I feel so alone

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, Nov 11, 2011.

  1. rosemarie

    rosemarie Member

    Living with fibro and other paiful conditions that people dont' understand is so hard and very lonely. I have fibro and end-stage oesteoarthritis in both knee's, DDD, arthritis in my left wrist , I also have two buldging discs L4-L5, L5-S1, CMP . And a few other conditions that caused pain but no one seems to know much about them.

    I have been alone all week as my hubby has been gone out of town on business. I have been in a flare for the last week and in so much pain. I felt so alone late at night when I had no one to talk to. But then I don't get any support from my hubby or daughters really when it comes to my pain and taking pain meds.

    My girls don't understand pain that nevfer goes away, nor does my husband really understand how much pain I live with on a daliy baisis. I was hurting so badly and there was no one I could talk to. Who do I tell that I hurt so bad I want to scream,But where do I scream where no one can heer ne? I don't tell husband or kids when the pain gets so bad because they dont' get it . How can some thing hurt when there is nohting that shows there is pain? Befofe I learned that I had fibro and CMP I would tell poeple about my pain but no one really wants to hear about my apuin all the time. So there is no point in talking about it now. How do you tell osm eone that this pain you have never goes away never gets better never goes away, gets worse and worse. then at times it will ease off but it never leaves toataly.

    I dont' remember a day in the last 15 yrs when I have not been sin pain that would make most poeple cry and when I said some thing about it I was told that nothing can hurt that bad. OR that if some thing really hurts there has to be a reason some thing that is real . NOt some misterious syndrome that no one kmnow about. I have been told so mnay times that scince I wnet to the doctor and was treated with pain meds, and am still treated with pain meds. So I get told that alot by famly and friends that I am a drug abuser that I take too many pain meds.
    I have gone to different doctors over the years , I have been told that what I have is real , that it causwes alot of pain,. I have talked to the doctors and to them I am not an abuser, I take my meds just like the script says, I don't take any more and some times less than I have been prescribed. I take my meds becasue I can't stand this pain that I have to live with and still be able to be a mom and a grandma. I wou ld not be abel to care for my 84 yr old mohter if I didn't have pain meds.

    Why is it like this? I dont' steal scripts I don't voer medicate my self, I watch closely what I take adn how much. I hvae thity days for evedry script , I can't ffil then even one day sooner than the thirty days .So I am know that they have to last me for that long , I have tried to lower my doseage so thatmy girls will stop telling me that I take too many pain pills , because I fell alseep while taliking to them on the phone. or at times at even fell alseep when I am talking to them face to face.. I have fallen alseep on the toleit when i have been in a flare , and when my faique is so bad.
    Now you see why I feel so alone. No one understands me that pain and fatique make peolple do strange things even dose off when talking to them.

    No one here underatnds me and I am hurt by that no one listens to what I have to say, when I have treid to explain how bad this pain is.
    I don't ant to sound like a cry baby or whineing. I just can't stand living in pain all alone any more. I hurt so much that I want to cry only I know that it would only cause more pain. So why cry?

    Thanks for letting me raqnt and rave about how I feel.
    ~HUGS~ Rosemarie
  2. rosemarie

    rosemarie Member

    I don't have a car that will make it that far. I will check it out htough. Thanks
  3. rosemarie

    rosemarie Member

    I feel so alone all the time. I went into Logan today with my daughter and 1 yr old grandson. My knee's were kililng me, the pain was so bad that I wanted to scream. But I didn't , I walked thru the supermaket hopeing that it would stretch my knee's and ease up the stiffness but it didn't. By the time we were dont I took a pian pill before going to my MOm's house for dinner and a visit. I made sure thqt my daughter didn't know I had taken one as I get tired of being told that every time I take a pain pill I start too doooze off and slur my words and act drunck, but that didn't happen no one knew that I had taken my meds.

