side, the shrinks tell me...you need to find the right med, it will make the somatic symptoms subside.

Why does Lyme get a half baked reception from those who are illerterate? If I had cancer or Leukemia, would I get the same apathy?

Many of us were very active before we got Lyme. To label or malign someone as lazy, unmotivated, or comfortible not moving on is unreasonable.

Pardon my lament but it seems like after 2.5 years, many have inexplicably grown weary of my Lyme plight.
 

I know exactly what you mean. I recently, just got accused by someone ON HERE of not being too sick because I am WORKING! Um .. hello... work= money for my medicine and feeding my kids. I HAVE no insurance.

My family does the same thing to me also lymelighter, I just don't know what to say anymore. I get told "oh just take your zoloft and you will be fine"., That has ended me in throwing my mother out of my own home.

We have to stand up for ourselves but in the same token not slap the hand that IS there for us.

Tough situation, been there, doen that, got the scars, still going through it.

The only thing I can think of is to come up with a million comebacks and hope we remember them.

Anyway, I found a job doing some transcribing. I download the jobsand type. I wanted the extra money to pay for stuff the insurance company isn't. But there are times I can't do this at all because the seizures come back and the dizziness.

No one can understand unless they've been through it. That's why we all come here, right?
 

I wish I had a good answer. In my case, maybe this is payback for all the times I had the thought of "malingerer" go through my head regarding others who looked fine but complained of aches and disabilities to which I could not relate. And those who took all sorts of pills for their problems yet appeared fine.

I am paying dearly for my former lack of empathy. I have all sorts of problems I simply could not conceptualize until they happened to me.

Because of this experience (lyme and a ruptured lumbar disk), I have revised my opinion of what percentage of the population is malingering and what percentage is truly ill. I now give people the benefit of the doubt. Too bad it has to happen to us before we do that.

Sue

Probiotics $8/month
Boosts immune system by replacing gut flora lost to abx

Theanine $13/month
Lowers anxiety levels

CoQ10 $17/month
Raises energy levels

Flaxseed $10/month
Clears brain fog

Sublingual B12 $12/month
Clears brain fog

Saventaro $35/month
Boosts immune system

Coptis $20/month
Herbal anti-bacterial, key ingredient in Dr. Zhang's remedies

Magnesium citrate/potassium/taurine $8/month
Just read Marnie's posts

High-strengh lecithin with phosphatidylcholine $9/month
REALLY helps the brain fog if you take 800-1000mg/day

N-acetyl cysteine $15/month
Speeds up toxin removal, supports liver, clears brain fog

I also take a bunch of abx and herbs, but these supplements helped a lot, and make holding down a job possible. All of them are easily googled, so you can research them and see if any hit the spot. Several are also discussed on Burrascano's Treatment Guidelines.
 

It Seems like I Am Always
Saying The Wrong Thing!

What can sometimes be even harder to bear than the illness itself, is feeling alone in the daily struggle and mourning of lifelong dreams. As pieces of oneself die off bit-by-bit, isolation consumes them when others refuse to affirm their pain.

By repeatedly trying to "cheer them up" and make them see the "bright side" you are not validating their pain, but instead saying, "I don't want to hear the truth" or "your losses don't matter." On the other hand, if you acknowledge their losses, they will no longer be compelled to gain your belief by having to explain their situation over and over again.

Resist the temptation to make a visual diagnosis by saying, "gee, you look you're feeling good today" or "hey, you must be doing well." They may look like they are feeling well, because there is joy in their face from seeing you; however, your comment will only make them realize they are alone in their battle, since you are evidently unaware of their insurmountable hurdles.

In other words, by rebutting their answers with, "But you LOOK good," your friend really hears, "But, I don't believe you, because you look fine to me." Instead try, "I am so glad to see you," "wow, I can't imagine what you go through, you are amazing!" "you look nice today," or "how can I pray for you?"

Encourage your loved one by affirming your trust in them, loving them and showing them that they are still just as valuable to you even if they can no longer do the things they used to do; your willingness to acknowledge their losses will give them the strength and positive attitude they need to fight the illness, instead of wasting their energy fighting with you to believe.

They are not seeking your pity or sympathy, they simply want your compassion; some will need your help, just listen, they will tell you how.

We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives which make our illnesses and injuries seem invisible to the naked eye.

Copy this and print it out for your friends and family to see. I made my son read it out loud to me.

Here is the website where I found this.
http://www.invisibledisabilities.com

Hang in there.

Maria

It's hard isn't it. It's hard to imagine what it's like to be running around in a healthy body, at full energy, full mental capacity. For me, I can't remember what it's like to not have pain.

Well, if it's so hard for us to imagine something we once experienced, imagine the opposite. Did you really have any idea your body could feel like this all the time?

I sure as heck didn't. I had no idea the amount of pain I could endure. I didn't know that my hands could look healthy, but feel completely gnarled up. I didn't know one day, my energy would just disappear.

Well, our friends and family can't really imagine it either. The best we can do is explain it in their terms: compare it to the flu, hangovers, sleepless nights, etc.

We can also all wear pins that say "I feel like (expletive here), thanks for asking."

