the lack of help or empathy for this condition is killing me

Discussion in 'Fibromyalgia Main Forum' started by gurlinottawa, Nov 15, 2006.

  1. gurlinottawa

    gurlinottawa New Member

    hi all,

    I feel, wiped out.

    the fight to advocate for a condition like fibro is exhausting in itself.

    Happy news, finally got an appointment with a rhematologist (spelt wrong im sure) and a doctors note that states i can not work full time hours due to medical disability. Hoorah,

    still, people around me dont help, or really seem to believe my pain, condition or just how much it effects my life.

    I feel i have no one to turn to who really understands. I live with my completely self absorbed teenager who would have me cook him dinner on my death bed ...

    parents who just think Im lazy, a field placement I just had to drop at school because i requested dropping the hours to half days, the time they told me I would be doing my work anyway, school assingments for programming that is... and they wouldnt have it, again, people look at my me... im a vibrant red red red hair young looking dress punky funky kinda girl and think, Im trying to take the easy way out, Im lazy.... I ... could... and have... cry....

    any advice anyone.. I know Im not the only one with this. How do you make people around you, educate them to the need to keep life stress free... to limit my adctivities to avoid flare ups, or especially when you know youve gone to far, and evertying hurts, but according to this work slaved world, you need to work more and just such it up... how to I stop needing people tto understand would probably be a better question. but when I need support... I mean I cant even turn to my parents, when they hear I had to drop field placement cause of the limitations of my abilities, they will think like always, its me, im lazy, looser whatever...

    I feel so alone in this.

    I often wish I had a terminal disease, like cancer, then people would be like, oh sure whatever you need... can i help you... your doing to much... i know that sounds aweful, but its where I am today...

    I am sensory overloaded... i am mentally maxed out trying to advocate for myself, and still pursue my dreams, to finish school, something i never did.

    exhausted, maybe i should find a support group or something... this board certainly helps... It just hurts when the people around you... if I told my mom I had cancer, or MS she'd be all over me, now... its like.. not so much...

    but i know that those are other peoples standards they place on themselves and then on to everyone else, which is their problem but it hurts me.. like at field placement... they wouldnt let me cut the course in half... i am an early childhood educator in training... they work with children with disabilities.. I am one of those children grown up, and they just didnt help me... thats pretty hypocritcal i think.

    i should stop, Im sad, Im tired, I wish I didnt care.
    signed blah in Ottawa.
  2. debthereb

    debthereb New Member

    Really hard to make people understand what FMS is. I didn't know what i had for years and all my family thought i was just a lazy hypochondriac. Then i was diagnosed and was able to tell them what was wrong, they were really embarrassed. If your family still believes you are just lazy after you were diagnosed,you may be better off staying away from them. I think your son needs a kick up the backside.....he should care more for his mother.
    Good luck to you.
    What meds are you on? I can't tolerate anything,have tried anti depressants but can't take them.
  3. fmkitty

    fmkitty New Member

    Hi I wish you had more support from your family,Maybe you can print out info on fibro for them to read,Their is a letter on the web called Fibromayalga letter to my family,try to print that and give to family members.I know how wiped out you get I have fibro too,Hurt so bad some days I am in tears,I was put on new meds yesterday and slept thru the night for once.I wish all the best for you and you will get a lot of support here.
  4. i can so relate to how lonely you feel,and trying to cope with this illness.
    my family are a selfish bunch.i got a job only 16 and a half hours a week,thats all my fibro will let me do.its not enough to pay for my rent and hubby gets a small amount of sick money as he has spondalosis and angina.he stays home,i have to cycle to work each evening in all weather.his illness is recognised,my fibro/ME chronic fatigue syndrome,not.

    well now im working and having to pay the rent/perscriptions,and keep my gas and electric meter going with cash.ive had to decide to cancel my imternet.i just have to put my bills into priority.

    its so sad that my part time wage is expected to stretch so far by my cold,im ill and im blinking fed up.

    so ill be able to reply to you all until the end of november,then sadly you wont hear from me for some time,as my internet just has to be dont worry about not hearing from me,i wont be dead haha,but very angry that i have this illness.and that my visits to you all here must come to a end, for a while at least.

    why wont this illness let me work full time? its so unfair.i cant earn a living with a part time angry with my husband too.i always have to be the strong one in this relationship,and i find that with me being ill and tired,that i hate my husband just now.

    take care
    love fran
  5. chloeuk

    chloeuk New Member

    I have had an experience today that has changed my outlook on how people percieve me...I started with a new dr a few weeks ago because the old one made me feel like I was making up how I felt or put it down to depression. I saw my dr on Monday for pain relief and had to go back today for that time he has spoken with another dr who has experience of fm in her family and she suggested gabapentin..he also said he had looked on the internet to find out more about fm..I was so shocked that he had taken his own time to find out ways that he could help me...I was so relieved to have found someone that not only believes me but is trying to actively help has taken a long time and at times I wanted to give up, in fact I have said I would not go to drs again..but the pain got so bad I had to...and now I feel validated...dont give up...and remember everyone here knows your pain, knows you are not lazy...what the hell would we have to gain from faking an illness everyday for months and months...the answer is that our lives are taken over by an illness that no one can see or feel.

