I went through this too. My sister, who has had a long career in nursing, totally abandoned me and said vicious things to me. Before I got my diagnosis, we used to be close.

Of all the things ME/CFS has stolen from me, I think my respectability was one of the most painful losses. You don't realize how much the respect of others means until you completely lose it.

I have very little to do with anyone in my family and I live alone now. No one has set foot in my house but myself for many years now, and I only go out to shop for groceries and supplies or go to medical appointments.

Living like this is not a lifestyle choice as some might think. But I would rather be entirely alone than suffer the abuse of people who disrespect me.

You have to make your own decisions about these things, but I hope you don't give anyone the opportunity to continue abusing you if there is any way to avoid it. May you find peace of mind, my heart is with you.

OMG I am so sorry that it has gotten that bad for you! I was thinking about doing something similiar but even more extreme.. I stayed in bed for 3 days when I didn't really need to.. but honestly after the 3rd day I just couldn't take it anymore. I wanted to teach my husband that I AM sick and that at least if he can't except it, don't ask more of me.. but it didn't work.. and I also decided that it isn't fair to me or my life to be bed ridden on days that I can at least sit up! I also found that being in bed when I didn't need to be made me worse.. I need as much exercise as I can muster into my life.. otherwise I might as well just die.. and to be honest.. I have considered it.. I just don't know what to do anymore.. considering that divorce might be the only option.. can't even afford that to live on my own either.. but I am sure I could be much more functioning if I didn't have to do everything for him.. there is just too much.. no appreciation for the deed let alone what it takes for ME to do it.. but on top of that.. NEVER help from him when I need it.. I stopped asking.. and now I feel entirely abused and unloved.. I am learning to hate him honestly.. don't know what to do anymore.. I just dont

I think we have all been through having people think we're not sick. My son told me to stop feeling sorry for myself and get out of bed and do something. When I got a laptop, he said,"Oh good another reason to stay in bed."

My husband told me "I don't do sick people". If people weren't telling me it was my fault, they told me how to cure CFS. They know someone who said their neighbor/son/daughter/ changed their diet and was cured. One woman from church told me I needed to go to a gym and work out or swim. She said I had allowed myself to believe I can't do this so I have to do it.

She was very persistent to the point of being rude. I finally said if she mentioned it one more time I'd hang up. She did and I did.

In general people seem to be more aware of CFS as a real illness. It took my family a long time to accept the idea that CFS is real and that I have it.

My daughter said she believed when I stopped wearing make-up. My mom said it was when I stopped taking long showers every day. My brother-in-law said after watching me during the 4th of July celebrations at his house that I was definitely sick. He also said my husband paid no attention to me at all.

My brother and I went to talk to the director of the assisted living facility our mom lives in. He wanted to move mom to Vermont where I live from Pittsburgh where he and mom live.

He said to me, "I have a very busy schedule. You don't do anything so you have more time to spend with mom."

First of all, mom hasn't left the building she's in for five years. She's lived in Pittsburgh all her life. But, if her money ran out, she would go on medicaid and he has "issues" with medicaid. His issue is that someone might find out that his mother is on medicaid and his carefully crafted image of "perfection" might crack.

While we talked to the director I said that the reason I have so much free time is because I am in bed all day. She asked me why and I said I have CFS. She looked at my brother and asked him if he knew this. He said he did. I was exhausted by then so I excused myself and went back to mom's apartment.

She obviously gave my brother a snapshot of what I was living with. Maybe more of a slideshow. He dropped the idea of moving mom and has been much more understanding.

The thing that has bugged me for 14+ years now is these people know me well. They knew the healthy me. Why then do they think that one day I decided to spend my life in bed?

My husband and I have separate rooms. He moved out of our room 9 years ago. He will help me if I ask him for help. He says we are roommates and he is my caretaker. Not what I signed on for 42 years ago.

But he does support me and he has excellent health coverage. I've learned how to talk to him and when not to bother him. Every few months, I talk about hiring someone to clean the house. Next thing I know he's vacuuming up a storm. He doesn't dust but he vacuums thoroughly. He cleans the floor in the kitchen and hall. He takes the dogs out at night.

I just wish he was affectionate. But he has Asperger's Syndrome which is a personality disorder. If I want a hug I have to ask for one.

Can't your husband do some of the household chores? Can't he cook? Or microwave? From what you said, he can't take a hint. You have to be direct with him.

There are many pamphlets about CFS if you go to CFIDS.org. Most of them are free or very cheap. I send them to family members and they said it helped them understand CFS better.

You really can't expect someone to know what you're going through except people who are going through the same thing. That's why DS is here.

I am very grateful that my family finally accepted CFS and now support me with their love and phone calls. I have 3 kids; one in NJ, one in KS, and one in MD. The picture above my name is the one in NJ and his bride.

You know you are not lazy or faking or a liar. You have an illness that is accepted as very real by the CDC, SSA, and doctors and clinics worldwide.

My prayers are with you along with hugs and my now famous, energy darts.