    It has been so hard this week while my hubby is gone on a busines trip. My MOM has been upset by my older brother who has done some lousy stuff to her in the past few years. and out of the blue he changed her phone carrier which changed her phone number of 50+ yrs. Now none of the family or her friends can call her. She called and spoke to him and informed him that he better change the number back amazingly he did but it will take 4-6 days to get the old number back. She is not happy and then her basement flooded from a break in her sprinkler system {Which he HATE'S and thinks my oldest forced My mom to getting it.} Thankfully Mom thought to call her insurance who is paying for every thing including the cleaaning my daughter and huuubby did. They got the check and were in shock when it was over $2,000.00 far more than it should have been. So my daughter will get it fixed tomorrow.

    I am so tired and achey the weather is cahngeing and it has turned really cold and now I am in more pain than ever before. I wanted to cry today becasue of all the pain today. I dont' hear from friends much latley but I read on facebook htat my "best friend" or so I thought has major female surgery and will be out of work for close to 8 weeks.. on facebook I saw her post that stated her thanks for all the tests posts and calls while she was in the hospital. For being her best friend and knowing her for over 30 yrs you would have thought she would have said some thing to me and at least called me to let me know. I would have done any thing to be there for her. I don't know who my friends are any more. I don't know who will even hang out with me if I called them. But now I know not many of them want much to do with me.

    Maybe I haev compalined aobut my pain too much or that I have said some thing aobout the meds I take, I dont' know what I have done to make them not want to spend time with me. I jsut learned that another friends huband has pancreactic cancer and is doing better than expected. She was in numrsing school and had to quit to work full time. I feel bad there is nothing I can do to help her as she now works so many hours that she is not home and when she is she is with her family like she should be.

    This DD has taken so much away from me, family , friends, doing thinkgs with my grandbabies ect. I can't walkk very far , sit for hours, and going to the movies hurts my ears and head. Every movie I have been to in the last year seems like the ssound is turend up to EXTREMELY HIGH VOLUME all through the movies. It hurts me, eye's ears, head, bdoy, I never knew that sound could make my body hurt so much.

    I amy not be whining but it feels like it to me. Thanks for letting me vent .
    thanks for listening to me.

  4. inbetweendays

    inbetweendays New Member

    Remember, only you really know what exactly you are experiencing. I am sorry you are feeling so alone and lonely....I know how difficult living this way on a daily basis is--with no end in site....Treat yourself kindly....and keep reaching out. praying for you....
  5. rosemarie

    rosemarie Member

    Thank you for your thoughts, for thinking of me, I am not usually so alone but the past two weeks my hubby of 31 yrs has been on a business trip to Portland he got to come home for the week end then left again on Monday. He will be home Friday night late. I can't wait.

    It has been a tough week so much Bs is happening between my older brother and my daughter and Mom . I can't stand how he treats our mother so badly,does not listen to her. took control of her money and bank accounts, Last week the basement flooded and thankfully mom has insurance . My daughter and SIL live with my mom and they spent the first night cleaning up water from the frozen sprinkler system , the insurance rep told them that they had done enough work to more than cover the deductalbe and would be getting a check. The check came and was far more than we thought it would be.But before my daughter could f ind out why it was so high and what it was for, my sister took Mom to the bank and had her deposit it all. SO my daughter will get nothing for all her hard work that saved mom from payi8ng a $250 deductable . My brother hates it that my daughter has lived with our mother for the past 10 yrs , he can't find the time to see mom for more than ten minutes and when he does he does not l isten to her or he treats her like she is a two yr old.
    HE will make sure that my daughter does not get any rembursement for money she spent cleaning up and buying a new part for the sprinkler system {he hates it}
    So his reaction stress's me out. I hate it when he comes here as he does not really talk to mom and the way he treats her sucks.

