Letting people down...

Discussion in 'Fibromyalgia Main Forum' started by gurlinottawa, Dec 27, 2006.

  1. gurlinottawa

    gurlinottawa New Member

    Hi everyone,

    I have been going through some learning the hard way lessons this past few months with regards to my inability to follow through on work or commitments do to unexpected pain and ill health.

    I need your support for this emotional time. I commit to do things and then i cant because I am not well enough.

    or I think I can perform the job or evening out, and then I cant. Peoples anger and disbelief and rejection of me is very hurtful and I know part of any disease management.

    for example, I am a student and had a field placment, 6 wks, in my choosen field Early child hood education, daycare, very busy and less possiblefor me as I get older... when I graduate I will work in more of an administrative role since a full day of daycare is not very poosible...anyway, i had to modify the placment hours that i was to work because it was a stressful center and basically the director of the program thought i was just trying to take the easy way out and didnt believe my illness!! This was so hurtful and has cuased me great strain since she wouldnt agree to reduced hours in my placment... she also by the way works with children with disabitlities, and here she was with an adult, not dissimiliar to the children she works with and she just rejected my needs to be accomodated due to a disability.

    also, I accepted a job doing labor type work back when I felt fine! and since this disease sneaks up on you, the flare ups, I wasnt able to complete the job like i thought and have had to leave the people at the last minute with no worker to cover their needs. I sent a letter and explained that my condition, and that I am sorry that I had to learn at their expense my inabilities to do certain jobs, I will nto take jobs like that again, which in itself is emotionally difficult to deal with, more limitations!!

    also my son, 16 years old, just refuses to accept that he needs to help me. His spoiled attitude is making me crazy. Hes always like if you need anything just ask! this is usually when he has no money and needs something from me, but for me to ask for his help is to stressful cuase I have to deal with his attitude, or he has to do whatever he needs first before he helps me...

    I know that in time I will become more used to this behaviour from people and get used to what I can and cant do, and learn that if people cant accept this from me, then they are not truly caring for me ... but my son I cannot deal with... I wrote out yesterday on a paper so I remember, not to ask him for anything, this only leads to expectation and expectation leads to disappointment...

    If i was on my own its almost better, cause there is nothign worse then having someone around who could help you and doesnt... I would rather be alone then have that let down...

    so i will learn to expect nothing from anyone, but, since i have lived on my own since i was 14yrs. old, i feel so out of fight, so out of the strength that is required to take care of yourself and advocate for yourself everywhere!! I want someone to help take care of me... but this is not possible.

    this topic then flows into boy girl relationships. I have had and on and ooff again relationship for 8 years, but in short I am not convinced that this man would be capable of taking care of me if and when the time comes. It requires a strong person capable of sacrifice to be with someone with a disability that is uncertain on a day to ay basis. but ofcourse, I am only 36 and would liek to meet a man and be in a relationship, but the " hey nice to meet you, I have fibromyalgia, how do you like me now" doesnt seem to be a good selling feature... doomed to a life alone?!! Not that I mmind my company at all... I really enjoy my time alone, and quit frankly Im not sure I have the strength to look after myself and the needs of another person!!

    Gosh this is alot of rant!! if anyone is still with me...lol pick a topic, I would love to hear your experiences or feedback on my journey at this time, I know in time it will become more common, but it is all new fro me now...

    peace and thanks in advance for the love!
  2. sascha

    sascha Member

    an educational course/field assignments such as you describe. i certainly do understand the incapacity cropping up, and the difficulty in getting other people to truly understand what you face on a daily basis as well as the dreadul disappointment, discouragement and guilt you must go through.

    i have CFIDS, and often can't follow through on commitments of any nature. my family is pretty well trained to accept this. i still have expectations for myself as far as responsibilities to family and will automatically volunteer, for example, to put together a dinner for everyone- then it is an awful experience trying to follow through. the last time i tried this, i wound up on the floor with everyone else taking over. i had to go to bed.

    ridiculous! i am learning to say 'I can't' but sometimes only after painful experiences.

