# Need advice and i need it fast >>



## HEIDIELLEN (May 31, 2001)

Hi , can you help me my sister has fbro. She has had it for about a year ? . I dont understand it fully but i try to be surportive to her. She has always had depression even as a teenager,so the family are used too her being not well and we all try to help but in our own way we all have our own problems as i have ibs and my mother has crohns. Anyway my sister has four children , ages from 1 / 11 so they are young . my neice who is 11 does everything around the house , washing , bathing the children , every thing that a adult does the 11 year old does ( and she is not happy ).My sister is married but she still put my neice down as her carer . My neice will have a lot on her plate as she starts secondary school after the hols, but will still be expected to do all the chores and look the little ones. She came to my house for the weekend ( i try to have her as much as poss) and told me she didnt want to go home and that her mum only wants her home to do the rest of the housework. She also said that when she come to stay with me or her nanny that she can still be a child and play . i feel i need to talk to my sister and tell her that her child is unhappy, but without her going up the wall and down again (surely her husband should be doing more to help , but instead he is always out )..Is it me am i not understanding fibro at all , should i just leave it , she has told her daughter and other members of the family that she will end up in a wheelchair within 6 months please help me , i love my sister but i am worried about all the pressure on my neice. Heidi


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## squrts (Aug 14, 2000)

im a complainer,bigtime!and i`ve learned something:it doesnt help,and it worries your family.negitive predictions like being in a wheelchair are more than useless,and i cant imagin the way its affecting that poor little girl.your sister MUST help herself.one little acomplishment can really bring up her spirits.i know all this is easier said than done,id do well to take more of my own advice,but she has to start somewhere.she needs to understand shes taking away her daughters childhood.best wishes,


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## Susan Purry (Nov 6, 2001)

Hello Heidi. It sounds as if your sister really needs some practical help around the home. People with chronic ill health and disabilities sometimes just can't do these things and they need help getting those tasks done. For example, becaue of the CFS I am not able to do 90% of the household jobs such as doing the grocery shopping, the housework, the laundry and ironing or sometimes preparing a meal. Fortunately (or unfortunately) I am single and do not have children. Now, over here in the UK, we have a benefit for disability which has a care compenent, which enables us to get the help we need around the home. An assessment with Social Services results in a Care Plan which details what help is needed, why, how often and to what degree. A person can then use their disability benefit to buy in care from an agency. I pay a friend to come in to my home twice a week to do things for me. Some people need to have someone go to their home every day to help them. I understand that there may not be a system like that at all where your sister lives, but getting in care/help from outside the home need not be an impossibility. It sounds as if someone needs to explain to her husband that he needs to help around the home. If her husband simply won't help around the home, and if your sister's close family can't help due to illness, maybe there is another relative living near by, or a neighbour or a volunteer from a charity or a church who is able to go to your sister once a week to do the grocery shopping and the housework for example? That might just help her a bit and ease the load on your neice. What support systems are there available in your sister's area? Can you investigate this further for your sister, or suggest it to her?


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## Susan Purry (Nov 6, 2001)

P.S Did you see my response to your post a while ago on this forum? I was wondering if your sister has access to the internet and all the wonderful sources of information available there, including reliable medical info, self-help strategies and so on?I mentioned the 'energy-envelope' idea. You may like to print off the info and give it to your sister? http://www.ibsgroup.org/ubb/ultimatebb.php...ic;f=9;t=001182 Chin up!


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## M&M (Jan 20, 2002)

I agree with Susan. I definitely understand it is impossible to do everything around the house with these illnesses, but it isn't her 11 y/o daughter's responsibility either. Perhaps look into all the things Susan mentioned. Anyway someone could be hired to go in and clean the house regularly, and do other things that your sister can't do? That would be my approach, poor little girl still needs to have a childhood!


