What to do with my life? (Subtitle: The 2 a.m. Blues)

Discussion in 'Fibromyalgia Main Forum' started by DeMcKen, Jul 30, 2003.

  1. DeMcKen

    DeMcKen New Member

    Hi, I'm new here. My name is Denise and I am newly diagnosed with likely CFS/FM after years of dealing with fatigue and sleep problems. Over the last 1-5 years, other lovely symptoms have shown their faces, which I'm sure you're all more than familiar with.

    Most of the time I try to keep a postive outlook: I don't have a terminal disease, my symptoms aren't as bad as some and I have a beautiful daughter and wonderful family - it could be much worse.

    I lost it today and cried and cried as I haven't in I don't know how long - I couldn't start my lawn mower. I didn't even know how I intended to mow the lawn - couldn't even finish a load of dishes - but not even being able to start it sent me slamming into the house in frustration.

    And when I got inside - I couldn't figure out what to do. Watch more inane TV? Try to read something? Take yet another nap? I HATE MY COUCH!!!! Is this going to be my LIFE? I just can't stand myself anymore and couldn't bear to be in the house with myself for another minute. Luckily, a friend came and picked me up and I felt much better. But what about tomorrow? And the next day? And the day after?

    I just don't know what to do. I'm 33 years old, a single mother with a single (non-existent) income and I can't even take care of my house. I bought this house LAST April and I'm still not moved in - eating off plastic plates and sleeping on a mattress on the floor. I don't know what to do. I want to refinsih floors and make curtains and remodel the kitchen and I don't hae teh strength to even MOVE IN.

    I haven't worked in over a year and can't begin to imagine how I'm going to do it, but I HAVE to - if I can even get a job. (See my other whiny post a few down :)

    I have a wonderful family and a good friend or two left, but I haven't had so much as a single date in four years, five years? I am so lonely (although I only admit it in the wee hours of the morning) and so lost.

    I know there are those of you out there who have had a terrible time with CFS or FM. What do you do? How do you manage? What fulfills you in the life that this disease has left you?

    I know I sound awful and I'm sorry, but I don't know who else to turn to who would understand. I usually just read posts and take heart and support from you all, but I've had enough and I don't want to be like this anymore. Thank you for listening - I know you all have your own heartache and I appreciate it,


  2. Shirl

    Shirl New Member

    Hi Denise, welcome to our world. Yes, we all can understand your frustration. It is a miserable illness, but it can be controlled and you can have a life, its not terminal, and it could be worst!.

    First you need to make some life style changes, like mowing the lawn is a big no, no. You need to do things in moderation.

    I think you first need to get moved into your home. That in itself is very frustration when you have disorder all around you.

    You said you have a good family and friends, get them to help you , and help to at the least get your bed up and furniture in some order.

    Then you can concertrate on putting things where you want them, at your own speed and when you feel well enough to do so.

    I raised three children with FM, and my grandson from birth to 5 years old. Now everyone is grown and on their own. Its my husband, my dogs and myself here. Its not easy, but it can be done.

    I moved out in the country 9 years ago. I had a lot of help getting my house in some sense of order, but I finally got it like I wanted it.
    The big job was getting my over 10,000 books on their shelves. Sometimes I could hardly lift two of them at a time, but they finally got where they belonged.

    You need to get your home straight, then you can work on your health. Disorder causes stress and stress makes us sicker then we already are.

    As for being alone, don't worry about it, my husband of 30 years now, married me with this illness, and three kids . There is someone out there for you too.

    You can do it, just like the rest of us do. Take charge, get you home in order. That has got to be done first. Then the rest will fall in place for you.

    You are not alone, you have us when you want to chat, vent, or have a problem. There is always someone here to talk to, give advice, or even cry on their shoulders.

    Good to have you join us, and start moving in your house!

    Shalom, Shirl

  3. ozgran

    ozgran New Member

    Just wanted to welcome you. It is hard with this FM but Shirl gave you good advice and others will be along to support you. I am a 65 yr old grannie from Oz' and did not know what was wrong with me for a long time. I had to retire from work a couple of years ago just as I was getting our finances in some order after lots of problems trying to keep going on our farm. The last couple of years was to be when we got some little luxuries etc and thought I would be living a much different life to what I am now, but that hasn't happened. Then I have FM which has added to the problems. But I have tried to remain positive even on days such as today when the pain has been quite bad. Just come to this board whenever you feel like it and you will get lots of information as well as love and support. Love Ozgran
  4. teach6

    teach6 New Member

    I can really relate to your story. Although I've had CFS/FM symptoms for at least 20 years I didn't get so bad that I couldn't work until shortly after I moved into my current home along with my 92 year old mother and my 24 year old son two years ago.

    The only way I ever got myself packed for moving, eveything had to go into storage, to make it worse, was by asking my friends for help. I couldn't have done it without them. None of them did a lot, but each did a little and together it all added up to getting it done.

    Moving in I did a little at a time. I was lucky enough to hire two friends of my daughter who helped unload a storage unit and put together the desk I am using right now.

    I just finished the curtains for the front bedroom that gets the afternoon sun. It took almost two years, but they are now up. I just have taken it one thing at a time. I would pick a room, or a box and begin and do what I could.

    I have to do almost everything sitting down due to Neurally Mediated Hypotension. My house is pretty well put together now. It didn't happen overnight, but I just kept doing a little at at time.

