Discussion in 'Fibromyalgia Main Forum' started by sunnyslumber, Aug 1, 2009.

  1. sunnyslumber

    sunnyslumber New Member

    *I know there are a lot of empathetic people on this board, but who maybe can't handle strong negative emotions sometimes due to illness so I'd advise you not to read furthur if you are in a period like that*


    Since I don't post here often I will say that I have had chronic fatigue syndrome for 10 years. Ever since early high school. I don't really know what to post or how to say this but today I have been feeling extremely depressed. Nothing I have done has had any meaning. Usually when getting really depressed I come up with a six-week rule; a contract with myself not to give in to what I am feeling unless I am still feeling the same in six weeks. Invariably by six weeks I forget about it and everything turns out all right.

    Its funny everyone who was my friend before I was sick, my good friend, have just disappeared and from whatever I hear of them now and then they probably haven't had one thought to spare for me this entire year. It is probably selfish to be depressed over just that, but there is another aspect.

    Ever since I first became ill I tried to cling to the kind and (so it seemed to me) generous portion of my personality as it was all I could preserve. My mind was too slow to joke or be overconsiderate or think ahead much, but I tried to preserve that small kindess. When I think about whether that has really helped anyone I can't think it has. No one's life has been made better in any long term way or any considerable way by my little efforts at kindness. Even though I do hear from my parents what a great fellow I am, the way they act around me is the opposite of that. I know I am just a burden and something they would "rather not talk about" (or at the least the illness). I can feel I am looked upon as just a burden. Anyways its seemed to me so much of the time, even with a small act of kindness, I could still do something worthwhile. But it doesn't occur to really be that way. Today is one of the few days I've considered breaking my six-week rule and just giving in to these feelings.

    Well thanks for reading! I am sorry if I made you sad... I am not sure I know how to word the above to be completely lacking in that effect.

    Well Thanks Again,
  2. TeaBisqit

    TeaBisqit Member

    Hugs. I went through all that. All my friends are long gone. No one knows how to deal with a chronically ill person. They don't know what to say to you and they get tired of you not being able to do anything social.

    A few times, my mother made a comment to someone about how she was helping me and it just sounded like "burden" to me. I know she didn't mean it that way. But it bugged me.

    It's hard not to feel like a burden when you can't work and can't do much.

    I try to look at it as, if God wanted me to be working, I'd be working. Obviously, God has other plans.

    You are not alone. Many of us here have lost our entire lives to this disease. And we go through all the same emotions.
  3. AuntTammie

    AuntTammie New Member

    You said, "I tried to preserve that small kindess. When I think about whether that has really helped anyone I can't think it has. No one's life has been made better in any long term way or any considerable way by my little efforts at kindness".

    I completely disagree. I cannot tell you how many times it has been the small kindnesses of others that have kept me going. I know what you mean about feeling like that is not enough, bc I often struggle with wishing I could do more for others. I have always wanted to help others and all too frequently feel like I am not making a difference, am not helping, and am a burden......but I have come to realize that those small kindnesses DO make a big difference. You never really know what is going on in someone else's life or how your actions might impact them.

    There are so many people who have been in my life in just the smallest ways (the crossing guard I used to run past on a regular basis, the people at the front desk of the fitness center, the person who mans the entryway of the Arboretum I used to go to very often, etc), and the littlest exchanges with them brightened my day so much. And when they weren't there, I missed them, worried about them, and even prayed for them. I would be willing to bet you that none of them would ever think that they have made an impact on my life, but they have. (I would even volunteer that there have been times when I have felt suicidal and it has been unexpected little kindnesses and interactions with others who had no idea what I was dealing with that have helped.)

