Fight or Flight?

I had an altercation last night with my family. I am quite unwell due to it. What is worse, CFS or the stress it brings? I can't distinguish the 2.

My mother is semi wealthy. I had a long talk with her about making it so that her will leaves a lot of her money to me. By no means, not all of it. Just more than the half that she was giving my brother and myself. My brother is the only other sibling and living quite well with a $600,000 home, 2 BMW's, etc. His kids have everything and he spent $100,000 on kitchen renovations recently. If I was well, this would not even be a conversation. But because my medicines, rent, and all expenses are crushing, I am rightfully scared and not optimistic that I will meet a mate to "take" care of me and I don't necessarily want that anyway.

My mother told my brother that I am pressuring her to change the will. He freaked, called me and said that I will be fine and to stop pressuring her. I talked to her about it twice in one month. He doesn't NEED the money. What a web. My brother and I have no relationship. He refuses to accept my illness and even said he didn't want to be around someone who has an illness like AIDS. I cannot believe that she told my brother this, knowing how he is.. They are crazy. I have written a letter to both of them explaining my plight, how ill I am and how I have no real income other than disability. I have not been able to work!

My brother being a narcissistic bully, laid into me and even cried saying it is his money too. He makes close to $350,000 a year.

I don't understand.

I am unable to work, on disability, have medicare with no prescription coverage, I am sicker than I have ever been and they don't get it.

The biggest thing that bothers me and that is driving me crazy is not being heard. I feel like I am continually not being heard by anyone. My doctor who doesn't know what to do, my friends who can't understand why I am so sick right now, by everyone.

By my family who I have no "real" connection with. What is it like having that loving supportive family? What is it like having someone go and get your medicine when you are too sick? What is it like to have a mate who loves you no matter what? I want to know.

Since January I have had the flu. What feels like it. A cough, swollen glands and phlegm constantly. No answer. I have been unable to do anything. I have a ticket to see "Wicked" this weekend in NYC. I cannot go. $200 down the drain. I am too sick. I want to be able to call someone in my family and have them hear me, help me, be with me. I never ask for help ever, because the cost is too great and they have taught me to be self sufficient. But, I don't always want to be. I want someone to lean on.

I am so sad.

I try to have them hear me. I write letters. I get nowhere. I get yelled at. Talked over. I cannot speak because I am too weak to fight over their talking. I stay away only to try again when they come at me again. And again. My mother helps with my bills so I am dependent on her and she is dependent on me and is sure to let me know of all she has done.

However, she forgets to mention how she threw me out of the house when I was so sick. I had to live in a hotel for 4 days and move to Queens. All because of her drinking and insanity. I had a horrible infection from a root canal and it was upsetting her.

Will I be ok?

How do I not let this illness not turn me into a victim? I don't want to be that.

I am so sick. I don't know whether it's the CFS anymore or all of the losses that come with it. The constant never ending disappointment. I want someone to be here to hold my hand and tell me it will be ok. That I will be ok and if I ever move into HUD or section 8, I will be ok.

Is it so weak to want someone to hold your hand and tell you it will be ok? Why am I told by my family that that is wrong and that you have to deal with it alone. But I am expected to be there at any time of day or night for them. I have lived on my own for 12 years. No real support, a crazy mother who has the money but uses it as a controlling mechanism, saying yay or nay to what she deems a good doctor, treatment, etc. No "real" supportive boyfriend. Nada.

Woe is me, right? I hate this blog. This desperate blog of doom. But it is my reality. It is CFS and Fibro. It is my life.

Comments

Do not be afraid to accept help, particularly getting yourself into a place like I'm in. You will be amazed at how less stress you have and how much better your life will be. I wish I had known about this years ago, I would have moved into it and had a much better life. Get yourself on the waiting list and just do it. Don't wait until it is too late.

I understand all you have said. My relatives are very wealthy and have kicked me to the curb since I got sick. I even had one of them steal an inheritance that was supposed to go to me and my mother. He didn't need the money, he's got tons. He just wanted it.

In my family, if you are sick, disabled, can't keep up, you are an embarrassment to the family. You are something that must be shunned and hidden away. If you can no longer look like a fashion model and be successful, they want nothing to do with you. And then they throw it all on you and say that you will not comply with what they want. Like it's all your fault you got sick.

The only thing you can do is, try to get yourself into a situation where you don't need any of them at all. Get yourself into the low income housing, concentrate on getting on every program you can qualify for. The stress level goes way down. When you see that your rent and utilities are met every month and most of your food, really, it's so much less stress.

