Discussion in 'Fibromyalgia Main Forum' started by cindy41, Apr 14, 2007.

  1. cindy41

    cindy41 New Member

    First let me say I am one of those lurkers people were posting about earlier. Been coming here for years, have learned so much, but just do not post much. I vividly remember the time I was a member of a MS group that actually said if people did not post they were going to be removed from membership. After all these years I have followed the lives of some of you and feel I know you.

    Why do I not post often? Sometimes because I am just too darn tired, sometimes nothing to add, but please be assured that to those of you who do post info, and who do post often the rest of us lurkers truly appreciated having this place to go to, and you are appreciated for sharing your time and energy and info with us.

    Now to get on to why I am posting today:

    What a crappy week it has been. My plan for today was to get up and clean my house because a co-worker is coming with a truckload of stuff for a neighbor whose house burned down last weekend. Totally gone( I spent the week organizing getting this family stuff, and i am really proud of that, but am totally exhausted from the effort)

    Feel guitly complaining, they lost everything, with no insurance, and the husband lost his job two weeks ago, no fire insurance. We live in mobile homes.

    Anyway tomorrow I am going to be so embarassed when my co-worker shows up. I work all week, but barely move on the weekend, just to make it through another week. Have had CFS for at least 14 years, and dx'ed with "probable benign ms" due to positive spinal tap, negative MRI.(how's that for a non-diagnostic diagnosis?)

    Thinking about cutting back my hours at work, if we can afford it, but are just scraping by already.

    Hubby goes to the doc on Monday because his PSA went up really fast and they want to check him for prostate cancer.

    I really feel like sometimes I contribute nothing but a paycheck here. Would love to get out and do something, but it always comes at such a price.

    Need to take some of the burden of the household stuff off my husband, but not sure I can, and I feel so, so selfish for that.

    Just so very tired of being tired.
    Guess I just needed to get that off my chest in the only place where people would truly understand.

  2. momblue

    momblue New Member

    I am sorry to hear of your hard times. You should be proud of yourself for helping out with the family that had the fire, good for you!
    As far as how you are feeling, I can understand. It is frustrating when you want your home a certain way, and if you aren't the one who does it, well, no one else picks up the slack. You have to look at things with your husband like this: you are both on the same road, heading into the same unknown, but you are together. Day to day living creaps up on us and it is easy to loose track of that.
    Don't think that helped much! It is nice to hear from you!
  3. Fredericka

    Fredericka New Member

    Hi Cindy, I am so glad you posted. I've been coming here for years also and don't post much. In fact I've not been coming around for awhile. Life happens, illness, death in the family, kids living with us, (just got them outta here, yay!) & etc. Stuff that happens to everyone.

    I totally "get" what you are saying. Guilt is such a horrible thing for sick people to be forced to endure. I also struggle with that constantly as many (most) members do too, I'm sure.

    It's so hard not to be too hard on ourselves. I think you're doing great by keeping on working like you do. I had to give it up 4 yrs ago and it has been at a terrible cost.

    Your co-worker won't care about what your house looks like. What you guys are doing for that poor family is wonderful!! Please try to think of that and forget the house. I know, easier said than done, but try.

    We all feel your pain and exhaustion. The last two decades that I worked was terribly hard. Long commutes and even longer hours. I don't know how I did it without ever collapsing.

    I need to post more, too, and I will try to. This is a great group of people. I've learned a lot here, too.

    I guess I just wanted to encourage you, I'm not sure I have. But your post touched my heart and I DO know just exactly how you feel.

    Even now, not working, I can't keep up with the house or cooking and feel very guilty. But I do try to do what I can. DH may not always understand but he isn't cranky about it.

    Take it easy on yourself. You sure didn't ask to be sick. I am sorry you feel so bad and I hope it gets better. Bless your heart for reaching out to that family and to all of us here. I think you're wonderful and I hope I can get to know you better.

    I hope your husband's tests turn out good....hang in there.

    I've been 'down' sick for the last 2 wks. and one family member suggested I need to go take walks and another thinks I may be depressed....arrrgghhh!!!!! But I told both of them, I understand that YOU just don't understand this disease. I didn't "get it" either, until I GOT IT!! It's impossible to.

    I'm some 36 years into when this all started. (I was a young 17 then.)That's a long haul. I still get frustrated and yes, even angry at times, even after this long of a time.

    I know this is too long, but just wanted to talk to you... Please take good care!!
  4. coolma

    coolma New Member

    Don't be hard on yourself. It sounds like you have a heavy load - and you are doing such a good thing for your neighbour. It is OK to be realistic about your condition.

    It would even be OK to let people know you have an illness. Someone once said we determine how people treat us. It took me a long time to learn to set boundaries and limits on my activities - and how I let others treat me. It is a valuable thing to learn. And it is OK to acknowledge your condition. You have to live in it.

    All things have their season, so regarding posting and anything else - you have enough on your shoulders right now. There may be a time in your life that you will have loads of time on your hands, so don't be too hasty! All things have their time.

    Good luck. Rest up and I wish you good health in the future for you and your hubby!
  5. cindy41

    cindy41 New Member

    for responding.

    I guess depression is kicking my butt right now. I am sure this too shall pass. But personally I am so sick and tired of the struggle.

    Tried all sorts of vitamins, supplements, antivirals, antidepressants, sedatives, alertness meds, diets, exercise, etc,etc, and so far nothing. Don't even have many good days any more.

    As far as the family it did make me feel good to help them, I work for a large company and put the word out, collected almost 500.00, tons of clothes and toys, and almost a full house of furniture.

