If it's one that doesn't - if you want to waste the energy, send them some info from here. If they still don't get it, then cut them out of your life right now.

Who needs all that negative energy?? The only thing you should be focusing on is trying to get better.

If it's someone under the same roof - you might have to sit them down, and explain to them, symptom by symptom, what you go through. Really explain about brain-fog, or mood swings, or the excruciating neck pain, or whatever it is that messes up a normal daily life.

Explain how one minute you can be fine, and the next minute down for the count, and how you need for them to recognize this for what it is - and HELP YOU with whatever needs to be done.

And if the house looks like he__, the laundry's not done, whatever - it's their problem, not yours. You're busy being sick right now, and are ENTITLED TO FEEL CRAPPY.

Hope this helps - it's pretty much what I had to do.

Welcome! I can relate to your situation, and I'm afraid that there is no one answer.

How well another person understands or is sympathetic to our predicament is a function of their basic nature and experience.

Before I became ill, there is no way I would have believed some of the symptoms I have now if someone else told me they had them. Because I had not experienced them, I was very limited in my ability to comprehend the many different types of pain and sensations one can get with lyme. I was also suspicious of malingerers and bullsh**ters.

I guess the universe didn't want me to stay that way, because now I'm just full of empathy since I've experienced so much more in the pain and discomfort department.

So, every person is going to respond differently to your situation. Some will be infinitely forgiving and accommodating; others will roll their eyes and write you off.

It's their karma (as it was mine), so just hold your head high and do what you need to do to get better, with or without them. Your family member is showing her personal limitations, which IMHO, is a blacker mark to have than limitation by disease.

This site/story has helped me, it made me cry, but I think it makes people think.
Hope it helps you too.
http://www.butyoudontlooksick.com/spoons.htm

Therefore I have done several things. I have stopped being a people pleaser. If I don't want to to whatever, I simply don't do it. I have stopped worrying that others will think I am a pain in the butt. I try very hard never to leave my "comfort zone" in terms of activity. When people come over and stay too long, I throw them out, phone calls same.

When people call to tell me long winded stories about their troubles, I often just get off the phone. It sounds harsh but I am sick and they are not. I have even told my children (all grown) that for now, they must learn to handle their problems without me. Their stress does me in completely.

When my children visit, they do everything, shop, cook and run errands. A brand new concept for us, since I have always killed myself doing all of those things for them. Intrestingly, they enjoy it and the group effort brings them together (who knew?).

It is a good lesson, particularly for somewhat spoiled children used to a mom who jumped at every opportunity to "fix" their problems.

Remember, we have a battle to win here and being the most popular person is not in the recipe for getting well.

This is our struggle not theirs and we can't change that.

harsh advice I know but I think necessary. Lyme disease changes everything. I speak my mind now far more than I used to and really try not to put up with a lot of BS I am too sick to cope with.

When we feel better, we will be nicer or maybe not. It doesn't matter. The main thing is to get well.

Here's what I am doing, which may sound a bit harsh, but for the time- being it is the only option I have. I am surrounding myself with people who are only part of the solution - not part of the problem.

And, I am doing this for my survival. Literally. It's a tragedy that it has taken a near-death experience with a Lyme complication for me to put down boundaries.

But perhaps this is one of the reasons that I have this wonderful disease. To learn what I am willing to put up with from other people and what I am able to give to others. At times I just haven't been very good about articulating what is acceptable and what isn't.

I am learning about my limited energy units. (Have you heard of the spoon story? If not, do a search here).

For example, I just set limits with my mother, MY OWN MOTHER! She is the person that I thought would be the most nurturing, loving and compassionate. However, I had to tell her that I could not be around her until she stops telling me how to be sick or how to get well (she thinks that it is best if I am out of bed and running around).

Even more confusing is that my dad passed away in Sept. and I feel like I should be there for my mother -- to comfort her, but I don't have anything left to give at this time. It is all about my survival.

I explained that the swelling in and around my brain is contributing to my symptoms and that stress exacerbates all of my symptoms. And because of my disease, I lack the skills to cope with the added stress.

I looked for a better article, but couldn't find it so I wanted to pass on a short paragraph that sums up some of the neuro stuff you may be experienceing:

Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients by
Marian Rissenberg PhD & Susan Chambers MD, The Lyme Times, Vol. 20, Jan-Mar 1998, pp. 29-32
"Patients with Lyme encephalopathy complain of problems with memory and concentration, word retrieval, confusion, problems with thinking, "mental fogginess", a decline in job performance, difficulty with calculations, directions, and judgment. Decreased initiative, manifest as difficulty getting started with or following through with projects is often noted. Mood disturbance is common with complaints of irritability, explosiveness or "a short fuse," sadness, hopelessness or guilt, increased anxiety or mood swings. Sleep disturbance is also common, and can present as initial, middle or terminal insomnia or some combination of these. Fatigue is universal. Headache is common, and of course joint and muscle pain. Increased sensitivity to light and noise, visual disturbance, and tingling in the extremities are also common.'"

By the way, since setting limits with my mother, she has been trying very hard and communicating by email. Its just enough for us right now. And we continue to tell eachother that we love one another.

Please don't misinterpret anything I just said. There is no one in the world more than my husband and children that I want a meaningful relationship with than my mom. But what I have come to realize is that her misunderstandings about this disease are about her. However, my recovery is about me. Hope some of that makes sense.

