posted
Anyone else out there feeling more of a burden on their family than a member of it?
Just back from my Mom's house -- I went so my husband could "take a break from me" while I was gone. I was going to change the visit date, but he told me he really needed the break. From me.
After the day car trip to get there...Mom tells me all about how she's got so much other stuff to do & how burdened she is by having me.
See, I can no longer work or cont my school program, so I asked her to visit me every 1-2 months just so I had a change of scenery. (I can't get out much now.) This is too much to ask.
Of course, the upset by her comments caused my EBV to double-time on me - on top of the major herxing - and I slept about 3 of the 4 days anyhow.
Nonetheless, I apologized.
I arrive home to find a husband saying "Hi. I'm in the middle of a movie..."...as if I've not been gone at all.
Apparently, I'm over-sensitive.
I guess THE BIG BURDEN is back at home.
Feels like I'm the one suffering & everyone is so overwhelmed with having to deal with it. Um...what about ME???
I AM THE ONE WHO HAS BEEN SICK AND IN PAIN EVERY DAY FOR 8 YEARS! I'm the one who can't participate in society - socially or even to hold down a job.
I'm the one who's had their life stolen from them...who plans 3 days ahead for enough energy to go grocery shopping.
Someone - do tell - why doesn't that count for anything!?!?
Sorry to rant, but I'm just fed up with having to feel "so sorry that I'm so sick". I apologize everyday for it to someone (prof, boss, husband, friend, sibling, etc) ... I apologize for a disease I don't want, didn't go out and "get", & that I suffer from more than any one of these people.
Please, someone, enlighten me with how you deal with this!
Thanks, Cranky..and Still Sick
Posts: 11 | From Richmond VA | Registered: Oct 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
You deal with it like I did and do.
Come here and vent away.
To those of us who know exactly how you feel.
You are not a burden.
Maybe your health issues make others uncomfortable....
When people love you and they want to help you but they can't,
Sometimes they react differently then we think they should.
My family told me that they were "tired" of me being sick all the time.
I learned to come here to my friends for support.
I pray a lot.
I learned to let go and listen to myself and my feelings.
I didn't need anyone else to validate them.
Don't be sorry that you are unwell.
I hope that you have better days coming and that you
Feel better about yourself.
Sick or healthy, you are a special person.
Don't ever forget that or let someone else make you feel that way.
Sending prayers of support your way.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bettyg
Unregistered
posted
sick,
just replied to your PM to me; best wishes and hang in there.
come here FOR YOUR 23/7 SUPPORT ok; we understand and share in what is happening to you also.
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posted
Oh reading your post had tears in my eyes! You took the words right out of my mouth when you talk about having your life stolen, feeling like you aren't a part of normal society anymore, needing to plan events days in advance. I can relate 100%!!
For a very long time my husband didn't believe me or support me. It took me a long time to get his support. I don't even know what changed? I just know that I was persistant and kept talking to him to make him understand things. I made sure to explain to him many times that it isn't my fault. That I miss my old life.
I think for others it can be hard for them to see past the illness. They maybe forget that we didn't choose this. That we miss being normal. That we are suffering not only physically but emotionally.
I pray that your family turns around for you too! It took some time but it did happen. It's not perfect but it's a start.
In the mean time we are all here for you! (HUGS) Amy
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
ps-even though he supports me more now, I can not forget how I felt when he didn't. I don't excuse what he did at all. So I and I am sure many others here do understand how you feel! I still have many family members that don't support me. It's really not fair at all! Hang in there!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
quote:Originally posted by Geneal: [My family told me that they were "tired" of me being sick all the time. [/QB]
Really? You're tired of me being sick? Well, I happen to enjoy being sick--I live for being sick.
Geez, don't people think before they say or even imply things like that?
But I understand your feelings.
You should be able to turn to your family for support, not to be cut down and shoved off by them.
Would they treat you that way if you had cancer or diabetes or ALS?
Probaly not.
I heard part of a sermon over the weekend, where the pastor was talking about the world at the time Christ was born.
He said that people had no love for each other, even for their kids.
They'd sell their kids to the temple priests for sacrifice and not care.
If their kids got sick, they'd toss them outside and either wait till they got better or died, and it didn't matter which one happened.
When their old people got too old to work, they just cast them out and let them die.
Sounds an awful lot like the world today, doesn't it?
It is hard to deal with,, especially when you deal with it on a daily basis.
I remember last year when I was really sick all summer, my son kept saying, "Mommy is never going to get better."
And he said it like it was my fault.
now he was only 4, so I couldn't hold it against him.
But I know that attitude was the same with a lot of my friends and family.
That's why I love coming here when I have those days.
people here understand.
People here don't judge.
People here don't say you're pretending or it's all in your head.
Hang in there, and know taht we're here for you!!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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I am sorry for your family and their ignorance to this disease. My husband didn't believe me either. I think it was because they kept saying Fibro and Chronic Fatigue.
When I hopped up and went out of state for treatment was a changing point for me. I went to the Fibro and Fatigue center in Atlanta. They actually were the ones to determine I had Lyme.
I even tested positive on the WB. Soooo, to make a long story short, I started reading about the symptoms of lyme. My husband begins not feeling well, and I take him and my daughter to get a Lyme WB.
Guess what, they both have lyme. He helps me all the time now. I still feel like a burden though and cry sometimes thinking he and my daughter shouldn't have to live with a "sick" mother.
But, I would care for them, so it is only right for me to let them care for me. Of course no one else really understands me, but, I have given up caring.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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I am so sorry to here about your family. Support from people closest to you always means the most, but of course, their lack of support always hurts the most too.
Have you seen the post that gave info for your families on chronic illnesses? I think Melanie Reber posted it, but I can't remember where I saw it (sorry!)
It might help your family understand better. But until then, we'll all be here for you! (And after then too!)
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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posted
Thank you everyone for giving me your advice, peace, "I hear ya", etc.
I think I realized I hit a wall. Most of the time, I'm so positive. My husband told me he admired "your optimism the most" since I just try to get through every day and then I just try to get through the next. But, no one is perfect at being hit with this evil disease. I finally just lost it.
I guess we can't ask the others to relate. But, I wish we could.
I guess we can't ask them to know the pain. The exhaustion. The ache. The never-ending-ness.
My husband came home the day after I wrote this with a dozen roses for me. It was my last day of work the next day. He said, "I'm so proud of you. You made it." See - in December I was in the hospital. I was in grad school. I decided to try to make the semester. And, it just all ended for me...and, I made it. And he noticed that. And acknowledged the struggle.
Maybe I could summarize so much of what I've read...
No one knows this pain, these feelings, this hell.
For as much as they want to. For as much as they'd hate it, could they.
But, they love me. It's all I can ask
So Maybe We'll try... To meet in the middle. I'll try to recall 'normal' & they'll try to understand 'sick'.
It'll give us something to chat about, anyway.
Posts: 11 | From Richmond VA | Registered: Oct 2008
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