    I am lucky because my job had both STD and LTD available to me. I filed for SSDI over a year ago, as well as disability retirement. I was assured my retirement would be approved by last September, but it has been denied twice and is still being appealed.

    For years I had no desire to date. Sometimes I think I may be nuts, but I am currently doing some online dating and having a good time. I have been upfront about my illness and since I did that I have had men writing to me all the time!

    So, hang in there and take things one thing at a time. The whole job can be overwhelming, but when you break it into very small parts it becomes possible.

    [This Message was Edited on 07/31/2003]
    PS Thanks for the plug Suzanne! I am one of the moderators for these courses, although I only do them twice a year. She happens to be in my group this time, although I don't think she has made the connection yet. I do agree that they are great. I wouldn't be affiliated with them if I didn't think that!
    [This Message was Edited on 07/31/2003]
  5. elaine_p

    elaine_p New Member

    I don't have any suggestions for ya. But I do want to say that I moved here 3 years ago. It took a year for me to get any pictures up (a few still aren't). And I still haven't unpacked my knickknacks. I consider that's one of those "I'll get around to it sometime" things, and in the meantime I don't have to dust the dang things!

    My plates and stuff are unpacked, but I recently decided that I'm going to try paper for awhile, since the energy it takes to wash the dishes could be better used.... (Stupid me didn't know there wasn't a dishwasher here 'til after I moved in.) Of course, then I'll have to fight with the environmentalist in me, but oh well.
  6. atrinigyal29

    atrinigyal29 New Member

    We all have the right to get frustrated and angry with this DD, so it's ok that you are feeling that way. What works best for me whenever I feel frustrated or depressed is to right my feelings in my journal. It may not solve the problem, but it sure helps to express my feelings, and I feel better after writing. Also, this message board has also helped me a lot. There are many loving and supportive people here who understand what you are going through and give great advice. I see that you've gotten great advice here on how to settle in to your house. :)

    You mention that your family and friends are supportive. That's great. You also said that a friend of yours picked you up and you felt a little better. That's also great. Like you, I tend to associate my surroundings (my house, my family room, etc.) with my illness. Sometimes it's good to remove yourself from your surroundings. If you're not feeling well but sick of the house, call a friend or family member up and spend time at their house, just to change your environment. Explain to them that you are not feeling well and may not be great company but would like to come over just for a change of scenery. Well I hope this is helpful. Take care and know that we are all here for you.
  7. Mar19

    Mar19 New Member

    Welcome to our board. Not much in the advice department to add after all the great ideas already posted. Just wanted to let you know I understand how you feel and that you will be in my prayers. Oh, one more thing...a big cyber-hug to you {{{{{{Denise}}}}}
    Love and blessings
  8. fibrojewel

    fibrojewel New Member

    I have to agree with Mar, I really don't have much advise to give that hasn't already been offered, but I can give very gentle hugs ((((((((HUG)))))))))) and tell you that I will put you on my prayer list! You can depend on my word to hold you in my thoughts, and send what support I can to you. If you want to just talk, go to the CHIT CHAT baord and post *jewel* and talk to me anytime!

    We are all here sweetheart!
    Blessings be yours,
  9. mamafrey

    mamafrey New Member

    the best advice has been given, same here, i will keep you in my thoughts and prayers. Please keep us updated on how you are doing. luv and hugs, mama
  10. shoshi68

    shoshi68 New Member

    i know that by adjusting my lifestyle, pacing myself. recognizing that there are things i can do, and that i am still good at. with the love of my famliy/friends- especially the kids- i'll figure it out. i'm 34 and i get the being too young to feel so old stuff. answers will come. shirl was great, step by step- and when you can't, don't. when you don't over do, you be able to do more.

  11. DeMcKen

    DeMcKen New Member

    I just finally dragged myself out of bed and came straight here to see if there were any new posts. I'm now sitting here with tears streaming down my face.

    You are all just too wonderful for words. Do you have any idea how it feels to know that you aren't the only one sitting in an empty house or eating off paper plates?

    The nights when you can't sleep and you're sitting alone in a quiet house are the worst. It's too late to call anyone,but now I know I can come here and won't feel so alone.

    Bless you all,

  12. lmn

    lmn New Member

    You are definitely not alone! Welcome to the board. I'm glad you found us. Take it easy on yourself, and research as much as you can. Soon everything will fall into place and you will manage. Believe me. When you're feeling down, just pop in and visit.
    Take care,
  13. mamafrey

    mamafrey New Member

    Just checking in on you today. How did your night go? Are you feeling any better. Let me know, keeping you in my thoughts and prayers, mama
  14. DeMcKen

    DeMcKen New Member

    How sweet are you to ask! Not much physical improvement, but mentally much better since finding you guys.

    I saw my doctor today. She increased my amitryptilene another 25mg and also gave me a script for Ambien to hopefully get my sleep cycle somewhat back on track. (of course, i didn't have the money to fill it yet, so here I am!)

    Managed to take my daughter to dinner tonight. We were going to see a movie at the 2.00 theater also, but I just wasn't able to sit anymore. Still, got out of the house for a bit.

    I decided to swallow my pride and look into disabiity and maybe bankruptcy to stall foreclosure. Hate to do it, but I feel a little better taking SOME sort of action.

    Hope all is well with you,