    The little things DO matter. They matter more than most people know. And your kindnesses matter. They matter. YOU matter. Those kindnesses matter to the people who have been blessed by them, and they matter, bc they say a lot about the type of person you are.....the type of person that we need more of in this world. I realize that when you are feeling as bad as you are, what I am writing might sound utterly ridiculous, but I am totally serious. The world is a better place with people around who care about being kind, and it would be worse without you in it.
  4. AuntTammie

    AuntTammie New Member

    You wrote, "if God wanted me to be working, I'd be working. Obviously, God has other plans" and I needed to hear that!

    I know that it's true, but I have been freaking out about money lately, and this is a good reminder....God has taken care of me thus far, He knows my situation and has provided for me (and if He thought I should be working, I doubt He would have helped me get this far - I don't mean that He would abandon me, but I think He would probably allow the financial situation to force me to work, or in some other way make it clear that He wanted me to work)

    He HAS made it clear many times and in many ways that He wants me to trust Him, and He has never let me down I thank you for this reminder.
  5. Janalynn

    Janalynn New Member

    Please do not worry about letting out your feelings! That is what we are here for!

    First of all, the fact that you care so much about making a difference with your small acts of kindness says volumes about your character! What a caring person you are. I am sure you've had quite an impact on people in your life that you don't even realize!

    As the others have mentioned, it is the the smallest of acts that usually mean the most to people. It's the person who gives you that smile when you're having a bad day, who lets you walk in before them and holds the door when they don't have to....the list goes on and on. Those things DO effect people long term - it may make them feel like they have some worth and value.

    I NEVER thought I'd lose friends. I don't think it's intentional, but unfortunately, kind of the nature of things. It's like they drift away then one day we realize they're not there. It's probably not the same for all of us - but I guess it's that way in my life. I can truly say, I haven't made the effort either because I haven't had the energy. People probably are/were tired of hearing my response when they asked how I am/was or if I wanted to do something.
    My best friend actually said "I would have asked you to go, but I knew you'd say no, cause you never want to do anything"- in not a very nice way. also "they more you lay around, the more you'll want to lay around".

    What a wonderful "rule" you have. It sounds like you really try to have a handle on your life and your attitude. Give yourself credit! But don't be so hard on yourself, it's okay to have a bad day (or two) It's okay to feel crappy about your situation. Feel what you need to feel, deal with those feelings, then pick yourself back up. You sound like the kind of person who will have no problem doing that.

    I'm glad you reached out! You sound like a wonderful person!

  6. TeaBisqit

    TeaBisqit Member

    We just need to remember to keep the faith.

    A few months ago, I saw this small religious show on tv. And the preacher said some really good things. He said that God knows you need food on your table, and God knows you need a roof over your head. And the Lord will provide. You might not have lobsters and fillet Mignon, but there will be food on your table. And you might not have a mansion, but you'll have a roof over your head.

    Some of us are just not meant to work. Any time in my life that I tried to do anything with working, it was like some kind of divine intervention stepped forward and put a stop to it. That's just the way it's been.

    Sometimes we just have to have faith and pray and let God do His/Her job.
  7. daboysone

    daboysone New Member

    I can relate to just wanting to give in to those feelings. I have fought with depression for 22 years and understand. I think your 6 wk contract is a good one to fight towards for long term goal, however for a shorter term goal just to get you over "the hump" maybe make a short term : I will get through today and tonight, re-acess (?spelling isn't my thing!) in the morning at 10:00 a.m. and then get through tommrow untill you start feeling a little stronger and can then focus on the long term goal of 6 wks. I at times have to do this, even with a goal of " I'll get through this hour, then 2 hrs, 1/2 a day, 1 day, etc...". You are not a burden...I get on this board and am encouraged because I know I am not the only person that feels the way I feel. I love to read everyone responses especially when "gentle hugs" are given. Please know that we care and you have alot to offer us, especially on this board, as well as everyone you make contact with...maybe someone like the postman is having a bad day and your "hello, and thankyou along with a gentle smile" could turn his/her day around! I hope you will feel a little better or alot better with each hr and day! M
  8. mbofov

    mbofov Active Member

    I do feel for you. I can totally identify with everything you said. Sometimes I get overwhelmed with being sick and start to feel useless and quite alone. This is a rough disease to deal with.