    Just hvaing to spend time with him and lllisten to my mom cry about how badly my brother treats her only makes me feel worse as there is nothing I can d o a bout it. I cna't change how he feels and he is not happy with me so I try not to talk to him and not be aroaund when he is here.
    Thanks for letting me vent.
    Sorry for the griping about family but they really get to me.
  6. wacquiebob

    wacquiebob New Member

    Don't be sorry about griping. Family issues do make dealing with this illness even harder and make it feel even lonelier than it is. Continue to come here and vent. We really do care about how you feel and how you are coping with everything.
  7. Fibrotears

    Fibrotears New Member

    Dear Rosemary
    I REALLY feel for you! But, you are actually lucky. Not that I do not know how it feels if some family members doesn't understand. My situation is turned around.

    My family understands my pain, they have been there at my breakdowns when my chronic rectal and vaginal spasms and pain and FM were so bad that I cried like a little baby.

    My problem: the South African doctors do not believe me and that my pain can be so intense. It took me 10 years to convince them and then their understanding only lasted a year and I had to go to yet a new doc. They think that I am an addict, even though we FINALLY got a diagnoses for the r and v pain. My current GP let me know last week that December will be his last script for painmeds for me!

    So I don't know what I'm going to do. I'll probably die because of the instant withdrawel, but he's supposed to know that!

    Good luck to you and God bless.
  8. Janalynn

    Janalynn New Member

    Having a chronic illness, living with chronic pain etc. is a very lonely existence. Even when you have support, you are still alone with the struggle within your body. When you don't have support it must be 10x worse.

    With all that is going on with your body, I still can't figure out your family. Maybe you should focus less on the Fibro with them and get them to realize that the other physical things 'that are real, there and proven' cause immense pain. They obviously don't get your Fibro pain, but you have documentation of your other physical issues so they should certainly understand that. I'd try and make that the focus. Have you taken them to the Dr. with you yet?

    My Dr. referred me to a person who is a Chronic Pain therapist. This guy will do it over the phone. Maybe you could seek out some kind of service like that. They specialize in living with pain and all that comes with it, including the isolation both physical and emotional.

    Maybe your Dr.'s also have other Fibro patients who would be willing to talk to you (over the phone). Ask them if they would give your number out or if the others would give permission for you to contact them. It may be another outlet for you. You have to figure out ways to cope and I DO understand the feeling of total desperation. I've been there. I am going through an absolutely awful couple of months of pain. I just can't imagine being like THIS for much longer. I don't know the answers and I am scared, but I can't look too far into the future. I am trying to deal with today. Getting through each day - one at a time.
    Try making a list of what is good, what is right in your life as opposed to what is bad, wrong. It's just an exercise that may give you a few moments of peace. Sometimes I have to think of the smallest things but they really do give me gratitude. Being able to see the sunrise, cuddle with my elderly dog while she's still alive, having my nice warm blanket to snuggle into, having my Mom AND Dad still on this earth.

    I just went through a cancer diagnosis. I'll tell you when you are faced with "Am I going to live?", it really knocks you upside the head.
    I am okay now and I am madder than heck that I'm hurting and not enjoying the fact that I am cancer-free right now. I guess though that somebody up there thinks I can handle this. So I walk on....

    Think about what I said - maybe quit focusing on your Fibro with your family. They don't seem to get it nor understand it. You DO have real other issues and from what you've described those could be a huge part of the cause of your pain.

    We here do understand the relentless pain - many of us have it, some don't, but it is Miserable with a capital M! I certainly get it!

  9. rosemarie

    rosemarie Member

    Janalyn, thank you for your support. I do have a lot to be happy about, I have 7 healthy grandbabies ages 15 to 1 yr. I still have my MOm with me although she is quite frail and ill. She is still here and for that I am so grateful. I have a good husband who does what he can both financially and emotionally. I have three beautiful daughters who have good husbands. So yes I have alot to be thankful for and happy about.

    I will work on the not focusing on my fibro with my family.
    Thank you again and bless you for giving me a wake up call.