I think that all of us have, at times, felt that no one cares. People always say, "Ask for what you need," but they rarely come through for you, even when you ask. All I can say is that if you would have compassion on someone in your situation, there must be people like you out there somewhere. It's odd that we are all so sick and yet we manage to be here for each other. I wish I could "pop round for a cuppa" and be the friend that you need. Keep your eyes wide open. Mercy shows up where you least expect it. Much love.

I agree with triunfadora.
I wish I could "pop round for a cuppa" and be the friend that you need. Keep your eyes wide open. Mercy shows up where you least expect it. Much love. "
The others in your life "just don't get it". Many times it is because we just don't look sick.
I understand your feelings.
However, I just keeping believing that I need to keeping giving when I can, and the good karma will come back to me. Listed below is a favorite saying from a famous person.
The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well. - Ralph Waldo Emerson

I know how you feel. Sometimes I wonder if people are scared that if they help they will feel an obligation to keep helping and are frightened of some kind of commitment. Only my husband and one other family member helps....no one else. I guess you can ask people directly but it would be nice if they volunteered.

Talking of paying people to help, it might be worth employing someone to help if you can afford it. We are thinking of paying someone to clean or wash up for an hour or two a week. Any little thing would make a difference and it does not come with complicated emotional strings.

I've got plenty of people who are ready, willing, and able to help me out. Of course they expect to be well paid. A neighbor once offered to help me trim the pine branches away from the power wires, said he has no trouble doing things like that. He fussed around for a few hours sharpening his saw, cutting down stuff that was nowhere near the power lines...things I never asked him to do.

Then about a month later, he comes to my door with an invoice for $200. He never did touch the trees with limbs that were close to the power lines, the ones I showed him I needed cut. And he left debris strewn all over the place. I had similar problems with other neighbors here, so now I dodge people who offer to help me. They offer to help, then come back later asking for money...after doing a terrible job.

Local churches have offered to help several times, but nobody EVER showed up.

If I ever get too sick to fend for myself, I don't know what I will do. My family in NY just ridicule me when I tell them I'm sick...or change the subject without saying anything.

In all the years I've been sick, nobody has ever helped me in any way. I'm not looking for sympathy, just want to share so people with similar experiences won't feel that the world is somehow singling them out for abuse. It just seems like the people who want to actually help us are a very rare species of person. I've yet to find one.

I understand how you feel all too well and can relate to Richie too. I am alone and my 44yr old son doesn't get it either even though I just went through breast cancer treatments to boot.

I have come to accept this fact and maintain my own live and compassion for them and all of us that deal with this devastating illness. I have also learned to LOVE myself for the first time in my life due to illness. This has been the silver lining in the dark cloud of limitations.

I wish I could come and give you a Bug Hentle Hug and share my love and compassion with you and all of others here. Lord knows we all can use some TLC. I go through phases of feelings nag so alone, but it always passes. Especially if I look out the window and notice a bird or few, for here in Florida this time of year many birds are here or passing through. Seeing the stars at night or a full moon lifts my soul. Mother Nature is full of Grace that lends us the sweet company we desire. I know I am not alone in her bosom.

Blessings of serenity and Love

I mentioned my cleaning lady (Home Health Housekeeper) in my journal a couple weeks ago. She comes to me through the County Health Department. I'm not sure of the eligibility requirements and it probably varies, but it seems people with even minor disabilities receive these services here. The service isn't free, but the charge is based on income and medical expenses. My gal works here for one and a half hours per week and I pay $14 per month. Nobody ever seems to come forward to let you know what is available so you need to research what is available. We CFSers know all about that! I am so grateful to have her.

A lot depends on where you live. Here in Florida, services for the elderly and disabled are extremely limited. I've been through every imaginable government agency looking for help. I even had a social worker look into things for me, but she came up empty too.

What it comes down to is your church affiliation. If you're a member of a church with a lot of compassionate members, you'll get help. But if you don't belong to any local church denomination, you're on your own.

I've heard it's very different in the northeastern states. Florida and Mississippi are the worst.

Thank you all for sharing , if this doesn't sound too awful, your tales of similar lack of care has helped me feel better, I don't feel so singled out. I am really very saddened though that this is how it is for us all. Why oh why does it seem if i lied and said this was cancer the world would be on my doorstep with love care help hugs etc - why doesn't CFS/ME matter ? I can't accept it - its wrong

I have often thought the same thing. It's not that I want to have cancer. Believe me, I get that cancer is a bad deal, but if I had something that people understand, I would get support. I have walked with people who have cancer and I've seen the care they get. The level of compassion is typically so much greater, among friends and among medical professionals. Lord give me grace to understand more than to be understood. I hear your heart cry. It hurts. I know it. Much love.

You are not alone in feeling this lack of support. It seems to be universal.

I sometimes like to think that it's not so much that people are uncaring, but that they are so busy (as we all used to be) and they just don't REALLY understand the severity of our situations.

And then other times I like to think that for every dismissive or uncaring action a person demonstrates......that person will at some point in the future find themselves in a similar situation where they are on the receiving end of an uncaring or dismissive act.. What goes around comes around.

I feel for you, I feel how overwhelmed you are, I feel how hurt you are. We are all here to listen and understand. Don't ever apologize for rambling or ranting or expressing your pain. That is why we are here.

Fix yourself a cup of whatever warm drink you find comforting and suggle up and know that there are many of us who know exactly how you feel. You are not as alone as you think.

Warm hugs.

Yes. Canigetwell. I too understand what you're saying.
I know what Ritche's talking about too. If you belong to a
good religious group, they usually have a home visit/caring group
that visits and calls upon people. If your city has a council on
aging they sometimes offer peer support.
One time I had an upcoming eye surgery scheduled.
How will I drive there? Who will help me when I return home?
A few of my friends have disabilities. They don't drive. My
family lives further away and are always busy with their own
lives. So, I wrote down a few names of care givers off of
a bulletin board at the Health Food Store. i called one and
she took me to the appointment. I was grateful for her and
that I had some funds to hire her.
When I went to the local registry at the council on
aging, they wanted a 50.00 fee to see the names of
licensed care takers. I found that very 'not nice', so I
didn't use their services.
Like Genie says, I like to think that people are not
uncaring, but that they are so busy. I just feel I have to
be more resourceful and willing to reach out to whatever
possibilities there are where I live.

I do t get help either. I had cancer twice and got bare minimum help even with THAT, after having major surgery twice in six months.

I don't even get words. No one offers to help. No one offers to stop by. No one invites me to anything. When I've put out requests for help my mom showed up, picked up 1 bag of garbage, listed all the things I need to get done around the condo, and then left. Helpful. I'd be happy with words. I have fought alone for most of my life and I can continue to but it would be nice to hear someone actually cares I am fighting even if they don't take the time or energy to do anything.

Don't you just love it when people come into your home, knowing that you're very ill, and point out all the things that need doing around the house?

What kind of a person would do a cruel thing like that?...maybe somebody with the compassion of a vulture. I've had this happen many times. It's left me with a very low opinion of people in general.

They don't help in any way, they just point out all the things WE should be doing.