    Have you tried writing a letter to any of your family, maybe describing a typical week, have you read the spoon story? I have to say my husband has finally got it now after months of me feeling like he thought I was making it helps so much to be believed even if they cant help just feel so much better..I fronted my husband out and said..I dont feel like you believe me..and what would I gain by making it see me everyday and you know that no one could put on being ill everyday for a year..and he said you are right and he said he felt scared and frustrated that he couldnt do anything to help me...and I said the fact you acknowledge my illness makes me feel 100 times better...dont give up..I know its hard...just one day at a time.
  6. lavender14

    lavender14 New Member

    I have learned over the past 17 yrs. that there are people willing to accept my condition, and those who would rather not. I think they can not understand, and leave it at that and make us feel lazy and not taken seriosly as well. That we can just exercise and get better. Think about yourself, take care of yourself, and ask for help. Try not to concentrate on others negative views of you.

    Try relaxation tapes, anything for you time. My 18yr old daughter is a big help to me. She gets it. It has just been the two of us for the past 10 1/2 yrs.

    Take care hang in there, live for you-and not to convince anyone else you are sick. (except the Dr.)


  7. susabar

    susabar New Member

    I am sorry, I know what your feeling.... It took a couple of years for my co-workers were wrong about my illness...

    It's a very sad and lonely place.... some how I just keep going and I'm not sure how....

    I got away from "toxic" people even if they were my family members.... and try and keep trying to create a world in which I can function...

    I don't know if it's helpful.... i found meditating and listening to soothing music ( Josh Groban ) has helped me alot !!!!!!!
    Good Luck, I am praying for you ...
  8. gurlinottawa

    gurlinottawa New Member

    hey you fantastic supporting strong fighters out there!!

    Im near tears reading your replies. thanks for the support and if anyone reads this post, please dont stop the love and info or support or ideas I will keep checking to see if anyone added more posts to this thread.

    I will try to get the spoon story, and the letter to families of people with FM.

    I am supposed to go to my mom and dads this weekend to get away from having to push my son so much, it will be good for him and me to leave him to fend for himself for a bit, and to know that i have to get away to get relief, that should say something to him i hope!! but my thing with going to my parents is they are super perfectinist hyper disciplined people. I am not so much, its enough to manage what I can in a day, you know between the brain fog, the ADHD and the pain that shifts around my body like jelly, maybe if i ask if they believe me or not... and if not why not? perhaps just open a dialogue, but again, advocating for people to believe me exhausts me.

    I have to get a little tougher to not be so affected by peoples assumptions, and I have to get out of the BIG city. its cosmopolitan and so soaked in the achieve mentally do more work more, I live in Ottawa, government town.. right downtown... i want to live simply, in the forest, with simple people, like Im the type who makes her own purse instead of buying one type thing... and I believe a smile can change a persons day, and I believe that what is my experience is not another persons, and my advice or thoughts aobut another should be based on whats good for them, based on their experiences, ya know what I mean?

    anyway, thanks again for all your prayers and love and support, I cant wait to see the rhematologist, I pray pray pray that she is great!!! and thorough... and kind.

    peace and strength in the journey
  9. gurlinottawa

    gurlinottawa New Member

    I havent been on for a bit, and thought i would read if anyone else posted since i last checked.

    thanks for your support again. I going to post a new thread.. dating and fibro?

    I report that I have been blessed with about 5 off and on days of feeling rather well. I will take them! mind you, i have also been given 6 weeks off. if i didnt have to work, i would be great!!!

    luv and peace to you.
  10. Hawkeye

    Hawkeye New Member


    I know I am in the same boat as you but I decided that I really don't care and most days I don't.

    I found that the more people that I shared this disease with and my ailments the more alianated by them I became, I know I lost a job because of it and my family just doesn't "get it" I quit talking about it to anyone a few years back.

    I enjoy being strong on my own. I am not saying some days it is very lonely and very hard but it beats the confused looks, the whispering behind my back and the "you look fine" comments. That cuts like a if I don't say anything then people don't ask and to me that is fine.

    I have all my friends online who understand 100% and that helps sooooooooooooooo much!

    That's what works for me. People just don't get it.