I'm here for you if you want to send a message. I'm a nurturer by nature and have only my two dogs to spoil. They don't care what I have or that I stay in bed. They love me. They adore me. and they are always by my side.

Hugs
Vicki

Hey Vikki.. I love ya too! LOL I only wish my family was coming around.. but they aren't. Thing is that I never like house cleaning.. or cooking.. I liked my genealogy, visiting people, being a little nutty, writing poetry, stories, so much.. none of which I do anymore.. my family remembers that I hate to cook and clean and THAT'S WHY I'M LAZY. They don't take into account all the things I loved to do that I dont any more. They don't see me not showered for 2 weeks! They don't see me when I am pushing myself to do anything, and if they did, they only see me DOING it. Then I must be able to do it! It's crazy. My husband, he CLAIMS to have CFIDS. I doubt this, but my last marriage ended for lack of being able to go out and have fun.. he did while I was sleeping.. when I met this husband it was at work and because he said he had CFIDS. I felt understood. One of our first dates was to just snuggle up together. I don't know what happened over the years, but he clearly doesn't have it or just doesn't have any respect for what I go through. And I am sick of it.

You said: Can't your husband do some of the household chores? Can't he cook? Or microwave? From what you said, he can't take a hint. You have to be direct with him.

Getting him to just bring his dishes down so I don't have a super load of them is impossible.. it stinks in his room.. yep like you we have different rooms, except now he has taken over my room and its become storage. I either have to sleep in the bed with him or on the floor in another room. I choose the floor because frankly I can't stand to be around him anymore. His lack of concern for me and what I am going through has destroyed what I once felt for him. One day I asked him to help me bring in groceries. I was sooo exhausted from shopping.. he said no.. well he actually said "I'd rather not" and didn't budge. I wanted to just leave them in the car, but couldn't bring myself to waste all that money.. so I did it anyway.. and paid for it as you can imagine. Can he cook? LOL he expects me to make all the meals.. I don't and can't, but carry the burden every day of knowing that it's MY responsibility to do so, and that I AM A SLACKER if I don't. As for the microwave.. he can use it.. I have to tell him how long to use it for though. I am feeling like I have a child to care for and frankly I've had enough. I could just cry as I continue to watch my life go down the tubes.. AGAIN.. I have lost my career, a spouse I loved deeply, my children, my hobbies and everything I love.. and all this I did simply because I am lazy.. yet.. I am always the first one there to help IF I can muster even the smallest amount of energy to do so.. and I do come through some how.. and pay later.. but they don't care about that part.. honestly I don't even think I'm noticed.. I feel entirely invisible.. perhaps what I need to be looking into is more to do with the support group for codependence.. because honestly.. it seems my biggest issue is trying to please everyone EXCEPT myself. I'm sooo tired and so weak.. and I don't get to say so either.. my husband once told me that he didn't want to hear any more about my health issues.. that he is sick of hearing the same thing day after day. I asked him what he thinks its like for me? If you don't like hearing it how must it be to be me FEELING it? No comment.. didn't seem to care or change a thing. I have been so direct with him to no avail. It doesn't matter what I say.. I have been in such pain both physically and emotionally that I have had screaming matches trying to get through to him. I give up. I don't know how to live anymore.. I just can't take it. He has tainted his daughter against me saying that I was always at the hospital, that I'm a hypercondriac.. that relationship is ruined. He didn't like me getting support from my family because I was "bashing" him. So I stopped talking to them and found friendship in his brother.. now he has ruined that as well. He controls the money so badly that my meds and my basic needs are not all met.. and made it impossible for me to even leave him. I was disabled before we actually moved in and married. And even on disability then I had so much more to be proud of than I do now. He has even gone to the extent of making sure that what the law would give me as a widow that I would not get.. and what little he has alotted to me in the event of his death (he is 15 yrs my senior) is up for grabs by his daughter and he not only knows it but still has done nothing to rectify it. Look at all my posts. I'm chronically ill in a million different ways.. he claims to suffer from most of what I do as well.. oddly.. he cant be understanding.. and oddly he gets everything I have AFTER I have gotten it. My family.. similar to yours.. except they can't see it because they don't see me when I'm not on a good day. What can I say or do? I have debated ACTING sicker than I am.. but for what? To rob myself of a decent day? Right now my way of dealing with everything is that I will do what I want to do when I want to do it IF I want to. The only problem is that to keep the peace I still keep jumping to his every command.. Today he asked me to make him a sandwich for work.. btw.. he is working because HE WANTS TO.. he is retired and receives his pension.. If only I could do the same! I can only hope one day to get better.. until then.. I'm living in a hell I want to opt out of but can't find any way out. I don't think I'm in a good place right now.. I really don't.

By the way.. he goes out every day for at least one meal a day. Almost NEVER brings anything home for me. Says its a money issue but brings home a extra sandwich (because its cheap) for HIS lunch. He is unable to be in a real caring and nurturing relationship. Too self absorbed. Everything is about him and if I make it about me I'm a hypochondriac always complaining about something he is doing. But I ask you, do you just let this happen time and time again saying nothing? I just can't continue to live this way and I don't have a choice right now.