    They are getting a new (used) mobile this weekend, and have a good start to getting back on their feet, thanks to the kindness of people who don't even know them.

    Can not remember the last time I was so involved in anything. But the house is right across the street, and I think he and I were the only ones up that morning, took my dog out at 8:30, and at 8:40 their house was up in flames, it happened so fast. So after seeing that I really had a case of the guilts. how can I complain about pain and fatigue, when this family lost everything?

    I don't know maybe it's just all the stress this week, but I am really just about ready to give up hope of ever feeling anything close to normal.

    So sorry to vent so much, didn't realize I had it all in me.

  6. jole

    jole Member

    Welcome, even if you're not new... and don't worry about being a lurker..I do a lot of that too, and I understand about this board being good for us. There are days we need it but can't contribute...wish it were different, but it's not.

    I too feel like wasted space more days than not. I have a feeling you are like me, just don't have the energy for any more than what is necessary. When I was still working 6 months ago I was a zombie...work was all there was in me, and the rest was a big nothing.

    After seeing how fast a home can disappear, please don't worry about the cleanliness of yours. Just tell your coworker that you are more concerned about helping your neighbors right now and will get to yours later. Bless you for being there for them! You know the meaning of LOVE!

    Be kind to yourself. Holding down a job is a terriffic burden in itself, plus all the stress with not knowing for sure how yuor hubby is, etc.

    Wish there were more I could do for you - just know I care!

    Friends - Jole

    [This Message was Edited on 04/14/2007]
  7. deliarose

    deliarose New Member

    You are a bloody hero. An endurance athlete in the world of CFS.

    Give yourself some credit. You have to, cos no one else will. They just don't get it.

    I don't look to others for understanding or sympathy or validation any more. Waste of time. I knew getting better would be all the validation I need, and I am getting there.

    And now I just do not give a hoot about anyone else, or what they think. It's a great feeling.

    Also, take a look at the mito fuel posts and the methylation posts to see if there is something there that could help you.
  8. FibroPainSufferer

    FibroPainSufferer New Member

    First, I want to tell you that you are doing an awesome thing by trying to help your neighbor who lost everything to a fire!!! I would love to be able to give back to my community or do some volunteer work again but my body won’t allow me.

    Our lives sound identical! I work all week also & then when the weekends roll around, I spend them trying to clean, do wash, etc...all the things that need to be done before I start another work week. I can’t go out either! After working 40 hours a week & then doing my chores & errands on the weekends, there is nothing left for me but sleep!

    We all need to vent at times especially to people who walk in your shoes! Don’t feel guilty because you sound like an amazing person! You are doing what you can to help your neighbor get through probably one of the roughest times in their lives...that makes you a great person & I’m a true believer that when we do good things, we do get paid back somehow for them!

    You take good care of yourself & I’m so glad that you finally posted!!! I’ll keep you & your husband in my thoughts & prayers! Please keep us posted on your husband.
  9. cindy41

    cindy41 New Member

    For responding to my post.

    Momblue: You are so right, if we don't do it, it just doesn't get done. I won't even go into the fact that I have two grown kids living here, who seem to think I am just lazy. But thank you for your encourgement.

    Fredericka: Thank you also for responding. I know eventually I will have to cut my hours at work. And as far as the friends and family with the good intentions of telling us to take walks or exercise, or whatever the magic cure is. I say sock them in the nose ;-)

    coolma: The front of my brain knows I am ill, but the back of my brain hasn't gotten that message yet. I tell people, but like the rest of us, we suffer from the "but you don't look sick syndrome" yeah except for the dark circles around my eyes and the haggard look to my face, and the fact that I could nap at the drop of a hat. Other that that i look great.

    Jole: So true, after seeing what my neighbors went through, who cares if my house is a mess right? And it has been a busy week. Either take me as I am or don't bother, and if as i am involves a messy house so be it.

    Stormy: I think i spoke to you a few times on other stuff over the years. You too are correct, why waste what little energy I have on guilt. I can use that energy for getting into my jammies for those naps I love so much :)

    Ilovepink: All great ideas. I will use every one of them, maybe do a fast pick up and forget about it. Too bad prohealth doesn't offer photo albums, we could send in pictures of our messy houses. Maybe even have a contest.

    Deliarose: Yep, still work, have no choice. No hero here. Just doing what I have to, to keep a roof over our heads and food in our stomachs. I don't want sympathy, maybe just some empathy and understanding, but I know people do not understand what they can not see. I am moving toward not caring what other people think.

    Fibro: Thanks for understanding. I am at the point where I can not even do the errands and chores any more. I usually stay in my pj's all weekend, and just nap off and on on the couch all weekend. I will keep you posted on what the doc says tomorrow about my husband. Thank you for your prayers. I too am praying it's just the fact that he is getting older and sometimes older men have prostate problems that are benign.

    Anyway thanks to all of you. I appreciate you taking time to respond.

  10. Marta608

    Marta608 Member

    Dear Cindy,

    You have a bad case of the Guilts. It seems to come with this territory so I'm not going to tell you that you "shouldn't feel that way". I don't know of one person with CFS - let alone your other concerns! - who wasn't a go-getter at one point in their lives. This makes us feel even more like a slug when we compare then with now. (Just ask me.)

    Please, as a valued lurker, go back and read your post as if someone else had written it. I think you'll have a good picture of what you're requiring of yourself and I doubt that you'd ask it of anyone else.

    Be kind to you. See that icon? That's you.

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