Who do you live with

Discussion in 'Fibromyalgia Main Forum' started by Iamnotmyillness, Feb 6, 2007.

  1. Iamnotmyillness

    Iamnotmyillness New Member

    I had to move back in with my parents 2 years ago at the age of 38. I am still waiting on my disability appeal. This has been a really difficult transition because my mother and I have very different opinions on this subject. I feel that if someone is ill, its a family's job to come together to help if they can, and that I would do that for her if the situations were reversed. Since I dont have a husband there is no one else to rely on. Let me add that she well has the resources to help me out -- her net worth is close to 2Million$ and the basement which she didnt use before is finished, so its now a separate living space for the most part.

    She feels like she has done this enourmous thing that no other mother has ever done and that I should basically worship at her feet for taking me in when I had no other options.

    So I am feeling pretty down about everything, especially since she wont pay for medical or anything social which makes it pretty much a comfortable prison cell with no pain management.

    Which leads to my question(s) -- What is everyone else in a serious flare doing to live independantly while waiting for disability? Do most of you have a spouse who is willing and able to be the sole breadwinner? Have you moved in with relatives? have you moved in with friends? Were you able to get your case expedited? Did you have enough savings to ride the tide until you felt better? I am curious if I am just this big loser who has to live with her parents because she failed at life or if its fairly common among people with FM or CFS/ME to have to return to the proverbial nest?

    I will add that I had my first symptoms when I was about 24 and this is my third major flare (not a few days here and there but a persistant situation) It seems like just when I get out of the financial hole and am starting to build something I get sick again, so I have never really had the chance to get a solid cushion under myself and being single means one income.

    I guess I am hoping to be able to show my mother that others are in the same boat.

  2. elliespad

    elliespad Member

    You are right. You arenotyourillness. These DD are potentially severely dibilitating. I have been unable to work since 1989. If it were not for my husband supporting me (us), I would be living on the streets, or dead, or my college bound children feeling obligated to try and support me. I have no parents, but my mother became disabled young, and died at age 62. I moved her from Florida to NY to take care of HER. This was an HONOR to be able to serve her this way. She was the kindest, most loving, supportive mother and would have done that and MORE for me. She was THE MOST GIVING person I have ever known.

    Hopefully your mom will never be in a position to have to rely on someone else for basic needs.
  3. Iamnotmyillness

    Iamnotmyillness New Member

    I finally found out that I could get food stamps and it will be six months until they process the medical request. I live in Michigan and the system is really backlogged. It doesnt look like I will get any cash directly because I dont have "expenses" since I have a roof over my head and my utilities covered.

    I just wonder how everyone else manages.

    And I think its criminal that I have to apply for a handout when I PAID into an insurance system that the government mandated I pay into to cover any potential disability. Two YEARS+ to get a hearing but they got money to people fraudulently applying for Katrina benefits to the tune of 300 Mil. But thats another topic, eh?

    And thanks Elliespad. thats how I feel to. My mother took care of her mother who had undiagnosed FM (I have looked at her old medical books and based on what she underlined, it could have been done by me) So her mother wasnt a burden but her daughter is.

    [This Message was Edited on 02/06/2007]
  4. LongStruggle

    LongStruggle Guest

    I have had CFS for about 18 years, but only since Septmeber have I not been able to function. I've been on medical leave from work. In January I was able to go back to work for 2 weeks, but then I got the flu and I have relapsed and still have not made it back to work yet.

    My dad gave me some money, but that won't last long. Since I have good credit I did transer balances on my credit cards and now use credit cards with no interest for 14 months. I haven't even applied for disability yet because I need to first have a doctor who will support me. My chiropractors have been the ones who have helped me all these years, but I know disability is not going to recognize them. I also still hope I'm going to get back to work.

    I wish I could live with my dad, but he is 85 years old and is living in a small apt. He sold his house a few years ago and moved to the same city as one of my brothers.

