i need some venting and some encouragement

Discussion in 'Fibromyalgia Main Forum' started by ilovepink4, Mar 31, 2006.

  1. ilovepink4

    ilovepink4 Member

    i am so frustrated and i have given up wasting my breath to my family members...(dh, 19, 16, 9, and 6 yrs old)

    my dd has cerebral palsy and has personal care attendants working in our home for various amounts of time daily...up to 13 hrs if i want ....i am also hired as a pca when we don't have help...i try to only take the hours where there isn't much to do....basically be there to take her to the toilet, turn the channel, put on her music, feed her, get her a drink, etc...i have the other girls give her showers and dress her etc..the heavy stuff...

    i am going out of my mind with frustration over the lack of privacy in my home...i have workers standing in my bedroom while i am in bed because they have questions, or what ever....today, i was in bed (i aminbed everyday as i am in a big flare...also, have come down with a sorethroat) and my pca's sister stopped over to pick up something ...they both were in my doorway making introductions and thr sistr has stayed now instead of just stopping by....my dd likes the extra company so i haven't said anything..who am i kidding? what would i say? i am thr biggest pushover....

    my room is a total mess with folded laundry, bins of photos i am working on, books stacked everywhere and catalogs, etc..i haven't felt up to picking up...on top of that embarrassment i was due for a shower...you all can just imagine the scene!and i have a stranger in my doorway..also, we have a handyman working everynight on undone projects ...so he is traipsing through,,.,he just comes and goes so he won't bother us...i have a cleaning lady once a week because i finally gave in...she is here 4 hours at a time...plus every weekday, there is a pca from 8 until 1;00...then they are back at 2;30 until 6;30pm...on weekends they come 9am to 3 pm....

    i need their help...it is something i have to live with...oh, and worst of all we had a computer repairman here yeterday, my dh called and siad to get up and let him in...show him where the cojputer is...so, house is messy , i am messy and sick....then when it is time for him to leave, he has to go up the stairs to get out..there are 2 set of stairs...one is blocked by the handyman spraying paint...the other is a little spiral one tucked in the corner of our bedroom..,.yes that's right, he had to exit through my messy room with me in my bed....i just can't take the shame anymore of being caught with a messy house, or in my pj's...sorry, i can't take wearing clothing when i feel awful...

    do the rest of you all have similiar situations with lack of privacy when you are really flaring? i know you don't have the pca issues we have....

    we know that someday dd iwll have to move out so she will be settled in life before we die...we hope that it will happen in the next 10 years...but, she is not ready yet...sometimes i fantasize about building an apartment for dd connected to our home....but, i have to turn her every couple hours in the night..so she needs to be close for that....also, i think about building a cottage for her and a couple roomates on our property...dh likes that idea...the roomates can cobine their pca hours to have 24 hour care...

    besides that issue, do you have the same prob'sd with privacy...
  2. halo52208

    halo52208 New Member

    I know the pca's need to ask you stuff, but they should know what to do. One they shouldn't have their family over while they work. You really have your plate full.

    You need to set some time for you to be alone. Even if it's only an hour, but more if you can swing it. When you get to that point where you need to raise your white flag, let the others know. Make a sign to put on your door that says Quiet time. Make this a time where no one is to bother you. If they do, it better be that your house is on fire. Anyway, you get my point. You need your time to mellow out and rest. Because otherwise you are going to be no good to your family.

    The idea of getting your dd out into her own place would be good for you guys. I know, it will not be an easy step. I would like the apartment attached also. It's hard to let go of kids, especially when they need you so. You need to be able to see your dd on good terms, like a visit. To be there as her parents and not her nurse. It will be a very hard step for you guys, but a good one.

    But for now, baby steps. Work on getting alone time for yourself. Try not to worry about the way you or your house looks. Even normals get that way sometimes.

    I want you to know that I am proud of everything you've done and are doing. We are here even if you just need to vent.

    {{{soft hugs}}}

    Halo
  3. ilovepink4

    ilovepink4 Member

    i had typed a big ole response, hit the back button to look at something, and poof...no more reply...eeeerrrr

    i love the sign on the door idea...very good suggestion...and the idea of an hour of alone time...i can't think of one hour per day that i am completely alone or off duty...

    bet- we were separated at birth...i almost left my dh during the 2nd year of my illness...i wanted my own space...couldn't hack it here...he was always pouting, etc...now he helps more ( i didn't leave) but he really doesn't get it...or seem to feel bad for me...can't wait until he need his depends changed (he is 12 years older than me) some day he will see the flip side of this...

    and halo? i am second guessimg who said what and i don't dare try to look back againj!!!!i am so jealous of the quiet life at your moms..(or was it eileen? ..i have no memory cells in my brain!...).i would hate when she had visitors too...i appreciate your hugs and your pats on my back...i was crying and laughing at the same time while reading your posts...thanks for listening! -pink
  4. ilovepink4

    ilovepink4 Member

    is it just my conputer or did bet64's reply disappear/? I KNOW i read her post and now, i can't find it??? or am i doing something wrong? very odd!