I get the same way you do, if people upset me, I get so physically ill and weak. That's why I keep to myself now.

You could try asking your mother is she would at least consider a life insurance policy for you, it's worth a try.
 
I guess my question is, I have some money in the bank. I don't think you can have money when you apply for HUD or Section 8, right? I am worried about later. Not now. I am in such a state, I am thinking about the future.

I never thought I would be as sick as I am now. And so because I am seeing myself progress illness wise, I am thinking that I will have to go in Section 8 later on.

I wonder what it is exactly that bothers me about that. I am in PA, like you and I have friends that are living in Section 8. They tell me these stories that are crazy about neighbors. Plus, I admit I think I am worried about the stigma. I feel like I have such a Scarlet Letter on me now, how will it be when I go into subsidised housing? I need to overcome this fear.

I can't believe how family is. I can't believe how ignorant they are and how they put blinders on. How greedy and ruthless people are.

I want to get away from them. I want nothing from them. One of the reasons I want that is because I don't want to be expected to be there for them when they are not for me. My mom helps me financially, but the price is steep.
 
You can have money and be in here. I still had somewhere between twenty two thousand and twenty eight thousand when I moved in. What they do is, they will force you to spend it down while you are in here if you want any help with other programs. They will also charge you a bit more in rent since you have money to burn. But not much more in rent, like twenty to fifty dollars more a month, it's nothing.

You do have to report any earned income to them here. They do get all up in your finances like that.

The smart thing to do, which I didn't get to do enough of cause I was too sick is to go the bank and stuff money away every month into a safety deposit box. Small amounts so they think you spent it down. They don't check and will never know. And you can have a small nest egg for emergencies.

Stigma and pride. You know what, my mother spent her entire life refusing to accept help, and we suffered to hell and back because of it. The truth is, those who accept the help live less stressful, happier lives than we ever did. And that just amazed me. No one in here is stressed out, they don't worry about much of anything except their health. People are calm. It's nothing like how I lived with my mother. She was always freaking out over how she would pay the car insurance or other bills. She was a stressed out nervous wreck. She didn't believe there was another way. And there is.

You need to simply change the way you think. Accept what is offered. Be thankful and grateful it is there. And you will see amazing changes in your life. We got sick, it's not our fault. The help is there for people who are like us and can't work. And I've found, most people don't even know what these apartment buildings are. They think they are normal expensive high rises. There is no stigma at all. I've even had repair guys come in here to fix my pc or deliver stuff or whatever and they always ask me how much the rent is because they think it's so nice here. Really, only other disabled people or their families know about these places.

Give up the pride and fear, they mean nothing. Really. All they do is hold you back. Go down, apply and get answers on how much money you have left and if you qualify right now because you will be amazed. You can earn about twenty five thousand a year and still qualify here and you can have money in the bank. And they will work with you. You can actually live here and set yourself up on a place like addoway with a storefront, make the extra money you need from home and have a better life than you have right now.

I just wish I still had that money left. I spent it down, had to. I needed the foodstamps back and I will be getting the medicaid back soon.

I've been there and back with the family thing. They said they would help me only if I went to school or worked. And they didn't care that I'm not well enough. So when I couldn't do what they wanted, they cut me off. I've been called it. They said I was faking the illness. They said I was that fat lazy cousin that doesn't want to work. Let's see, my tax dollars go to pay for you to sit on your ass. There are people out there with real and far worse diseases, so shut up and stop pretending you have one. Yeah, that's just some of what I was told. Embarrassment to the family. Failure in life, and they liked to throw in that I am very mentally ill and have "illness beliefs". They might as well be related to Wessely and Reeves. I just wait for them to get theirs some day. Their health will not hold out forever. My fantasy is to have them sick, kick them in the butt and tell them they are faking it. What goes around comes around.

I think what you need to do is realize that you are no longer a part of their world and you don't want to be. You see them for what they are. That is part of having this disease. The real blinders are off and we see the world how it really is. You have to make a new life for yourself without all that. And you can. It's not as scary as it seems.
 
Spitfire, your mum's money is hers, and she will do what she wants with it. it would be wiser that you don't feel entitled to have it. Your mum may also die in another 20 years- we usually don't know until the very end. Should you get a chunk of it, be thankful.

