CFS and alone? I'm sooo sorry.

Discussion in 'Fibromyalgia Main Forum' started by nah.stacey, Dec 18, 2009.

  1. nah.stacey

    nah.stacey Member

    During my last flare this past week, I came to a startling realization.
    My husband has always been around to check on me during my past flares but due to the LOA's of two of the four managers at his company he has had to work an unimaginable number of hours ie. 12 hrs on 12hrs off, for 12 days straight, it is killer. Anyway, because this flare was accompanied by a SCS trial gone horribly wrong the pain was to the point that I truly thought I was going to lose my mind and I was alone most of the time and trying to fend for myself.

    My heart wrenching realization was this: How do those of you who are all alone, on your own, cope with survival and everyday life? How do you have the strength to keep getting up everyday?

    I realized how even though I have all this pain and suffering, how truly blessed I was to have SOMEONE who would take care of every day life.

    I am so very sad for those of you who are on your own. If I could get you all to my state of residence I would put you in my house and we could all take care of each other. I would take care of you myself (on the days I could) just so you wouldn't have to do it all on your own.
    My heart just aches at the thoughts of you being so very sick and unable to even get your own dinner on Christmas, let alone any other day of the year. I applaud your strength at holding on to a life you never asked for, for waking up everyday even if you can't get out of bed. You are my heroes. I'm grateful you have found your way here to where others care and know your pain. For all of us, alone or not, try to remember that "This too shall pass".
    Lucky thing for us is that nothing lasts forever, even though it feels like it.

    My God bless your body, heart and soul.
    [This Message was Edited on 12/18/2009]
  2. TeaBisqit

    TeaBisqit Member

    Since my mother and stepfather died two years ago, I am totally alone. My relatives have left me for dead.

    I have a cat. Without the cat, I probably would have killed myself long ago.

    Being alone sux, especially during holidays. I hate it. But I'm not well enough to really do anything, so it's just a horrible trap. Can't meet new friends because I can't do anything socially to meet them. Not well enough to join a church or take a class or do much of anything. So I'm stuck alone with my cat.

    I don't know, I'm where God wants me to be, doing what God wants me to be doing and that's it. If God wanted me to have a big, warm family and great job, I'd have it. Obviously, there's another plan going on. And that's how I look at it.
  3. karynwolfe

    karynwolfe New Member

    nah this honestly brought tears to my eyes... ty so, so much, for your very kind words, you have no idea how much i needed to hear this tonight... ((((((hugs))))))

    God bless you, your words are a message sent from heaven
  4. AuntTammie

    AuntTammie New Member

    thank you so much for writing this......I'm really struggling with this lately, and your understanding and validating words mean a lot
  5. jole

    jole Member

    Nah....what a sweetie you are!

    I just want to invite all of you who don't get out and about to come over to the chit chat board. There's a thread called the LOUNGERS, and it's for all of us who are mostly homebound. We discuss anything and everything...fairly lighthearted, but our down side too. It's not a fast-paced thread, so you can all keep up.

    We'd love to have ya join us if you care to........some there will also be alone for Christmas, and you could at least have someone to say hi to.

    By the way, this is not the chat room....find the chit chat board, that's us!.........Jole
  6. nah.stacey

    nah.stacey Member

    Jole- I know this is not the chit-chat board but this is also a very aimed post. Aimed directly to the hearts of those who suffer CFS/FM, chit-chat is for everyone on ProHealth.
    I know the pain and suffering of THESE people it was during a very horrific CFS/FM flare that prompted this thought. Only those who have suffered these terrible flares would know the pain and know what it is to work through it. Those who have others illness' I'm sorry for too, but ours is unique in that even our families turn away baffled why we stand alone. I thank you for the reminder as we don't want to clutter this board up with too many unnecessary posts of inconsequential things, but this was for my "friends" on CFS/FM, so this is where I chose to put my words.
  7. skeptik2

    skeptik2 Member

    Nah, I have always enjoyed reading your remarkable posts,
    and this one is no exception.

    You who are alone? You're not! I'll be on here Xmas Eve
    to say hello and let you know I'm thinking of you all.

    It is a perfect place for the post. The invite was just for
    anyone who wants to, to go over to the chitchat board
    if you want to, it was not a criticism of where this post
    is at all, ok? A little miscommunication there, methinks;
    but what the heck, with our brains it's all alright!

    BTW, I feel extremely lucky to live with two others with
    CFIDS; when one is down, the other is up and the third
    is 'in between', LOL! We all understand each other's
    needs to be silent, be still, be in bed, be behind on the
    chores, whatever.

    I wish you all had it; the understanding, the support, the
    validation, the company and companionship.

    If you don't, you have the rest of US...

  8. nah.stacey

    nah.stacey Member

    Skeptik2, what a support group. Sad that all of you suffer but great that you live with someone who truly understands you needs and limitations.

    While I do have a hubby who is very loving, his patience for this invisible illness is wearing thin, especially when I need him the most. He just checks out. I don't think he means to be cruel he just doesn't understand that sometimes, just sometimes, I need someone to say "Oh poor baby, I'm so sorry, what can I do for you" Not in those words, but at least those actions. Also, to not have expectations put on me that I feel guilty for not being able to fulfill. When he is working these long hours I'm on my own, then when he's off he expects me to be able to jump up and go do something with him or for him. I feel like the little kid in the old commercial where he spills his milk and his mom turns around to scold him and he looks at her with wounded eyes and says, "I'm doing the best I can." I AM doing the best I can and it just isn't enough.