    So, therefore I don't know what I'm going to do if I can't get back to work. Right now I'm trying to get an appt to see Dr. Cheney.
  5. LongStruggle

    LongStruggle Guest

    I'm sorry that you have to deal with your mother who is not supportive; that is not a good situation for you.

    Family members can be a real pain. My brother who lives in the same city as my dad is not supportive at all of my CFS. He thinks it is all in my head and I should just push myself to go to work. Of course he knows nothing about CFS. He just thinks he does. My other brother isn't as bad, but he gives the impression that I can control what's happening to me. It has been hard for me knowing that my dad is 85 and my only family support and he won't be around forever. Thank God for my best friend.
  6. ksl25

    ksl25 New Member

    hi,

    i didn't read this whole thread because i should really be in bed.
    i've been really fatigued lately.

    AND i had a bad breakdown today. I cried for a good bit, I am so tired of doing things on my own. i called a friend and felt better afterwards. she is like my sponsor at AA. seriously, talk it out, cry it out, pray, pray and pray, whatever you u need to do to feel better. i have to keep reminding myself to count my blessings for the job that i have and the friends that i have. (even if they can't come over to do my laundry, cook, or clean LOL)
    best of luck to you and may you have all the support you need to get on your own again.
  7. pw7575

    pw7575 New Member

    My boyfriend and I have lived together since before I became ill with CFS. I still work but part time from home so he is going to be the one making most of the money.

    HOWEVER...a month into my illness things were not good. I was VERY sick. My parents were soooo worried that they had been begging me to come live with them. They felt helpless and my mom wanted to take care of me. So I did.

    I went to live with them for 5 months while the doctors tried to figure out what was wrong with me. The entire time I lived there my parents did not have me pay for anything. My health insurance covered the medical bills etc. so I was ok with that but if I needed it they would have paid for meds and bills too.

    I tried to give them money for living there (I had a chunk of money in my savings that I was living off of) and they wouldn't hear of it. They never made me feel like an inconvenience or like I owed them anything or that they were doing some saintly thing that I should worship them for.

    Anyhow, once I was doing better and got a diagnosis I moved back home with my boyfriend.

    My point is that YOU ARE NOT A LOSER! There are plenty of people here who do or did live with their parents or family since becoming ill. So there are others in your same boat and you can tell your mother so.

    Don't feel like a failure because you are not. No one asked for these illnesses. You can't blame yourself.

    Try to get disability. That way you will have some money to work with and may even be able to move out of your mothers house. You shouldn't have to live in pain and it is sad that your mother isn't helping you. Family should be supportive but unfortunately that is not always the case.

    Sorry this is insanely long! I will stop now.

    Take Care,
    Pam
    [This Message was Edited on 02/06/2007]
  8. monicaz49

    monicaz49 New Member

    I had a nice apartment, a bmw, a college education and ft job. Now...its all gone.
    I am at my moms house.
  9. Iamnotmyillness

    Iamnotmyillness New Member

    WOW well its too bad to see so many of you all in the same boat, but at the same time its sort of a relief that its not just me. Monica I hope your mom is being more supportive than mine!! And I cant remember the log in, but to the previous poster that is waiting for the docs on the disability issue, my advice is dont wait. They will almost automatically turn you down the first time and there is a lengthy wait in almost every state from what I have read. that gives you plenty of time before your appeal. Every day you wait you lose money because they will only go back one year for your onset date and a lot of times from what I have researched if they approve you at appeal they give you a partially favorable, which means you get your benefits but only part of the back benefits that you missed out on while you waited to see the judge.

    As for here, my mother's kick is that if I ate more apples (or whatever food happens to be on her mind at the moment) then I would be better so its all my fault. I finally told her to a. stop talking to me like I am a five year old who doesnt want to clean her plate and b. if an apple a day truly cured FM on the one hand I doubt that so many people would be suffering because they would all just be eating apples and on the other hand our country has the worst diet in the modern world and yet most people who eat badly do not have FM. I have given up coffee, soda, sweets, etc., no my diet isnt perfect but that isnt the reason I have FM. And I am so miserable all of the time that its frustrating to have her repeatedly pull crap out of Women's Day magazine about some lame "cure" for "beating fatigue" so that she can start pontificating on why I am sick....if only you would....its like I have this little tiny bit of fuel left in the tank and I am wasting it going over old ground with her.