    but commiting to a professional plan, the way you have, is a difficulty of a different magnitude. i admire your ambition and wish you the best of luck. hope it works out for you. best, sascha
  3. gurlinottawa

    gurlinottawa New Member

    It is so helpful to join together in these situations and to relate the similiarities in our experiences with the same things ... commitments, plans, ect. My saying Ive pretty much adopted now is, " Im in, as long as Im able!" Its the presupposed thoughts of others, and I could be totally wrong, so I am learning or trying to be more up front about how Im "really" doing.... when I think others are thinking Im lying or just trying to keep my options open.. but I do think that sometimes other people, and when I was well I have been guilty of this in my younger days to, people just dont know what to do, or how to react, so they do nothing, or the wrong thing.

    Thank you for your encouragement and sharing your experiences, please continue to share, it really helps to hear others relate, and to know, Im not alone in this.

    Peace and hugs back at cha!!
  4. mejlee

    mejlee New Member

    I feel so much for you. I am 35 and have a 15 yr old dtr.
    It is the same for me with her except she always wants me to drive her and her friends! As well as clean the house (she won't even bring a dirty dish to the sink) and do all of the laundry and cook. I love her dearly but at times it is too much.

    I rent a level in my mothers house because I can't afford rent anywhere else on my SSDI income. I can't get disability housing because where I live it is all in senior housing complexes.

    When my disability was starting to act up I was in school. I received two AAS degrees a one yr certificate and 5 professional development awards. I am a member of a high IQ society and yet people treat me as if I am stupid because I am not working!

    I don't know if you have read "spoons story", but I thought it was wonderful. I gave a copy to my mother and she said it was "stupid" and "too long". So I have all but given up on family. As far as relationships... Well I agree you. How am I supposed to date when I don't know from one day to the next if I am going to be able to get out of bed. ARGH!

    Now lets talk about friends. I try and explain that I can't make plans too far a head of time and that I feel bad when I have to cancel. They will say, that's okay, I understand. But then they complain about me to each other behind my back. And why am I expected to drive 20 minutes to their house. Why can't they come to mine!?! If I am sleeping while they are awake, or vice/verse, it is my fault that I can't do things on their schedule. And if I say something about it I get the "you must be depressed." NO!!! Believe it or not I am not depressed... I'm just mad at this point.

    Okay, I just wanted to say you're not alone! But apparently I wanted to rant a little.

    You know you are always welcome here! And we won't get mad If you don't pop on-line for awhile. We will ALWAYS understand how you are feeling. And we will love you unconditionally!

    One of your FM/CFS buddies, Jen
  5. zerped

    zerped New Member

    I'm sorry that you have to deal with this disease in such an environment. Got no kids, so I don't know what to say about that. I've been toying with the idea of going on a date, just to see if I could manage having a social life. I took an old friend to a show. I had planned in advance, and took my necessary 30-min. breaks every two hours, so that my time with her would be during one 2-hour "active" period. After all my planning, what was the result? SHE had to leave after intermission, because SHE was too tired! I had to share that with you guys! LoL

  6. gurlinottawa

    gurlinottawa New Member

    thanks for your relating. Im sorry to hear about your moms response to wanting to help her understand. And way to rant!!! lol

    does anyone know if its possible to keep the contacts of the people who reply to your posts? Like in hotmail you can have contacts addresses or favorites, as the wording goes?

    thanks and I love to read the stories here, and love that this is such a sharing community.

    peace folks
  7. gurlinottawa

    gurlinottawa New Member

    Life is a funny thing eh!

    I do think sometimes, because we have to be so aware of our illness, that we forget to be alittle more forgiving of ourselves. I know I am and have always been my worst enemy. Raised by perfectionist authoritarian parents, the " give a 100% or dont do it at all" even to the best of my rebelling, still wore off on me... and so I expect myself to be ... well, i hope not perfect, but together i guess.

    so when i hear your story that the other person left... I think that thats a good lesson for us to remember that other people we may date, have all their own crap toooo. No ones perfect and true love, will identify itself through all adversity.

    thanks for the story!

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