    One thing I've learned is that my feelings don't last forever. It's normal to feel depressed at times and at times I do want to give up. The important thing is that these feelings don't last more than a couple of days. Something will happen - I'll get a little energy or something to perk me up, and my mood changes.

    So actually I've learned not to fight it when I feel crappy. Just accept it (you might call that giving in to it). It's normal, and eventually it passes. If I try to force myself to feel a certain way, it doesn't work. I just remember that this too shall pass.... so I don't act on it.

    And I'm like you - about the only thing I'm capable of are small acts of kindness, smiling at a stranger, being nice to the checker in the grocery store.

    Anyways, you worded your post just fine. This is a very hard disease to deal with because it is so physically debilitating and so isolating and so hard for others to understand. I keep wondering what I did in a past life to end up like this! (sort of joking here, but not entirely ...)

    And - I do keep hoping to get better, I keep trying new things, and I do take a break from trying when I need to.

    Take care-

  9. AuntTammie

    AuntTammie New Member

    I guess it's a good thing that I am a vegetarian and have absolutely no desire for a mansion (or even a large house)! : )

    anyway, thanks again for the reminder
  10. faithinlove

    faithinlove New Member

    You have helped me by just having the courage to write what I had not gotten the courage to do yet.
    You see you have helped me just be posting.
    That is why we are here to support and help each other as much as we can.
    We do understand we have been there and going through this with you.
    Do not ever give up, I have wanted to but look you just helped me and you wanted to.
    I cannot do that and neither can you. You are needed!
    gentle hugs to you, Faith
    tomorrow will bring a brighter day.
    I love your six weeks idea.
  11. faithinlove

    faithinlove New Member

    You have helped me by just having the courage to write what I had not gotten the courage to do yet.
    You see you have helped me just be posting.
    That is why we are here to support and help each other as much as we can.
    We do understand we have been there and going through this with you.
    Do not ever give up, I have wanted to but look you just helped me and you wanted to.
    I cannot do that and neither can you. You are needed!
    gentle hugs to you, Faith
    tomorrow will bring a brighter day.
    I love your six weeks idea.
  12. Empower

    Empower New Member

    I urge you to go and talk to someone if you already haven't, or at least visit your PCP

    I was going through this about 6 weeks ago, very very very depressed.

    I started taking Effexor again, and I don't feel as hopeless and it helps me to deal with the CFS and the FMS a little better

    Please do not give up....there is hope out there somewhere. You never know when a treatment might come out or someone might suggest something that might ACTUALLY work

    Take care and I hope things start looking up for you
  13. sunnyslumber

    sunnyslumber New Member

    I'm still in a relapse since this post so ... every sentence and minute seems like a terrible struggle (and was without internet access the last 5 days--house termiting). I really appreciate everyones' responses and I read all of them. Thank-you. I guess I need to believe that I am enduring this because I have something worth doing ahead. But everytime I think I'm getting closer to that, something like a relapse happens. Thanks, and I appreciate all the hugs/prayers. I am glad to know so many kind people. Sorry if that was a bit repetitive, well really tired so going now, but I did read your messages and thanks! =)
  14. sunnyslumber

    sunnyslumber New Member

    Thanks BroadCasting, ... you're right everything is a fight. I've tried to do my best, but I get so depressed (partially because I am in a relapse) but also because I try so hard and so little results. Why is it so hard to read a book, or brush my teeth? Why is it something that requires my conscious planning? Eventually the immensity of the effort and the very small results can be very frustrating. I still have hope in my ability to do good, now, and perhaps more later but it is very taxing. Part of me feels like I can't let this experience, of suffering, go to waste, so when it seems like it very likely will I become extremely depressed.

