posted
I need to vent you guys..my Lyme buddies I hope you can understand..
I feel constantly judged and watched..I feel like my inlaws are constantly monitoring my symptoms and physical abilities...
I just want to be respected like everyone else and have privacy with my symptoms and illness. THey know I have not been well yes but how do I get my inlaws to back up a little bit and give me my privacy and respect that everyone deserves?
Just because I have been sick does not mean I am an open book. And I am allowed to not feel great with out needless worry of us plumeting into the depths of serious illness..
I just feel judged, labled, avoided, less than, and like a scapegoat....
please help you guys!!!love ya all
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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posted
just read my post and I sound like a basket case alright...lol...just started my cycle so perhaps that is the cause of the poor me feeling I have today...ughhhh....
well at least there is a reason...eh?
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi danella
I know how ya feel. family's are hard to deal with when your sick. Its either to much or too little.
My family's in denil. They don't like to talk about my lyme and usually don't want to hear anything about it. This is how they cope.
It bothered me for years. But now I know its too painful for them to think about it so they avoid it at all costs.
With the exception of my mom but then she'll get burned out after a while too and I don't like to worry her because she's getting up in years and has her own problems.
So I wish I had something better to say to make you feel better.
This is a great place to come & share your feelings no matter what they are. I hope someone with some in-laws can come along and give you some more in-sight.
Take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
daniella, I feel your pain and anger as I have and still going thru this stage of the game!
I lost my only sister, Mariyn, 41, 7 years ago to breast cancer in the liver. She was the cement who held our family of 5 siblings together.
I have 3 brothers left. Youngest lost his wife at age 40, yes, 40! of early-onset Alzheimer's disease after having this 8-14 years.
I helped youngest brother my managing for 3 years his LIFE TRUST investments so they would not lose everything if wife was in a nursing home for years on end. She was there 16.5 months and their 50% of the money was nearly gone when she did die.
So I felt this brother of all 3 would give ME MORAL support when he noticed things were not going well for me.
NONE of them acknowledged any of my health problems. BUT before my sister died, she died my husband privately when I wasn't home, "the family thinks it's all in her head"! I'm so glad I didn't hear that; I couldn't believe this coming from her with ALL THE PAIN IN HER LIVER area.
So thank you God, my husband has been here 24/7 to help me by his moral support and doing more around here than most males would do, etc!
For 5 years I couldn't go to grocery stores due to ALL CHEMICAL SMELLS: cigarette smoke on folks, HEAVY PERFUME/aftershave, hairspray, cleaning supplies, and some foods!
Somewhere last year, I attempted it, and it was ok as long as I avoid HUGE CROWDS; they it's the smells & PANIC ATTACKS!
But really got my goat was 2+ years ago when I got an email from oldest brother about a family reunion letter I'd sent with updted info.
1. I never hear from him so I knew it was bad news.
2. He wrote he didn't like the way I say things; 3. did things for my own agenda; 4. and DID NOT "CONTRIBUTE TO SOCIETY"!
To this day, we have NOT spoken other than hi/bye!
I've NOT gone to 2 family xmas sibling get togethers due to their, "this is be nice to Betty 1 day this year"! We don't talk entire year or more.
Also, I have to be:
. in dark, NO PERFUME/AFTERSHAVES/HAIR SPRAY, away cigarette smoke on clothing & there are 3 smokers, and NOW.....food allergies:
no sugar for my diabetes 2; wheat/rye; cow's milk, egg whites, cheese, garlic, etc!
Too many temptations and I didn't even mention all the candy they make! My will power is not that great, so best for me to stay home.
Do they call, write, or email? No way Jose! Sorry, I needed to vent also.
Daniella, so in a small way; I'm jealous that your inlaws show they DO CARE even though they do not understand.
How about a video on lyme disease? I haven't seen UNDER YOUR SKIN documentary clip that is posted here. I downloaded it, but couldn't find it anywhere later.
How about a user-friendly book for them to read on lyme:
THE SINGING FOREST, CONFRONTING LYME DISEASE, LYME DISEASE: Science, Laws, & Regulations, etc.
Do you have an actual support group you go to that in-law would go and LISTEN to what you all have to say? Just ideas rolling out of my mind. Best wishes, and thanks for posting for yourself and ME!
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posted
thanks betty. meg, and dana, I do feel that some people will never understand unless this happens to them(not wishing that were the case). But I do feel alone in my battle aside from fellow lymies on this fab board...
THank you guys..sorry betty g if you are jelous of my relatives!!! If it makes you feel any better my family was nonexistent when I first became sick and this lasted about 6-8 years...so I feel your pain there..hang tough..this is a journey for us....
I think I will look into joining a support group close to me..haven't had one in a while.... probably do me some good...
thanks again
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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This what people with lyme and chronic illness of any kind have to deal with, most people just cannot image being ill all the time,
They look at you and say to your face :
"you look ok"
"Its all in your head"
"Your Getting Lazy"
"You Just Like Being sick"
And there are many others, they do not realize how hurtfull there comments are, the stabing pain there words have caused us.
In an attempt to help them understand, I have said to them:
" Have you ever been so ill with the flu that you were bedridden for a day or 2, where It required all the energy you could muster just to get to the bathroom and back to bed, and then colapse in exhaution?
You could feel the flu comming on a few days before that severe colapse, yes you had your energy cut by 50% to 70% not able to work the a couple o days, then the worst hit and laid you flat in bed.
What you experiance for a day or 2 when the flu is at its worst is what I experiance for weeks and months on end.
The day or 2 of feeling really bad with a huge energy reduction, that caused you to miss work, prior to your being bedridden Is a good day for me. "
Most still no not get it, but the ones that do become friends of GOLD!
I also have found that the best and most understanding friends are the ones that have chronic illness, because they are going thru it.
Seek out those in your town that have chronic illness, and you will find a few to converse with, even if over the phone, iot will help you cope.
Hope these words help, Later Bruce
-------------------- CFS for 20 Years then found LYME the root cause! Am dealing with several viruses also. Posts: 89 | From Alliance Ne | Registered: May 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Daniella, It is difficult to find anyone with understanding and compassion for these diseases, so there is no reason to expect your inlaws to have it.
Unfortunately they are probably worried about their son and his life or future life..
My father in law was great but now gone..He had compassion for everyone but will not touch my mother in law..But let's just say she has never liked me..
I was not the perfect wife for her son, nor her choice. Well 27 years later she still feels this way.
My daughter, her granddaughter has the tick borne diseases and a bushel basket full of other things so I am sure it is my fault..I did not protect her enough or have not found the right dr yet..
I have gotten to the point of telling anyone the truth if they ask me..It is a hard pill to swallow but it might help save some lives because the ticks that did this certainly have relatives of many generations floating around the community, so it is in many bodies that are just time bombs.
Or perhaps your inlaws really do care...I just do not know when it comes to inlaws because my situation is jaded.
A dear friend gave me journals for Christmas..Perhaps that might help you and it you censure what you write, you could go thru your days and let them later read them.. Or maybe not, they might be able to use them against you and get you committed..Because who would believe all of the symptoms and hell that these diseases cause.
I do have a couple of great friends that are with me for the long haul but both of them admit that if they did not know and love me and see some of this that they would never believe it.
NOt sure that any of this is a help..Sorry..Good luck..lymemomtooo
[ 02. August 2006, 10:25 AM: Message edited by: lymemomtooo ]
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