Surround yourself with positive thinking, positive people.
Things will move in that direction too. Simple laws of attraction.

hugs, Kati
 
First, thanks for sharing your experience here, in doing this you are helping all of us, PW- ME CFS and their carers, families and friends.

Before I became ill with this, I would have sided with your mother. Now that I am ill however I understand that desperate need for independence and respect as an adult.

I recognise that while I was well I was able to earn peoples trust and respect, as a worker, a partner and a parent.

I am grateful for my disease for one thing, it gave me the emotional understanding I needed to support my daughter. She now struggles to make her mark in the world as a worker, a partner and a mother, all while battling many of the symptoms that point towards CFS.

I worry that it is my respect that she works so hard to achieve. Before I was ill I would not have experienced the depths of admiration and respect I have for her.

Before I became ill, I would have expected that she would be able to do all these things in her stride as I once had.

Only my experience of this disease has changed me from a 'driven driver' to a 'supported supporter', from a member of the 'pull yourself together brigade' to a whining whimpering wreck begging for antibitotics, bio-medical research, vitamins, supplements, understanding and money.



I can do little more than sprinkle sparkly magic fairy dust everywhere, and ask you to close your eyes and try to imagine how you would feel with a magical healing hug from a warm soft squishy angel.

If that don't work, I heartily recommend telling your mother that you cleaned the toilet with her toothbrush when you were little.

Love and hugs.
 
To kati,

I don't feel entitled to have it. This is not something I want to have a talk with my mother about. I would much rather be working and not need her money or anyones. And you are right, it is for her to spend how she wishes.

Part of what I was writing which I think you failed to see, was not all about my mother, but how a brother who is clearly not in need, doesn't hear me, ask how I am or even believe that I am sick. He sits in a glass house and truly believes that he is "entitled" to it. My brother is a millionaire.

This is not about greed, this is about illness and fears and what it is like being ill with no income.
 
From each according to their ability, to each according to their need; Karl Marx, he got a bad rep.

It's how we distribute resources in our family and we seem to have avoided a command economy and gulags, so far.
 
Spitfire. I am so sorry you are in such a bad situation. Also so sorry you got a rotten brother who can't do any better than think about himself. All I wanted to say in the end, is that you can't change that, and if you try, I suspect it will be in vain. (((hugs)))
 
Kati makes a good point. If your family member was selfish and insensitive BEFORE you got sick, it is unlikely they will become unselfish and empathetic now. Probably the opposite. We all have found that not many people "get it" because unlike some other diseases, we don't have blood coming out of our ears or other visible manifestations of the war going on inside our bodies...so people tend to dismiss the idea that we really are, really sick. Can you find a support group near you with other people who already understand? I've found my best source of information and comfort are other current and former patients of my doctor, and people on forums like this.
 
The support groups in my area are a joke. They don't even know what a probiotic is. They serve soda and potato chips at meetings. This is a good resource and daily strength on the net.

I agree. My family will never change. I need the serenity prayer right now.

My brother had a heart attack over the summer and he acts like he has this awful affliction. No surgery, no meds needed. He is back to work and fine and says all the time "I have a heart condition." My illness is not as pertinent as his, in his mind, even though I feel like I am dying. He is very much alive and well....sort of anyway! Mentally..that is questionable.
 
wow, your brother is a millionaire and doesnt help you out? thats hard. what a callous person. does he even stay in touch with you or are you the one who is staying in contact?
however, i know how family can stress out someone with cfs , i dont have a very supportive family either.
 
I think your brother is mixing money up with 'love' or 'worth' or 'importance'. In which case, he is a pretty un-evolved individual, and it is your duty to feel sorry for him :D ;)

Take any help that offers itself, but don't waste energy (we have little enough to spare) on trying to get blood from a stone.

May your good days grow.
 
Thank you! My brother has always put value on THINGS. What you own, wear, have. He told me I was a loser once because I don't own a condo. I still live in an apartment. He is callous. QUITE. HE says that he should have the money because he is his father's son. It's bullshit. I know him, and it's so that he can buy a home in Bethany beach, Delaware.

He is not in my life and I like it that way. He makes my illness so much worse. I have no reserves for his behavior. The only time we see eachother or talk is at Christmas and when my mom is in the hospital. We come together for that.

I can't stand him and have no plans on being in his life in the future. After my mom is gone. NONE. I plan on sailing away! Possibly moving.
 
My family does not really understand my illness either. I am currently self sufficient and my family is not in a postion to help me monetarily, so that is not an issue, cannot get blood from a stone.
 

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