    TeaBisqit: I guess I am the same as you in terms of friends. Like you I can kind of understand why people would find dealing with a person who was ill awkward. Afterall our society, the whole American Dream thing is that the strongest and most gifted claw their way to the top and isn't very focused on others or relationships at all. So I can kind of understand. But still I want to believe in true friendship... Isn't there anyone who is courageous enough to be able to overcome the awkwardness of it? Is it really that "everyone has their price" when it comes to friendship? I want to believe the opposite so badly but can't find any evidence a lot of the time.

    AuntTammie: Thanks! Maybe the little things matter a lot however my whole life I've wanted to do something comiserate with such a blessing as "well done.... faithful servant" or "I have run the good race, I have fought the good fight". I have always thought of this as accomplishing some grand affair, much as the author of that accomplished many grand affairs. It is really hard for me to readjust myself to the possibilty of putting all my effort into small kindnesses, even now I don't know if I could or couldn't.

    anchorholds: Thanks for the support and good advice! =) One day I want to look back on this period of my life and be proud of how I handled this sorry scenario. To know I did my best.

    Janalynn: Hi, I appreciate everything you said. Maybe I'm not the person you described exactly ;) but one day I hope to be closer to that person. I suppose I just relapsed and lost so much ground in such a hurry. It is a real downer whenever that happens.

    TeaBisqit: Thanks for the religous message. Yes, God knows the limits of our abilities to handle a situation, if we can live on steak or just ground beef =). I just fear I am reaching my limit. it would be so nice to hear God's reassurance in my life as happens a lot in the Bible.

    daboysone: Thanks. I am so sorry about how you have suffered with depression so long. It truly is terrible, and physical incapacity just makes it that much worse. Thank you in terms of offering things to people I still sort of feel like the kid who goes to a party only to find out that everyone else got the birthday-kid very good gifts while you just got them some cheap pen from the 99 cents store or something. Its something but it fells so inadequete. It seems all I can do is trust that people are happy that I exist, that I came to the party at all, but its hard since I don't know if I would be happy I exist if I were someone else.

    mbofov: Yea I have tendacy to want to force it too! Its bad but it just feels like time is slipping through my fingers, my goals, my life. I've wondered about the past life thing too! Maybe we all have in a not completely serious sort of way. It feels like I must have been some kind of terrible war criminal in a past life a lot of the time! =)

    faithinlove: You called me courageous so I'll take it. What a nice compliment. I doubt I'm all that courageous but I do know we need to do something,... some kind of change in our culture... it isn't right that so many people who are sick (whether CFS/ME or MS or Lyme etc) are left out to dry. Shouldn't we all try and help each other more? If only there was a way for more of us to be active in advocating for that...

    Empower: I'm sorry to hear you have gone through this. I am alreading taking a lot of medications (not for depression) and I think I should try and avoid them if I can possibly avoid them since I am already on a lot. Thank-you, I try not to give up, but it seems everything is receding from me, all my dreams and goals with the passage of time. I just desperately want something to work. If I could have five to ten good years to accomplish something, then kerplunk, I'd perfer that immensely to "unlimited number of bad years." Thanks for everything, we might get lucky. I really hope we do and someone discovers something (I use the word "Luck" because our illnesses are so underfunded and underresearched). When I'm better I hope I can be a kinder person than all those who left me out to dry and try to help others who are still not so fortunate. Hopefully it's only a question of "when" =)

    Thanks everyone. Sorry if my wording is bad, or if I forgot to thank you for something. Please chalk it up to CFS ;). I've read and reread each of your posts. TK!


    also please feel free to contact me, I might be slow to respond, but if I see it I definately will.
  15. gapsych

    gapsych New Member

    What medications are you on? Sometimes they can have the side effect of being depressed.

    Have you talked this over with your doctor? Maybe a trial of an AD would help. This helped me tremendously. I don't want to believe that an AD changes how you look at the world but believe me it did. Slowly but surely.

    If you do go this route, I would go to a psychiatrist not for therapy, most do not do this anymore, but for a complete evaluation.

    This is just my two cents worth.

    Good luck.