Be sure to look for TREEPATROL's newbie links, print off, and check off as you read the many links there .. will take months!

There is another thread on here recently. Do a screen by screen search for it ... lots of good info there too plus what you read above. Betty G., Iowa

I have noticed that either a person has this skill or they do not.

I came down sick the same time as another person at work. We were both dx with CFS. We have the same symptoms but mine are more intense.

I limited my contact with her because she doens't get it. Go figure.

She gets it in the sense that she can describe it much better than I can and in much more detail.

But, as far as feeling safe when I am around her...I don't.

I will not be able to stand up and have to lie down and she will be off and about and talking to people and taking her good old time getting back to me to take me home. I will tell her I need to go now. But, she still doesn't get it.

She is in her own little world and can only deal with what is going on with her.

She is not mean spirited. Just not connected.

I have given her and others the booklet: "But You Don't Look Sick". I have given her and others the article about the spoon theory.

I have given out PA LDA booklet on lyme disease.

I feel this things are good resources. But, getting the person or doc to read these is another story.

I also have given out Dr. Scott Taylor's report: Lyme Disease: The Disease of Ignorance.

And given my NP a lot of information which she didn't read. And loaned my primary doc and NP the DVD and audio by Dr. B and others.

I have handed out the special issue of Lyme Times with the guidelines in them.

It is a unique person who does get it and I am very thankful for them.

ON the other hand. I don't get it most of the time. I am still trying to figure out why I am OK one hour and not the next or several days and then down for several days or why there is not a pattern. IT would be great to know when my hearing is going to go out, when I am going to be light sensitive, when I am going to be strong enough to go for a walk and when I am not and how far I am going to be able to walk that day or sit upright.

You got to admit. It is a ticky situation and keeps us on our toes.

I think of how confused I was when I was a Deaf Ed major and I would be around someone who had their voice but not their hearing.

It wasn't an automatic adjustment to hear with my ears and then talk to them with my hands. I thought since they were able to voice I could voice back. Wrong!

At first I really wanted people to understand where I was coming from and would expend a lot of energy discussing and explaining about lyme. As time went on, I got tired of explaining my situation and trying to get people to understand. Bottom line....you can't 'make' another person do anything, so don't waste perfectly good energy trying.

If the person is open to learning more, then provide them with good info. If they don't believe you or challenge you or make you feel like you are second guessing yourself, it is best to stop spending time with these people - even if it is immediate family. You know you are sick and you don't need to defend that with anyone. As one of the other posters said, negative energy is so counterproductive....

I agree with Sue VG - some people just will not get it and I am closely tied to a few of them. But that can't impede my trying to get well - and the same for you.

Try not to waste negative energy.

The first step is to see if they are willing to learn or at least understand. If not, get them out of your life immediately.

I have basically disowned my mother when it comes to my lyme situation and various others due to the same. She of course, regardless of my diagnosis,

wanted me to take "Zoloft" for it all. Yep, that cures everything!

Just get them out of your life.

I expect nothing from anyone in my life that doesnt believe I have lyme. This includes my friends.

Tuba, I wish I had the answer for you. I have been ill a long time with misdiagnosis's for 15 years and other health issues so it is hard for my family to deal with yet another one. They truly have compasion burnout.

The first thing is are they open to reading or hearing about the disease of lyme? Are they willing to educate themselves inorder to understand? That is the first step I would think as others have said.

Unfortunately I cannot get my family past that first step especially my husband.

Recently I have tried a new thought pattern-"what would I do if I lived by myself?"--and I go about my day with that in mind--I refuse to pick up the kids and the husbands messes, dirty dishes, laundry, cups etc because if I lived alone they would not be there.

Needless to say my house is in disarray-so be it. I take care of myself first and foremost lately. I have found out through a lot of tears of hopelessness and anger that my husband is not going to change and wake up one morning and suddenly understand what I am going through and help me. He has his own deamons of depression to fight and those deamons make him the lazy person he is.

Unfortunately my children are in the middle of this-but at ages 16 and 11 they are old enough not only to help around the house but pick up after them selves.

I quit as of three days ago--call it a new years resolution.

As far as understanding, I come here, talk to my therapist, a lyme buddy on the phone or I watch tv and forget about it.

I finally realized the other day the energy I was spending to get them to listen and undetstand me was energy I could spend being quiet and restful allowing my body to heal.

You can lead a horse to water, but you cannot make them drink.

I wish you luck and do hope your family will understand you one day, I really do!

For years I thought I had married the laziest man alive. I could not understand the problem because my family has plenty of disfunction--but lazyness is not one. Long story short (I had untreated thyroid disease and that was diagnosed first) I finally figured out husband was sick. I kept sending him to doctors until we found the one that is treating him now. That doc then found my lyme and childrens lyme. I know I gave children lyme with breastmilk or through my body--but that is another story.

So did you know that if one person in a house has lyme others are more likely to get it? Some people think lyme can be passed sexually?

I would say lazy and depressed would be first signs of lyme. My husband credits me with saving his life (I'm blowing on my fingernails now). But seriously, if you study up you will see the lyme does cluster in families.

Any possiblity that your husband could have lyme?

Just a thought.

L