    Thank you all for caring.
  9. jole

    jole Member

    Skeptik is totally right....I'm sorry you felt I was being critical of your have a wonderful heart, and of course this is the perfect place for your post! I too have severe FM and am housebound for the past 7 years now. I don't drive anymore due to mini seizures, so rely on my hubby to take me places, and can't shop more than sharing the grocery buying with him to help.

    I understand entirely what you were saying, and I agree that it's so hard to be alone. That's the only reason I mentioned the chit chat board :) We usually try to stay away from medical topics there and it's a break away from thinking about it constantly. We talk about our past "lives", dreams, funny thoughts and sayings, etc.

    It's still people who totally understand our way of life. Nearly all on that board has either FM or CFS, many in a severe form; some not, but all are welcome.

    I wish all of you a very Blessed Christmas, and praying we all find our answers soon. Perhaps 2010 will be a better year for all of to all..........Jole
  10. Elisa

    Elisa Member

    God Bless You Nah...

    You have such amazing empathy - thank you so much for your post - it brought me to tears to hear someone who understands.

    Thank you so so much,


  11. caroleye

    caroleye New Member

    Nah, my long term (30+ years) ended a year ago when my guy decided he needed his "freedom". He's been with me throughout my 30+ years of dealing w/Fibro, CFS & Lupus.
    But never have lived alone before, it truly is a major challenge. If it wasn't for having to let my little dog out in the mornings (and my pain), I wouldn't know how to motivate myself to get out of bed.

    My blessings are that I have a helper who does most of my physical stuff, but I'm on my own nights & most days. I remember when I was a young child (4-9 yrs), my parents used to leave me alone, and I was the only child. I was terrified, so am sure that plays into what I'm now facing.

    I've always been a strong woman, but as these illnesses & aging progress it becomes more difficult to hang on. But having a male companion in my life since a teen, I went to some online webs & actually found a very sweet guy who knows my illnesses & we talk on the phone when I'm usually very depressed in the evenings. I also found another guy who is a Professor at the University here. He's partially disabled, so he's available for me to pick up the phone as well. Even if I never meet these guys, just talking to them when they say "call me when you need me" lightens my spirit & strength to go on.

    No family or friends; but my little toy dog licks my tears when I'm crying, so he's my caretaker as well.

    Whenever I'm feeling I need deep understanding I can come back to your post, and say "yes" I'm doing the best I can & it aint easy. I'm just grateful that I'm as old as I am, so the likelihood of having to be in this state for long is temporary. So nothing does last forever.

    All that have answered you have acknowledged the heartfelt words & feelings we all need.

    LIGHT TO US ALL.................carole
  12. nah.stacey

    nah.stacey Member

    It breaks my heart that you are alone after 30+ years, he didn't need his freedom from you, just your illness'. I wish he could have been as strong as you are. You don't have the choice of running away from it. I am so grateful that you have two wonderful men to call who will listen when you just need a little compassion, sometimes that is all it takes to keep going.
    May God bless your body, heart and soul,
  13. Wireless

    Wireless New Member

    Too tired to type more but, thank you for this thread.
  14. Wireless

    Wireless New Member

    There are worse things than being alone. Being with someone who doesn't understand is usually worse to me.
  15. AuntTammie

    AuntTammie New Member

    for me, it's more missing my family and friends than it is a problem with being alone in and of itself, if that makes sense.......I have long enjoyed having some time alone - I need it, in fact, but I also really need time with others, and esp at Christmas, I really miss seeing people that i care about

    and it is also now a practical thing - without help, I often cannot really take care of myself anymore
    [This Message was Edited on 12/25/2009]
  16. caroleye

    caroleye New Member

    Tammie..........are there not any help options where you live? I absolutely need help; not 24/7, but heading that way. My preference, at this point, is the ability to have phone talks rather than anyone in my place.

    And Wireless, absolutely. No way will I even talk or e-mail anyone that doesn't "get it". Way too frustrating, stressful & meaningless.

    Sending Tammie some "helpers" via cyberspace ; she's gotta have them.

    Hope for filling whatever it is we all need.

  17. AuntTammie

    AuntTammie New Member

    There really aren't options for help available here unless you are a senior or developmentally disabled....or have a very short term need......I have posted about this before to try to find out if I was just not looking in the rt places, or something, and all the things that I have turned up and/or others have suggested are only available in this area to those populations....if you have moved out of your P's house but have not reached 55 or older yet, and do not have a developmental disability, and are living alone, you are just SOL, it seems. That is actually a huge part of why I have been down lately.
  18. rickj44

    rickj44 Member

    I am a male and when i go into a flare , I want too be left alone, and my wife finally gets it and leaves me alone until i start feeling better. I don't even want conversation, i can't help it.. I don't like being in that very dark place, that the pain takes me., the only thing i think of is, tomorrow might be better.

  19. nah.stacey

    nah.stacey Member

    I really do wish I could bring you all home. I know I wouldn't be much help, but I, like I think it was skeptic2? (brain fog) who had the set up of two other CFS/FM'ers living in. SOMEONE has to feel better than the other two at some point or another. NO ONE should have to do this alone, it's just not right.

    Perhaps the WPI will set up a "Recline Village" housing unit in honor of "Incline Village" then we will be close to those who can take care of us and those who know how we feel.

    My best of wishes to all this Holiday season. I am home nursing my hubby who has one day off out of 30 and has a NASTY case of stomach flu. Ahh, well, me, him and the percocet. He is MUCH sicker than I am. :~.

    May God bless you all, body, heart and soul,