So I've seen a few posts about people whose families and./or spouses don't get it, and are not understaning... is anyone else here totally alone because of no understandng? My parents and sister stopped speaking to me in 2001 just a few months after my dx. My husband left me in Jan 08 because he ws tired of living with a sick person and having more responsibilty.
I am struggling so hard being alone. I have a few people who come in for short time and help me, but I can barely walk to the bathroom and every time I have to go, I put it off as long as I can b/c I'm scared of falling down and not being able to get help. I bring a phone with me, but it's still scary.
2 of the people who come I am paying, because I'm desperrate but I don't have $ to afford that on disability. I give one my cc when she runs my errands, and I have her put groceries and gas for herself and her family on it for her pay since I have no cash. She jus set me up with somoene eles who is coming in, and they have aberter worked out so I will just pay the one person extra to cover the other. I don't know what else to do, but I'm going to run out of credit and haven't even been able to stgart treatment yet which will be expeneisve.
What do you do when everyone abandons you????? I really believe that if I jut had enough support, I could get weelll... I thiknk my body is so overloaded with stress being alone and helpless that it is keeping me from healing.
Jenni~
Posts: 18 | From Charleston, SC | Registered: Oct 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
jenni - so sorry for what you must endure alone. The organization below might be of some help to you.
Thinking of you and sending positive thoughts your way.
Posts: 2380 | From New England | Registered: Aug 2011
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
jenni...
Not sure if I read your post right. My brain is not clear.
But, I have someone who comes from the county for an hour a week and is paid by the county.
When I first came down sick I lived in another state adn was provided 4 hrs a day ehlp by the county.
So, it depends on what county you live in and how much they get for funding to help others.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
gosh, i am so so sorry you are so alone that is just awful!
it is hard enough being so sick and having a supportive husband... i couldn't make it without him.
im just so sorry you are in this position. its not fair Posts: 442 | From usa | Registered: Oct 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Jenni Bunnies...I like your moniker...so cute. It must be very difficult to walk this road by yourself.
I am sure that you have tried your very best in everything and it just didn't work out with your family no fault of your own...so sorry.
It is hard to have friends when you are so sick. I don't know, but some churches have outreach for home-bound persons...don't know if you have the energy or if there is such around you.
It is so upsetting to hear about how some of our members get such shoddy treatment and so sad that one can't help much but type in a few encouraging words and try to support you that way...but it seems so lacking.
I can pray for you though, if you would like...we have had answered prayer here before...so if you would like, I can certainly do that.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I am SOOOO alone,,,,
the mice all packed up and moved away!!!
ALONE is good, you will get used to it all too soon.
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
Sometimes it is better to be alone than with someone who doesn't care.
Look at it this way. You can watch what shows you want, eat what you want, come and go as you please, wear what you want, lots of advantages. My single sister wouldn't get married again for anything
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I'm someone who needs people around, so I feel for you jenni. It is tragic and sad to feel abandoned by those who should care most.
Look into your county or state services... you could possibly have someone visit & help for free. When my son was born very premature we had a PT from our county services who came weekly for 2 years. Part of the reason she was so wonderful was because she understood my situation. We became friends and now, 4 years later, we are still in close touch. Even if a health aid or social worker isn't lyme literate, at least they understand chronic health problems.
About 2 years ago I started reading A LOT. I always have a book to lose myself in. Although I'm not alone, it helps my mind rest when I can't calm my thoughts. If you're physically able to read it could be a good way to escape some of the loneliness.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I tried to download the application for the above web site but my computer will not do pdf files for some reason.
I will write when able to request an app.
There are times when I think it is not good to be this sick and alone.
but, most of the time...it helps my health..even when the caregiver comes once a week for an hour, it takes a lot out of me.
Did I say this all ready??
There are times when I think it would be fun if Don came and visited..hint..hint
But, then I know that my health is not reliable and he could come all this way only to sit in the front room by himself as I tried to cope in my bedroom next to the computer.
Conversations take a lot out of me too...to the point that my brain starts to hurt and it is as if the words are bouncing off of my brain leaving rock like attacks.
Then, the cobwebs in the brain and hours of recovery.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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![[Frown]](frown.gif)
that is just awful!
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