Why can't our family's except we have Fibromyalga .

[mollyanna]

This passed week I have had my daughter tell me the fact I am exhausted is down to me having gained some weight..I don't think she wants to admit that I am not well because I have always got on with my life.as much as I can even though I am in pain , I like to say I have Fibromyalga but Fibromyalga does not have me.

.Went to Church this morning and sat in the choir stall's and got up and sat down,throughout the service even though my back was breaking .

Then my daughter in law had a go at me the other day, another one who chooses not to accept .tells me it is down to artificial sweetener's as are all autoimmune diseases, according to her.Even though I don't use them I don't like sweet tea or coffee, do not like pop of any sort,.do my own baking, cook my own food, don't buy takeaways.and only rarely eat out or eat ready meals .So in my mind that argument stinks . The thing I don't see her more than 6 times a year . So how could she possibly know how I feel .Think it is about time I let them both see my vulnerable side

.My husband is the only one who see's what I go through.

[Hidden]

I am lucky in that my OH and son accept me as I am. I had fibro when I met my OH and then had my son who has just grown up with it... The hardest person I had to convince was my mum and after 23 years ( I was diagnosed at 25). It's only in the last 18 months she has actually accepted I am ill. I try to look on it as she just couldn't face the fact that her daughter was so ill so young, now she has accepted it.. But she did actually cause a lot of my problems leading to a small breakdown 2 years ago and it led her to have to to face the fact I was ill and wasnt going to get better and things have been great since, I love my life my confidence has returned....So yes let your family see your vulnerable side... And if they still don't accept it then there is nothing more you can do and take comfort in you husband who sounds wonderful

VG xx

[jjojay]

Hi , I do sympathise , I've had problems with my own family exsept my mom whom is brilliant she is 77 and says Heath wise am as old as she in my body and has been an absolute Rock. My daughter who is 16 was , unkind not sympathetic and wouldn't lift a finger to do anything . I gave her some literature that I printed off the web and she completely changed . She told me she had no real idea that it was so bad. I even had three visits to hospital and that never bothered her to change it was the literature that made her realise. I sometimes have to remind her too when she starts asking too much of me and am not capable. She has more care and understanding now than I ever seen her, she helps , speaks softly when I'm experiencing over sensory , she even brings me hot water bottles ect. She has been lovley, I did get so upset about it and cried , now that's all gone and I'm so glad . Try the literature like I did . I actually asked her option on it so she had to read it, then I asked her to help me with something I read and she did read it thinking I needed her option and advise . It was the only way , she nearly cried herself when she read it and now she is wonderful . Don't give up on those you love they will come round eventually . My son is great new also , not as good as my daughter but is getting there . H still asks too much of me but is more understanding than he was. X big hugs X

[ladymoth]

Hi Mollyanna,

I'm pretty sure that our families find it very difficult to accept fibromyalgia because it makes them feel helpless. If we have something like appendicitis, which runs a known course and is all over in a week or two, they can cope, but a chronic illness is very threatening, because they don't know what to expect. Basically, it's frightening!

We want our families to accept us, but we also have to accept their fear and discomfort around us, and the fact that they hope if they deny or ignore it, it is bound to go away. Unfortunately , many sufferers feel that they must try to deny it as well. You can't do this - you have to tell people that you can't manage what you used to, and yes - let them see that you are suffering.

My family have grown used to my illness now, and have cheerfully adapted to my needs - as I have to theirs. I still get offered quack cures, so I always say thanks, I'll try that - then ignore them.

I don't force myself to do anything like I used to, so I have a bit more mental strength to spare. I always tell people that I'm not valuable for what I do - but for what I know!

In a way, it's necessary to 're-invent' yourself if you have fibro, You have to learn to live for yourself, and not for other people. It's not easy, because women especially feel that they are bound to do things for others - adapting to the reverse is quite a challenge.

I still cook a lot, because I enjoy it, but my daughter does most of my housework, and seems quite happy about that. She and her fiance like to have a hot meal when they come in from work, and if that means an hour with the vacuum at weekends, they feel it's a fair swap. My darling daughter says that she would do everything for me, and though I hope it never comes to that, I'm sure she would.

So, Molly, don't sweat the small stuff, take no notice of other people's attitude - they'll get used to things, and if they don't it's none of their business!

Moffy x

[Bella2012]

My mother has fybro also,and a breast cancer survivor.She knows and understands the pain...but depends on me and wont do anything to help me.Its almost as if theres not a thing wrong with me.Ha!!! The entire reason she moved in with me was so that we could help each other.She had no one....she didnt even raise me but I felt obligated because no one else would take her in. Now,Im moving out of my house thats paid for and renting a house with my daughter and son n law....SERIOUSLY???? Oh well...life goes on ....: /

[Allpainedout]

So sad to hear the same stories as me concerning families & friends not understanding fibro ????? I went on a pain management coarse some years ago it was one afternoon a wk for 3 months they did a family day half way through and even though my hubby was understanding before he came , after he was there with drs and physios as well other fibros he learnt so much from that day it helped us so much !!!! They put us in groups and the non sufferes were pretending they were sufferes and vice versa then they asked questions ,, it was amazing how they saw us and how we saw them !!!!! Being in each others shoes for one afternoon has ment a lifetime of understanding !!!!!! Only wish I could have taken the whole family !!!! Because my mother inlaw tries to compete with me and always says that because she's old it's far worse for her !!!!!! She's in her eighties and only now waking up at 5 in the morning !!!!! Hubbies says that's a lie in for me as my pains so bad at night !!!!!!

But of coarse I'm not old so I'm not ill !!!!!!!!! I'm 50. And feel 90

I was told by a dr to down load info about fibro and give out to family , I tried that and she played hell with my hubby saying I'd belittled her what did I think she was. ? Igronant ????

Would have loved to have said yes you are !!!!!!!!

These people should know better but for some reason don't !!

So please try not get upset , I know its easier said than done , but us worrying stupid about others and they not giving us a second thought !!!! Take care x

[mollyanna]

Thank you for your reply ,I asked the GP about the pain clinic last week, but she sent me for xrays of my back.first as I have slight scoliosis and degeneration.and my ( tail bone) can't spell proper name for it even spell check doesn't understand what I am trying to type. It is not were it should be but veers to the left some how, and the last xrays were done 15 years ago .So she want's to see what is happening down there first.

I wonder if all pain clinic's do what yours did?