I remind myself that I am just waiting for the end of this, when I get my energy back. NO ONE can say this is in my head, because I have been sick before, and well after. The only thing in my head is the worry that I won't get better enough.

I hope you all don't begin to doubt YOURSELVES after hearing all the naysayers. Lethargy and depression are even harder to quantify than Lyme, and we also tend to forget what well felt like! I am reminded of the time 2 years ago, when I sat at the bottom of a flight of stairs, almost in tears because I knew I didn't have the strength to climb them. I knew then that I was truly sick, not faking.

Fatigue sucks.

Regards,
Shaz
 

For those you aren't closely bonded to, just let them mouth off. The fact is, they don't really care one way or another. They don't want to hear it, and they don't believe it anyway. But pre-lyme we might not have either.
 

I purchased a booklet from her called But You Look Good.

The next obstacle is finding a way to get people to read it. It is a quick read and informative.

I was at a Bible STudy today. I used my power chair to get there....two blocks from my house. Stayed in the recliner in a reclining position while I was there. Told the group I had been very low functioning the past two days and was thankful I was able to make it there today.

I got up to sit at the table to eat a piece of cheese cake and the comment was made....

you say that you are having difficulty with mobility, but you are OK now.

It was not a mean comment. It just told me that it is difficult for others to understand this.

Because I was able to sit upright for 10 minutes after being reclined for over an hour people think I am normal.

They don't know that in probably about 10 more minutes I would not have been able to sit upright for much longer. And that now I am home. I have had to be lying down the rest of the day.

Getting the message across is difficult...But, I look good. Smile.

They are thinking normal. I would do the same if I hadn't experienced this first hand most likely.

I recall being at a meeting with a person with MS a long time ago. She said that her biggest problem was that she could last the hour for the meeting each week, but that was it. She didn't have the stamina to sit up for much longer.

I recall being puzzled because she didn't look sick and I didn't have a clue what that was like. It didn't make sense to me as a normal healthy person.

IT would be great if the media would get the issue across some how some way.

I am venting a little more here. If someone were to ask me to recall what was said at today's meeting, I would not be able to do it.

I was living in the moment due to cognitive skills.

I do recall one lady teasing the little boy with a tootsie roll pop. And him sitting on her lap eating that tootsie roll pop for a long time for such a small boy. I also learned that she does a bait and switch trick and not to trust her. HA!

[This message has been edited by kam (edited 04 May 2004).]
 

I am one of the lucky ones I guess.
My husband is 100% disabled but he too has some good and some bad days.

My best friend has FM, so she understands when I say "I hurt all over" or that "I'm having a bad day" She too says the same things to me.

I wish all of you could have someone who could understand how it is every min. of every day.

I thank God for my husband and my best-friend!

So in a way I have received many blessings from this terrible desiase.

Most of all, that I am not alone and that I have people around me who care and understand.

I wish and pray all of you will also find these bleasings too.

Bless You, Love,HH

Hey guys, we're all just to sexy for our disease. Gotta tone down that marvelous lyme-induced charisma and try to act like we're not enjoying ourselves.
 

My wife tries but often 'forgets' how I am, which is usually a cause for anger and upset. No one really knows what it's like unless you have it.
 

"I'm too sexy for my Lyme, too sexy for my Lyme, so sexy it hurts... "

Regards,
Shaz
 

I used to bristle at the 'you don't look sick' comments because these individuals obviously had no clue what I went thru on a daily basis. I felt like I had to defend my sickness - no really I'm sick! As time passed, I accepted what they said as a compliment - 'thank you', 'I appreciate that', 'how nice of you to think that'. It makes the other person feel good for saying something nice.

Sometimes people that aren't ill just cannot relate, and the situation may be awkward, so they say something about your appearance to say something. Am I making sense, or is it rambling lyme brain????

I make sure that when I go out in public, that I am put together reasonably well. I don't want people checking me over and saying 'geez she looks like hell'.

There will always be those idiots that think a chronically ill person is faking because they can't see the devestation that the illness causes. I don't have the time for them, and I basically avoid their stupidity by avoiding them. Chronic illnesses weed out the true friends/family from the fairweather people in our lives.

I just look for those teachable moments and spread the lyme message as I can.
cootiegirl
 

Until you experience this for your self it is very hard to understand. My husband has been great but I remember him making a comment a couple months ago.

He told me if my boss was stricter and I had to be on time for work I would get out my butt out of bed. I told him no, you do not get - If I had to be on time for work I would not have a job.

I am very fortunate that I have a wonderful boss who has put up with me missing numerous days of work and being 3 or 4 hours late every day for six years.

My relatives and friends do not understand either but I really do not care. I have enough to worry about and I cannot change their opinions. I just hope they never have to find the hard way what being ill feels like.
Stacey

So they get the picture that I am not "hunkie-dorie," I show them a picture
of me four years ago--pre-lyme/mcs. They
ask, "Oh what a lovely picture...who is
that?" Then, I say, "Me."

That is when the expression on their faces
changes. Now we can get down to brass tacks.
They understand that although "I look model-
slim, it is not by choice." They also
understand that a lot has changed, and I am
not a pysch case.

Works every time.