Lack of support

I was diagnosed with CFS in the mid-90s and Fibro recently. I am in the throes of a horribly, debilitating flare. I sleep so much and have so little energy to do anything. The housework has gotten ahead of me and I feel terrible about it. I don't even want people to come by. My husband says he understands my illnesses. But doesn't help me much - he'll do HIS laundry, for example. Just his. He'll clean HIS part of the bathroom. And he thinks fibro is BS and that I am just lazy. His mother doesn't help, she believes I am lazy and he is a mama's boy - he sides with her no matter what. I have no kids other than the furry kind, the closest family is 2.5 hours away by car. I have a few local friends that I have found only recently despite having lived here for years, but they too have their own issues so I don't like to lean too hard all the time. I feel completely without support. I am on LTD from work, and have filed for SSDI (I have other conditions as well), and am "stuck" for lack of a better term. I can't support myself at this time, so I can't leave. I have nowhere else I can go, unless I leave all my babies behind, and I absolutely refuse to do that. I had to do it once many years ago and it was a horrifying ordeal. I will never abandon my babies again. They are one of the biggest supports I have. Anyone else have a similar situation, where you feel alone and unsupported despite having spouse or people around you, especially those that do not believe what you have is real? How do you cope? It's very hard.

Comments

  • @Frankie I'm sorry you are going through this. I am single and most people believe that fibromyalgia is the same as hypochondria. I have other physical problems in addition to the fibromyalgia. I was turned down for SSD but, most people get turned down at first. However, I did receive it on the 1st appeal and didn't have to have a hearing. I hope you start getting more support for your condition from your family. I share relevant information on Facebook. It has helped.
  • I absolutely understand. I can't walk or play with my dog. I am barely able to do my part in a business I started 14 years ago with my husband. I have no social life what so ever, as I live too far from family and friends. I survive on social media and texting with those who try to keep me in their lives. Sometimes it is rough to watch everyone else "living" on FB. I have some good supporters, but the stress of being a burden can take a toll too. Gosh. I could go on... Let those fur babies keep you getting up to face another day. Whatever it takes. Hang in there.
  • Frankie, you're not alone. I have two sons who are grown and I live with my elderly father. I was diagnosed with fibro in 1991, and have several other equally debilitating autoimmune conditions. My sons have told me there is nothing wrong with me and that I'm just seeking attention. My dad doesn't express it as much, but he thinks the same and I suspect planted the thoughts in them. They have been quite cruel. I'm a teacher who feels too bad to teach. I was on private disability for five years, but that expired and I've not been able to qualify for SSDI. I've been working various jobs so I can pay off my medical bills. It's frightening to think too much about my future.

    That being said, know you're not alone in the struggle. My attitude is that one day they'll see how ill I am...when I'm gone. Until then, distance yourself as much as you can and seek those who will support you emotionally. My oldest son has been diagnosed with fibro, and I think karma may take care of him. It's hard to do, but realize it for what it is: neglect and emotional abuse. Bless you!
  • I can relate. It is hard at times to be cut off from the world as it seems at times. I have it so bad that I have had more than one medical professional say I either have it the worse they have seen or something else that either makes it worse or mimics fybro. Early on for me I had a really bad episode before they gave me meds for nerve pain. By doctors' orders I went to the ER on three different times in the first couple of weeks. I did learn one interesting bit of trivia from that; you can be in so much pain that your heart will slow down. I was kept of hours one time because for a good while my heart was beating around 50 bpm for a few hours. It took the docs a while to understand just how much pain I was in. You should have seen their reaction when they realized that on my personal pain scale of 1-10 that I have had serious pain my life. That kidney stones for me are only about a 7 and I was hitting solid 9 and rounding the corner on 10. I can't work for a variety of reasons and even driving very far is not something I do anymore. I have weakness that comes and goes, mental fog and problems walking much. I had to get a cane because my leg will give out without notice. Without something to help get myself up I am stuck on the ground. I have had to have help getting up more than once. I am on ssdi now and some ltd but I am not sure how long that will continue. I had to get a lawyer and sue them once. I can't work and can't live alone all the time. I am just waiting for the divorce to be final. I have put on a ton of weight on top of everything. The best thing for me has been getting a kitten from a shelter. It is part maine coon and HUGE now that he is grown. When I have having bad mental days he finds way to make me laugh. He seems to know when I am down and will not leave me alone when I am in a bad way. I honestly can't stress enough just how much that cat means to me now. My family has been a huge help but they don't get it. My father has health issues and everything I have just "HAS" to be like his problems and refuses to really think otherwise. My mom thinks that oils, herbs, prayer and diet will fix everything. My grandfather was a preacher and my grandmother was a teacher and taught sunday school for years. My grandmother even thought my mom was taking the fringe religious stuff too far. My mom means well but she keeps dealing with the fringe stuff. It sucks having something that is not only not a visible disability and there is not a test that says yep you have it.
  • Frankie, I can completely empathize. My boyfriend is a slob. He refuses to do any housework at all. He washes his own laundry. He empties the dishwasher. He is a truck driver and he is on the road 5 days of the week. If I don't go grocery shopping when he goes, I don't get food for the week. Or I have to go shopping on my own. I am not working and don't have a paycheck coming in. So I don't do much grocery shopping on my own. On the days he is home he goes fishing in the mornings and then comes home and sleeps. Or he has band practice all day and then plays music at night. When he does have time to do anything around the house, he wastes his time playing angry birds or spends hours on Facebook instead. Whenever I say something to him about it, it goes in one ear and out the other. He literally ignores it. I don't have any close friends or family living within 2 1/2 hours of me. I have no one to call for help. If I wanted to leave, I have no where to go and no way to get there and nothing to help pay my expenses. As it is, I have been living here for 2 1/2 years and half of my belongings are still in a storage unit. There is plenty of room in the house for my furniture if he would work with me in getting things cleaned up and rearranged, but he hasn't. So, I am still paying storage fees on half of my house hold belongings. The only thing I can give him credit for, is he is sympathetic to my fibromyalgia pain. He understands, but he still won't put out the extra effort to make life easier for both of us. So.. yes.. ma'am.. I feel your pain in more ways than one!!
  • Sorry to hear what you are going through. I can relate. My husband doesn't even acknowledge that anything is wrong with me. He thinks it is all in my head. I get no sympathy or help from him at all. I am nearly 50, my kids are grown and I have grandchildren. None of them really acknowledge my fibro at all and expect me to do like I have always done for everyone. Seems like they just don't care or believe me
  • @rareblu I have posted a blog I wrote to help family members understand what you are going through. I hope you get the chance t read it!
  • @Frankie Frankie, My heart just broke reading the loneliness and pain in your post. I just want you to know I will keep you in my prayers. No one has a clue unless they have been there. I wrote a blog to family members so maybe it would help someone else explain to their family what they are going through. I hope it helps. Go'd blessings on you my friend. https://debbiesjourneytohealthandhope.com/2014/08/20/you-dont-look-sick-valley-of-pain-1/
  • @KimberlyB Kimberly, This breaks my heart! I wish there were something I could do to help you. I wrote a blog on trying to help family members understand... I hope it helps a bit. My husband has to read it about every six months ... when he forgets I'm doing everything possible to manage this horrible ravaging of my body. Blessings, Debbie https://debbiesjourneytohealthandhope.com/2014/08/20/you-dont-look-sick-valley-of-pain-1/

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