    If I had a dollar for every time I have sat down with her and tried to explain that fatigue is not fatigue, I could afford the best medical care in the world. before I got sick I was a fundraiser/event coordinator. I worked a good 50 hours plus and then usually volunteered locally for candidates and what not another 20 hours or more a week. At the end of the week I would be tired in that good -- I accomplished something -- kind of way. Now I am sometimes tired just from going up and down the stairs to do a load of laundry and I try so desperately to explain that what I feel is exhaustion not just "being tired" but she just doesnt get it.

    And the worst part is that the only thing that was helping was getting a massage once a week -- it didnt keep the pain away entirely but it took the edge off so I could do something with the week. She pulled that away about 3 months ago because she wants to retile the kitchen. I am baffled that this woman thinks she is the epitome of what it means to be maternal. What mother denies her daughter medical treatment in lieu of tile for her kitchen while meanwhile she's eatting steak and dropping 10 bucks at the bakery? I dont have kids, but I do have pets and I would never buy luxuries for myself while they didnt have what they needed. In fact, my dog's bed got damaged in the move and I couldnt afford another one, so I gave her the 75$ featherbed from my own bed and went without so she would be comfortable. (I waited for a sale and got a great deal on a new one for myself, but not many dogs sleep on goose down!! LOL) I know some people would probably think I sound entitled and I admit that I am being a little whiny and a lot long winded tonight, but if I thought I was taking anything away from her or my father in the slightest I would never even ask let alone expect the help.

    Anyway I am babbling now, its just been a rough couple of months. Like I said, this is my third bad relapse coming after I would say almost five years of having little to no symptoms. I know I beat this again with the right health care but honestly I dont think I have a prayer of accomplishing anything good with my health until I am on my own again. Sadder still, I am an only child and my parents are elderly, so in the end all the stuff that she is accumulating just for the sake of accumulating it will end up being mine. If my appeal doesnt go well, then I am stuck until she passes and then I'll have all the resources I need. But then I will have wasted all this time when she could have afforded to help me and she will have missed out on enjoying the love and support of a healthy daughter in her later years, one who, if healthy would be in a better position to help her and my father if and when they really need it.
  10. suzette1954

    suzette1954 New Member

    I am blessed with a husband who has stood beside me the whole way. I had to leave work 2 yrs before getting my SSDI. We had to cut back on everything but I was blessed to marry a man who only pays cash for everything so I was sort of used to only buying what we can afford.

    Tell your Mom that you are not the only one in this situation. There are many here who have been in the situation you find yourself in. Some of them have lost their house and car and jobs and even spouses and many have parents who dont understand. I have a 22 yr old son who continually makes fun of me and says he wishes he could fake being sick and stay home and take naps every day while his dad goes to work everyday.

    We understand how you feel. Im glad you have somewhere to stay while you are so sick, but Im sorry you dont seem to have anyone on your side. Thats what we are here for.

    Suzette
  11. Mini4Me

    Mini4Me New Member

    I got these DD later in life, thank god, and finally had to quit working last summer at the age of 56. I've been a life-long worker, and had paid quite a bit into soc. sec., so my disability isn't too bad. (I also get state disability because I was a teacher).

    My inability to work has changed our lives economically as well as in tons of other ways, but at the moment we are doing well in spite of it all. My grown daughter is living with us temporarily and paying rent while she decides where she wants to settle and work. She works full time here, it's just not what she wants to do the rest of her life.

    I would take her in in a heartbeat (rent-free) if she were to become sick and unable to work. I really worry that she'll get fibro one day, but I hope she didn't get the bad gene!
    Best of luck...
    Mini
  12. AllWXRider

    AllWXRider New Member

    It makes things hard, since I "look" so healthy.

    I'm too tired to work an 8 hour day. Take two naps a day.

