Does anyone else seem like they just cant live with this disease anymore?

Discussion in 'Fibromyalgia Main Forum' started by fmfriend, Nov 27, 2010.

  1. fmfriend

    fmfriend Member

    I used to be so happy had so many freinds full of life and energy and now i cant even play with my kids and orgaize my house.I cant have freinds couse they dont get it of course. what do you do to survive?
  2. fmfriend

    fmfriend Member

    PLEASE i JUST CANT COPE ANYMORE. no freinds,becauce I FEEL SO EMBARRASSED ABOUT MY HOUSE.,EVERYONE ELSE HERE IN MY LITTLE CULDISAC HAS THE PERFECT HOSE DECORATED PERFECT LY AND SNUB ME. i,M NOT RICH LCK MOST OF US.CANT EVEN AOFORD MY vitamins anymore. I feel so inadacite. I love my daughter so much and feel so bad i cant be the mother I always dreamsd I would be.
    I hate this disease. No money for treatement eaither so I suffer.
    please help please respond I need a freind. Thanks FMFRIEND
  3. AuntTammie

    AuntTammie New Member

    I can understand how you feel, except that I don't have kids, spouse, basically very much alone almost all the time

    anyway, I am not really sure what to say rt now as I am really wiped out and foggy, but I just saw this and saw that you hadn't received any responses yet and wanted to at least let you know that you are not alone

    {{{{{{gentle hugs}}}}}}
  4. msbsgblue

    msbsgblue Member

    I am 63 and I pace myself and do one or two small chores at a time then rest. I take B-12 subliqual for energy. I take a short nap if and when I can.

    It can be done. I moved to a senior complex so most of the people here are in my boat and every one is friendly so I have friends again.

    LEFTYGG Member

    I didnt get fm till my kids were grown thank goodnees. just try small chores try not to worry about what neighbors think. i know thats easier said than done.

    how old is your daughter? can she just lay with you and read watch videos? thats what i do with my grandson. i watch him 5 or 4 days a week. he makes me move around which helps stiffness.

    try self massage on feet legs arms with a small ball. i work on knots in legs.

    everyday is gail
  6. greatgran

    greatgran Member

    I so can relate to your statement but sorry I don't have an answer.. Its misery to live like this. I am thankful my children are grown but I do have two great grans that need me and I am trying to help care for them..

    I wish I had an answer but don't..

    Hugs and Prayers,
  7. wyndi

    wyndi New Member

    I don't know how old you are. I do know that socializing is a necessity for some folks and not for others. I have lived with a FMS/fibromyalgia diagnosis now since 1995. As most here know, we usually live with a mis-diagnosis many years prior.

    If today I did not already have the dx for fms, I would not be able to get one. Like so many US Americans, we do not insurance either. So, no professional treatments here either. I can tell you that if you have a computer, which obviously you do, you can do your own research on daily techniques and self-help tips for daily living. While insured, I tried every prescription known for the disease, and each one had side effects that were worse than the illness.

    Until someone else walks in these shoes (which usually includes ace bandages around both ankles and or they fight this dragon, they do not get to have an opinion on my house, my economic status, my social status or anything else in my life. If they snub me, it is their loss, because I have more to offer than a perfect body. Besides, I wouldn't want to be in the company of such people anyway. Negativity is not helpful with this disease.

    I have two adult children, two grandsons and one 6 year old step son that we have 50% of the time. I am so grateful for the 6 year old. He keeps me focused on something besides my pain, the pleasure of a child and keeps me motivated to move. I am not minimizing how you feel as a mother, but I can tell you that I am a much better mother with him than I was with my older children and not sick. With him, I cherish each activity and every hug and smile.

    I have found the best way for me to have a "good" life, is to simplify. Think Asian design, fung shui (?), Amish and any other way. Just keep life simple. Do stretches and range of motion exercises on a daily if not twice a day basis. Drink plenty of water. Make your bed comfortable. I sleep on a Coleman air mattress ($20 at Wal-mart) on top of a mattress, no box springs. I have on top of the air mattress...foam egg crates from Wal-mart (twin size about $10), folded old blankets, comforters, then my sheets. At the foot of my bed, I have two pillow cases filled with old clothes tightly packed into the cases and closed with rubber bands at my feet, to keep the pressure/weight of the sheets and blankets off of my feet. I have anywhere from 5-6 additional pillows on my bed for propping when needed (back, knees, hips, Quality sleep is imparative to someone with FMS. Helps defeat the accompaning depression as well.

    There are many other tips. I noticed a thread on that toward the top of this message board. I am going to check that out. OH....circulation is very important with fm. Not only stretching and ROM, but also massage or roll your body to keep the circulation more efficient throughout your body. You can also use a bath brush to gently brush your body with to bring circulation to the painful areas (it will also exfoliate). I know it seems like a lot, but once you get set up, it won't be. Learn to pace yourself. You can still have a good life, just different from what you expected. But then that's the way it is for everyone....even "normals." Hope this helps.

    [This Message was Edited on 11/29/2010]
  8. jole

    jole Member

    what a beautiful reply!

    What other people think is their problem! That said, I totally understand your feelings. Although I've only been diagnosed for the past 8 years since an extremely horrible flare, I've had this forever. When my kids were little, I felt like the laziest mom around. Watching all my friends whiz through their housework, take care of their kids, and still have energy to go out at night amazed me! If I wanted to do anything with hubby in the evening, I did nothing all day!

    As it progressed, even that slowed down until friendships ended one by one....they wanted to go and do; I couldn't...they couldn't understand. Viscious cycle. And it hurts!! I understand that also.