    halo, i just read your profile ...wow, what a nice family you have! soon to ber 2 sons in thr military! wow! and a dd almost grown...i like to garden too-flowers for cutting mostly...my sons likes tomotoes so i usually grow a coupld of those, too....crochting, i want to re-learn...enough to follow a pattern..and i am curious asbout raising the butterflies...can you tell me about that? it sounds peaceful ..and i was also curious about your spiritual life part...do you mean like religion or like you enjoy stuff like energy healing, chakras, astrology, psychics thr afterlife, etdc..i am into reading about all that stuff..i am just so curious about it all! i am catholic besides...but i love to read about wicca and native american stories and stuff..

    anyways, i am just being nosy...i love to learn about other people...but if youwould share about thre butterflies that would be great! thanks...oh, are you able to work still? or was that your past job? i don;t work ...i stayed home with the kids, got sick, and now, when i would have gone to work i can't and won't be eliglible for disability...no work credits...well, i guess i am earning credits as a pca for my dd...ok, shutting up
  5. halo52208

    halo52208 New Member

    I wonder if she accidentally deleted it? I have done that before, went to edit and hit delete, I hate that.

    Your not being nosey, I am happy to share my life, that's how others learn. Just like all the stuff I have learned on this board, it's priceless.

    The Monarch Butterflies live on Milk Weed plants. It took years to finally get them to grow in my garden. But I went to this fair where they had an exibit of them. He told me all you have to do is go find a milk weed plant and dig it up by the roots and transplant it.

    After I got them to grow, I watched them for catapillars. If you look under the leaves and see a tiny white egg, that is a catapillar. The butterfly lands on the leaf and touches her abdomen under the leaf to lay 1 egg. It only takes about 10 to 14 day to mature into a full size catapiller.Then they find a spot to make there cocoon. That takes about 7 - 10 days to hatch into a butterfly.

    I take the catapillars off the plant along with some milk weed. I put it in an aquarium, so I can watch them indoors. I refresh the leafs daily because they eat a lot.
    When they first hatch it takes a couple of hours to fill up their wings and to dry. You don't want to touch them when they are wet, they are very fragile at that point. That is how I got the one to crawl up my arm and onto my head.

    To learn more go to: monarchwatch.org

    I am changing my picture so you can see the one that I am talking about. Then I release them outside.

    The spiritual side I am talking about is with Psychics and the other side. The other side I am talking about is Heaven. It is three feet off the floor and is a duplicate from our side. Except for a few things that they have, that we don't. I learned a lot through Sylvia Brownes books. I found a good honest pshychic on Ebay and had a reading done. She even was able to get me to smell, which had to do with a past life. We grew close through all the readings I had done and the things she also learned by doing theme.

    You can check her out at: Sylviabrowne.org

    Feel free to ask me questions anytime.

    Hugs, Halo

    Oh, yes I am still working. Not a lot of hours though. I'm hoping my body gets use to it so I can work more, need the money.[This Message was Edited on 04/01/2006]
  6. NyroFan

    NyroFan New Member

    ilovepink:
    I do not have privacy problems, but when I was reading your post I thought you had a good idea: an extension on your home or a cottage. I had a cousin who did that for her ailing and failing father and it worked out well. He had his own little place, but was close enough for my cousin to get to him. If you have the land...why not? Sounds good to me.

    n.f.
  7. Cromwell

    Cromwell New Member

    I think you should make a sign or buy one that says something like:

    "I really appreciate everyone's help but when this sign is up, I really need some private time all to myself."


    THANK YOU I APPRECIATE THE COOPERATION


    i KNOW WHAT YOU MEAN. wHEN dANNY WAS YOUNGER WE GOT WORKERS IN THE HOUSE FOR HIS pt ot AND SPEECH, plus we got respite workers when we wanted them, up to 86 hrs a month. I only ever used the respite workers for about 12 hours a month as I felt the same way, where was my privacy and I wasn't really ill then either, just the start really of getting flares.


    I had to tell the workers that if my door was closed that was for a reason and I hoped they understood. The reason was that Danny would scream all the time, then fall asleep for 30 mins, then scream again, etc, so I was so sleep depribved, I used the time to just relax a litle, plus it was time I did not have to have himin line of sight.


    You certainly have an awful lot on your hands and I want to pay ho,mage to the courage and commitment you are showing. Well done. I award you a huge pat on the back.

    I honestly think the sign is your only salvation.


    Love Anne C
  8. leubie

    leubie New Member

    Hey Pink---- I hope I do not offend you but when i was reading your post for some reason I saw the humor in it---------I was thinh-king what could happen next and HERE COMES THE HANDYMAN STROLLING THROUGH YOUR ROOM to leave!!!!! It just reminded me of some comedy you might see on t.v.!!!!!!!! I hope I did not make you mad!!!!--------Yes you do need your privacy ----everyone does------i think the sign is a good idea and the cottage too.----------Take care of your self if you can-----LOVE TO ALL---------LAURA
  9. ilovepink4

    ilovepink4 Member

    who knows who will bw in here next???
  10. 69mach1

    69mach1 New Member

    if you haven't figured it out...do search engine...i will try to rember myself...but i have a feeling that bet64 was banned yesterday or the day before becaus she did a poll on marijuana..

    she had up a goodbye guessed she had been banned...but didn'treally understand why because someone else here on the board posted something similar ...and i did recall someone doing that...but don't ask me who iforogt...

    so she said goodbye and if nothing comes up under the searh engine that is most likely why...it is in the message rules...

    so sad


    jodie