    It gets worse during my chelation cycles...then I get extra tired and brain fog is horrible.
  13. moab341

    moab341 New Member

    Hi all,

    Boy...reading this makes me realize how I am not alone in this struggle, and that we really are survivors and do whatever we have to.
    We fight every single day just to make it through, and only someone else in the same sitch understands.

    This board is full of strong people in a bad place fighting to find answers and relief. ((((((((((hugs)))))))))) to each and every one of you!!!!

    I love alone. My boyfriend thatI was going to marry left me last Thursday suddenly. He didn't know if he could handle my illness. To me, that's a lame excuse, but if he can't, he can't.

    Living alone forces me to get up every day and go to work. Of course there are those days that I just can't, and I had to apply for FMLA, but I have only used it once.
    I don't get paid when I use it, but it protects my position.

    I was only diagnosed 3 months ago and had to educate myself about FM.
    I can see now that I've had it for several years, but the symptoms got worse with time.
    I don't want to get any worse and pray I don't.

    I have hope this new Doc I see the 26th will be able to help me.

    Wishing each and everyone of you hope and relief and some peace of mind...we need to believe that someday we will all be better than we are right now.
  14. froggyfog

    froggyfog New Member

    I'm still semi-working at this point....bascially I have been having to use my FMLA which is almost gone. My husband today said "he didn't know what he was going to do with me" WHAT DOES THAT MEAN??? I asked him if he still loved me(we have been having problems lately) and he said "yes, I still love you". I know he doesn't understand about this disease and he is so money oriented that I'm not sure we will make it if I file for disablity. We have so many bills we are barely making it now...Sorry...I'm off on my own topic here......

    Anyway, maybe your mom is scared or doesn't believe you are really sick. Try printing her some FM material from the Mayo Clinic since it is a respected hospital. Just like this is not something you wanted to have she maybe feeling the same way and thinks if she ignores it(FM) then it will go away. I would try talking to her after you give her a chance to read the material. Make sure you talk calmly and tell her how much you care for her and how it makes you feel....she may not realize its a problem.
  15. ayhatch

    ayhatch New Member

    I don't know what I'll do if my husband and I split, which is where we seem to be headed. We have two young kids and I am also awaiting disability. Even with that, I'll need financial support and health insurance. You are lucky you have a place to live and resources...though they seem to come with a price (it's not guilt free).
  16. fungirl2100

    fungirl2100 New Member

    It's hard enough having a chronic condition which makes one endure great pain, but to have no support to go along with it is incredibly difficult. I cannot convey to you how apologetic I am that this is the cards you were dealt.
    I by no means live a glamourous life. I live with my husband. We have a Great Dane Puppy & 2 cats. That's our little family. My husband is supportive of me. My familymy mom is the only one I have told about my illness. I did try to tell my best friend since high school, but she wants nothing to do with me since I cannot keep our little lunch dates.

    I work full time as the Asstn't OPS Manager at the small company I work for. I constantly worry since the economy is what it is..horrible how long I will have my job. I carry both my husband & my insurance. God forbid anything happens to my job or that I cannot work. I am the primary breadwinner.

    My husband is pretty much done with med school one more major hurdle & than it's his Residency. Which means I will see even less of him. Right now he is working shifts here and there, but we have huge debt & a big old mortgage.

    Money is tight & his family has tons of it, but nobody really helps. My mom is a widow & has heart problems. She has helped out in the past. I love her dearly, though she doesn't quite get how sick I am.

    I look good, but feel horrible. I am sure that fits many of us.

    I am thankful for what I do have though & hearing your story rips my heart to shreds. I wish I could help somehow. Gosh, we even have a spare bedroom. I'm a total stranger I know, but I really feel for you.

    Please take care & we (I) am here for you.

    your friend,
    Dawn
  17. lookingoutthewindow

    lookingoutthewindow New Member

    I don't mean you should be beholding, but thankful. I am 44 and have no parents. My siblings are not supportive and don't understand. Along with FM I have had 2 cervical spine operations in one year, so of course I could not work and when I returned I worked part time. I have a supportive boss, good insurance and FMLA. After my first operation I had to get a loan to make the bills for the time out of work. I am still dipping in this account and don't know what I will do when it runs out. I would like to sell my house and move in with someone, but there is no one.

