It has taken years now for me to understand how it is just not possible for those outside the disease to comprehend the agony of living within the illness.

If one has not experienced a headache, for example, then hearing someone say...oh I have the worst headache....doesn't really mean much.

One can feel sympathy knowing that the other is in discomfort....but there is no real knowing, no visceral understanding.

Some people are really bad at imagining and sympathizing.

And that is only part of the hardship.

Those who live with us, who are lucky to be disease free, suffer from the loss of the relationship as it once was. The anger over that is often directed at the diseased.

When the anger is directed at the disease, then there can be some comeraderie in fighting it.

But still, disease is stressful. It wears down even the strongest relationships.

My husband has been on a rollercoaster of coping, just as I have been. Sometimes he's there for me, and sometimes I'm abandoned.

This morning I received an email from him, and it made me cry. Altho I am pained by the devastation LD has brought to our lives, that it has ruined his as well as mine, I sometimes feel unsympathetic to his ordeal. After all, he is not diseased, and able to do most anything he wants.

I just wanted to share his email with you.
I know how lucky I am that he is here with me. And I know how important it is that we all provide love and support to each other, for many just do not have it at home.

---------------------------------------------

Disease has a dastardly impact on everyone involved, and it is so helpful to share honestly.

This has caused upheavel in our household,
and I encourage my kids to go over friends'
houses, do things to get away from the
"sickness."

Thankfully, my mom has friends in her
retirement village, where they have dinner
and play cards weekly. I have taken a toll
on her and my dad is deceased; I am her
only child.

My children depend on her as well, and my
husband is a good father if not a compassionate soul. It is life.

Few of my family members outside my immediate
family understand the devastating effects
of this illness. They all attribute this
to depression...and who wouldn't be depressed
with this horrendous illness for years on
end, roller coaster rides and free falls?

Steve, LYME-Vic-toria`s OLDMAN

I do not get much support at home or anywhere really except at my doc, therapist and here. I found myself with a gun in my hand a few nights ago wanting the pain to just stop--lucky for me I prayed instead and walked back home and put the gun away.--scared the whole family though, just the way I felt at the time.

I have been ill and in chronic pain now for 16 years with over 40 docs missing the correct diagnosis--now on abx IV treatment and herxing bad and to them it is mom is just sick again what else is new--this is whole new ball game--at least it is for me.

Thanks for sharing your hope

It took me getting SICK to realize what I knew all along- the idiot I was with ( and still stuck with, and I do mean STUCK) never gave a flying crap about me.

I was just thinking this last night- wouldnt he do EVERYTHING AND ANYTHING in his power to help out, comfort, etc the woman that he LOST? I mean this disease took my brain, laughter, memory, happiness..

and he shook it off as if it were nothing but bad luck. I laid in bed and suffered, literally suffered while he watched.

I probably would have died had it not been for my sister Sherry who took care of me and my best friend Charlene who said HEY, sounds like you have lyme!!!

NOW DONT get me wrong- I have three kids, ALL disabled and when I went down, I didnt have to open my mouth a bit- he did for those kids, period. Never cleaned- but thats besides the point. Well kinda- my sister would have to come over just to wash their school clothes. Ok, so pretty much, he fed and bathed them

but thats the most important.

Other than that, he left me to rot.

And thats the only reason that idiot is still with me today- because of my kids. I know as long as he is there, they are being fed, they are being loved ( which he DOES loev those kids, trust me) and getting bathed, etc.

Other than that, he can go to hell and I surely hope he does.

He tells me Im a horrible mother, I herx too much, Im always byatchy- to "take a pill", etc.

And just about two days ago, I think he said the most intellectual thing that saved him from being Satan, and instead made him somewhat a man.

He said": I KNOW you are sick, but you dont understand I AM NOT. He then further said- and if it weren't from these kids? I wouldnt be here.

Only time hes been honest in three years.

And that's really how it has been for me as well. He's so good at taking care of "things", when I do feel abandoned, I tend to feel a little guilty as well, as I know other people suffer so much more.

But what I do know is that people do what they know how to do. So after many years, I understand he cares even when he doesn't know how to show it in ways I need to feel it.

My heart goes out to those who are in situations which bring such deep emotional distress.