While I do find this venue supportive and full of information I really think I need some place to go. I'm finding myself getting more and more depressed as of late. I do feel better than I did a few months ago and I apparently look much better, or so I've been told. Not "you look great" but the "my god you looked so awful the last time I saw you, you must be much better now".
There are those who think the outside package tells it all. You all know it doesn't. The constant pain I have is crazy. I can't remember the last time I had no pain. I live with it so I can live.
But it seems as though my support system is lacking when I'm groomed properly. I get the ole' "why aren't you back to work"? "why don't you just find a new job"? "why can't you volunteer at the ball field"?
I am so much more teary as of late. Hate it. I live in RI.
Posted by sixgoofykids (Member # 11141) on :
Yeah, it's a blessing and a curse that we "look healthy."
I generally let my kids' coaches or the people in charge know that I look fine but have a serious illness, so cannot contribute much in the way of time. They have always understood. I haven't had to tell everyone, just those in charge.
When someone says you look good why aren't you working, tell them, yeah, you do .... but they don't SEE you on days where you are so sick you can't get out of bed.
You might also join us on Lyme chat ... there is a link here in General Support. We chat in real time and it's been good support for those of us who go there.
Posted by bejoy (Member # 11129) on :
Sorry you are having such a hard time. And yes, we understand here.
I want you to know that I am living without pain for the first time in my adult life, because of effective treatment. It is a new and different experience.
Treatment is hard, but you really can get better. There is a light at the end of this tunnel, and it's called health.
I discovered that using big words helped me explain lyme to people, especially when I "looked so good."
People got very quiet or very sympathetic, compared to telling them I had Lyme Disease.
You could probably tell them you have "Chronic Rheumatoid and Neuro Borreliosis," an antibiotic resistant case of arthritis and meningitis as a result of long term lyme disease.
But I know what you mean, the more stoic and courageous you are, the less respect you get for your courage.
Hang in there!
Posted by Lily (Member # 13158) on :
I just say, "Makeup can do wonders!"
Also, I've lost some weight this past 6 weeks of relapse. I've lost 15 pounds and look too thin. When someone says, "you've lost a lot of weight." I reply, "yea, not a diet I would recommend."
I usually get sincere smiles.
Lily
Posted by daise (Member # 13622) on :
Hi Peck,
Seems a lot of people think a lot of us have a prolonged flu, or something like that.
Some people are alarmed that I'm on disability.
I tell them my brain is sizzling from germs. With that, some people begin to understand.
Lyme has been called a lonely illness and one reason why is just what you wrote about.
You are not alone.
daise Posted by bettyg (Member # 6147) on :
peck,
we've all been there done that daily IF we venture out of the house.
people tell me i look great too; i tell them; "I'M A 24/7 CONSTRUCTION ZONE inside me." shuts them up for awhile.
at least you have your LYME FAMILY HERE; WE UNDERSTAND, SUPPORT, and provide education as we all go down this LONG lonely pathway. Posted by Peck (Member # 14526) on :
thank you.
Posted by Peck (Member # 14526) on :
thank you.
Posted by Lymetoo (Member # 743) on :
Hey there... hang in .. OK?? We love you!
Two people at church were telling one of our members what a great attitude he had in spite of so many health issues.
And I thought... yeah, his are VISIBLE health issues! Those of us who have invisible issues get no credit for being cheerful and plowing on through adversity.
I've done it for 30+ years. No one knows how ill I've really been all these years.
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)