    It took me years to decide that my life as I knew it was over, and in order to go on I needed to accept the 'new' me. I wish I could have done that sooner. Once we learn to accept ourselves as we are, not as we want to be, we do much better emotionally.

    Instead of dwelling on the things I can't do, I can now be thankful for the things I CAN do. I don't try to run a marathon; I do a 10-minute de-clutter of the countertop instead. I can't go dancing; I listen to music as I rest. I can't play baseball with the grandkids; I watch from the sidelines and cheer. I can't even attend church anymore, but I can still watch devotional shows on tv and read my books.

    I am still blessed to be able to do so many things. Not as many as I once could, but enough. Even though I may live the life of a hermit, and my social life now consists of trips to the doctor and dentist, it's okay. I live each day for what it brings, not expecting anything, so I'm always pleased. Sound good?? Well, I wish I could say it's true. We all still have those days of wanting more and feeling sorry for ourselves *sigh*, but I no longer stay in that spot :)

    My house belongs to my hubby and I, no one else. He says if they don't like it, they don't have to come. Obviously they don't like Our meals are very simple. Some days it's a tv dinner, but that's okay if it's a healthy one. I live in pj's. Who cares? Work in 10-minute segments...pacing saves energy, and also helps keep me focused better. On a high pain day, it's the couch...snuggle with the kids and read stories. Yes, simple is better. If you can get someone to come in and help declutter your home and get everything organized maybe a few 10-minute segments a day will be all it takes. (Mine isn't decluttered yet but I'm working on it).

    These are my thoughts. We each have to find what works for us. But meanwhile, the most important advice I could give anyone is to really learn to accept yourself AS YOU ARE....and yes, I know that's probably the hardest one of all.....Hugs....Jole
  9. ilovepink4

    ilovepink4 Member

    I know, I know....We all feel this way much of the time. Luckily we all don't feel desperate at the same time! There is always someone here to talk to that can pick you back up...

    I used to have a spanking clean house and thrived on being a stay at home mom....and then things got more stressful and WAM! i got is soooo hard to ignore the dirty house and miss out on the activities with the feel judged by others when they don't know the full story...

    i make sure that ppl know that i am ill and not just lazy...i don't care if they don't want to hear about makes me feel like I have been cleared of the accusation of being a badmom..

    my kids are happy that i am always the summer, our house is the one that all the kids hang around at because their parents are at work all that says something...

    i like to read and watch dvd's from netflix...there is plenty to do if you have a computer can entertain yourself full time with that....

    keep your house a empty as possible....get rid of all clutter so that it looks clean even if it is dirty....if your home is picked up, with little or no visual clutter, you will feel better organized and happy....

    i live in my pj's....if i leave the house, i put on nice jeans with a cute top and a pair of cute boots....make up and hair done....if dont go anywhere much so when i do, i will be damned if i look like crap....

    like i said, i live in pj's...if i have to wear them, i make sure that they are cute...cute pj pants with a color coordinating tank top with a built in shelf bra.....or a cute set of pj's that i will feel fine walking to the mailbox in....

    if you prefer to get dressed, get yoga pants and soft flowing tops....always go for comfort but don' have to look like crap to be comfortable....

    i grew my hair out long so i don't have to look like i have bed head everyday....i bathe at night and twist my hair up in a bun when it is still wet.....i take it down the next night and it is curly....or it is curly for when i go somewhere....then i can do what i want with it...a cute style with no blowing it dry or curling can also french braid it and it will be wavy the next day....

    i bathe every other day in the winter really helps make things easier!

    i use tinted moisturizer so my face looks smooth and i wear Burts bees lip shimmer in gives my lips color but is just like using carmex!!!

    wearing a touch of dark ish brown/red lipstick or the lip shimmer makes your entire face look like it is fixed is weird...but it helps a ton...

    just these couple of things make me feel like i look better and then i feel better....don't you think, if you are ashamed of your appearance, you just feel even worse about your situation?

    if you are gonna be sick then be the best looking sickie you can be!

    I also was never a big believer in vitamins and supplements but, in addition to my pain meds, I am taking 2000 iu of vit D3 each day....and resverol and L phenalanine....i have been taking these for about 6 months and i am having a better winter so far...nothing huge but a little better....

    last of all, I have discovered that caffeine pills like vivarin.....and the RX phentermine...which is a diet pill and a reduce my pain temporarily and give me engergy to get through whatever it is i have to kids band hair eve isn't a guarantee but it will help....and i will still feel like poop the next few days...but, it makes the outing not so miserable....

    just remember to come here when you can't take it anymore....come here anyways but you can count on others that understand your situation to give you a hand up when you think you can't live another second with the illness!!!!

    check out some funny shit my kids ruined dot com...and $hit my pets ruined dot com ...sooooo funny!!!! and your tube videos that will make you laugh ....comedians and funny babies...or try people of walmart dot com.....

    ok...that is it....good luck! oh, will you be here for me when i crash? please?
  10. ilovepink4

    ilovepink4 Member

    bathing at night makes it so that i am always half ready if I want to go somewhere...i don't have to expend as much energy to get ready if i have already bathed...

    also, on my bed we have a big "fake down" comforter...i have a white one...i know, it gets dirty easy and has to be washed but to me, it looks clean to have white sheets and pillowcases, a big fluffy white comforter and instead of a dust ruffle, i have a box spring cover...It just wraps around the bos spring...easy to put on and take off...

    i think that a comforter is easier "neaten" up...i tried a bedspread but i never made the bed cuz i am in it all the time...and it always looked the comforter was better for us....

    the fake down can be machine washed...and it much cheaper!

    so controlling the environment and controlling how I look makes me feel a little better....