    My pregnant 21 year old with, no job, no car and no driver's license moved in 3 months ago because she had no where to go. She doesn't understand why I can't take off work to take her to appointments. I see a GP, Nuerologist, Neurosurgeon and dermatologist on a regular basis and can't take off any more time. She is a help around the house, but I can barely get up some days. She needs more support than I am able to give.

    I can't even get excited about my first grandchild. Some times I feel she is ungrateful. Furthermore, I get on my pitty potty and say "Why me?". I am trying to change my attitude and be grateful.

    I will try harder to understand if you will. We can do it!

    Hold my Hand,

    Johnna
  18. Iamnotmyillness

    Iamnotmyillness New Member

    You all made me cry!! I just dont understand why outsiders think this is easy or made up. Why in the hell would anyone choose this?? I am always baffled by that attitude, especially from those of you who mentioned getting that from siblings. If you have almost any other illness, you get sympathy, so for some faking it gets them attention. Fibro patients get all the bad side of the illness and then on top of it we get ridiculed, scorned, abandoned, and harangued by friends, family and co-workers when we cant live up to their expectations. Again, why would ANYONE make this up.

    A few of you mentioned living with boyfriends and things are rocky. I went through this before I moved in with my folks. Ironically, when he first told his friends that he was breaking off the relationship because I was sick, his friends all gave him grief. Then he said it was because I gained weight. Same reaction. Then it turned into I was argumentative and bitchy but he didnt want to say that...so the story morphed until I was the bad guy. But the kicker was he told me he "wished he could wave a magic wand and make me well" so that he could stay with me. I laughed. My response -- so you want me to get well and then take vows with you where I promise to stay with you no matter what? My father had a stroke 20 years ago, I know what that committment means. So I am suppose to promise that if you get hit by a bus and are paralyzed or you have a stroke and cant speak, I get to be your caregiver and do for you knowing that you wouldnt do 1/10th of the same for me?" he just stood there looking like an idiot and all I could think of was how did I not see how undeserving of me this guy truly was. I look at it as honestly the only blessing that has come out of this illness and I hope those of you that are finding out while the guy is just a BF can look at it this way too.

    As for those of you that are married, I feel for you. I go back to my view of my mother -- did they not understand the commitment? I know its tough for those around us, and I appreciate and recognize that, but they have to remember a hard as it is for them, its way harder for US. And they have to recognize that if the tables were turned, we would be willing to do what they are doing.

    I am grateful I have a roof over my head. I am glad that I have food on my plate. Yesterday I was being self indulgent a bit, giving in to it. I just miss myself and my life. And most of all I miss having control -- over my body, my day, and my future. Usually I know that I just need to give it up to GOD and hope that there is a plan to all of this. Somedays its harder to do that than others.

    The good part is that I learned something from the responses, aside from the fact that we are all in the same storm. It seems that those of us that are doing the best have found a way to down size so that money and house cleaning isnt as much of a burden. that reinforces for me that what I was envisioning as a future plan is the right one. thank you for the good advice!



    Maybe fun gal's hubby will find a cure for all of us after his residency.
  19. cjcookie

    cjcookie New Member

    living with my parents since November. Yes, Iamnotmyillness' Mom - there are others in the same boat. I am going to have to sell my house and move in with my parents for financial and physical reasons. I'm 43. Believe me, I'm not looking forward to it.
  20. Michelle_NZ

    Michelle_NZ New Member

    she has been very supportive - emotionally and financially.

    I have not had to pay any board or bills or buy food since moving in here.

    I get a sickness benefit (like disability) which I use for vitamins, petrol, insurance, small treats, social etc

    I would be lost without my mum.

    I dont know how people do this one their own without financial assistance.

    TAke care
    Michelle