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## Paige (Apr 4, 2002)

I know this may sound heartless, but tell your sister to get off her butt! It sounds like she uses the illnesses as an excuse and as family members you are being codependent or enablers. You let her get away with being the pain martyr. You have IBS, do you sit around all day and expect someone else to do everything for you? One thing I learned a long time ago, you can let the illness control you, or you can learn to live with it. Anyone who projects themselves into a wheelchair in 6 months is letting the illness control them. I live in constant pain with overwhelming fatigue. I work 5 days a week, 9 hours a day and manage to get things done at home. I go to bed early, have learned to accept a less than perfect house, have demanded that my husband do his share (he does the shopping, heavy cleaning and anything else I ask him to.) If I had to crawl on my hands and knees I wouldn't let my children take on the responsibilities on an adult. Here in the US your sister would likely be turned in to Child Protective Services and her children would be removed from her home. It is easy to feel sorry for yourself, but when I see stories of horrible tragedy that leaves young people with no legs, paralyzed, or other traumatic circumstances and they learn to walk on prosthetics, guide their wheelchairs with their own breath and graduate college I still feel very lucky. My life must be easy compared to theirs.Paige


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## Susan Purry (Nov 6, 2001)

Heidi, how is your sister doing?


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## HEIDIELLEN (May 31, 2001)

Hi , well i had a word with her about all the strain on her 11 year old daughter, and she knew that she was not happy ? . i have also tried to speak to her about self help ( but she always says she is going to do these things but never does) I worry for her , but she has got in touch with some sort of help group so thats a start ( i hope ) . the day after we spoke she went out and got herself a wheel chair because she cant walk for any length of time. There is only so much i can do without her shutting me out and telling me to get on my bike . all i can do is be there for my sisiter and my neice. she is in the process of getting a lot more help, the children will be taken to a day creche so it give them all a break. the house work i dont know if she has anyone to help ( i am taking it one step at a time so maybe next week i will talk to her about getting someone in . With all this going on and now my mother is very poorly she has to go in for an op in 4weeks , i am begining to feel the stress at this min in time i want to run and hide.I hope she will get her self sorted soon and take all the help that is at hand . thanks for getting back to me HeidiI didi say to my sister that oi know she needs her daughter to help , but maybe she could sort out some kind of rota . so my neice would help around the house for a couple of hours in the morning and then she can go and play with her friends for a few hours. if they did it together then maybe it would take some of the strain of ,of their relationship


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## PeacefulHart (Jun 26, 2002)

Lots of good advice here. Susan's post is very helpful and Paige's post brings up a good point.Fibro is my worst problem. Along with IBS, depression/anxiety, the pain is often almost intolerable. If I gave up, it would literally kill me. Not only have I not given up.... like my sister, I push myself as far as I can to do what many might think is impossible. To that I say... It's only impossible if you think it's impossible.My sister, who is equally stricken, always quoted to me "The Bumblebee Theory"... no one ever told it that it couldn't fly (yet it's scientifically impossible).I believe that your sister is frightened and that is why she is reacting the way that she is.The most important concern is your 11-year old niece upon whom all the responsibility is falling. She needs support and she needs to be relieved of some of her responsibilities. It would be wise to look into some in-home help if it is economically feasible.Good luck


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## squrts (Aug 14, 2000)

very well put peacefulhart.i hope the bumble bees dont get wind of this,they may stop flying if they find out its not possible.lol.thanks for shareing the bumble bee theory.


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## Rocki (Aug 27, 2001)

Heidiellen, hi. Perhaps i am not understanding something here but why would your sister need a wheelchair? If she can't walk very far without pain, it sounds as if she has something else besides fibro. going on with her. There are so many things that come to mind that i won't list them here but she needs to have a physician get to the bottom of her pain, walking problems and treat the depression. As far as parentifying her daughter, she sounds as if she needs to address that in psychological counseling or therapy (her triangle relationship with her husband and her daughter). As well, it's possible she needs to address what's referred to as "the sick role" and what "gains" there are for her in that role. This is NOT to take away from your sister's physical condition. None of us can possibly know what that is. I can tell you that "you can't think your way out of fibromyalgia" but you can learn copeing skills and problem solving to help with your daily living activities. As someone who is completely disabled by fibromyalgia, it isn't a "black and white" illness. Fibromyalgia is a syndrome which means it is made up of a group of symptoms. There are many illnesses that are more commonly clustered with fibro. such as migraine headaches, vestibular problems(balance and perception problems which can account for not being able to walk without assistance),IBS,full-blown GI tract problems such as not being able to swallow, and on and on. But. Whatever level of illness(es) your sister has it can be treated IF she is willing to change her belief system and seek help. Best wishes to you and your mom during an especially difficult time. PS, here is a page i would recommend as reading on the illness. It is comprehensive and written by a medical doctor who has fibro. herself. www.sover.net/~devstar


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## celticlady (Aug 6, 2001)

Heidi-you have gotten some good advice,may I suggest you check out some books from the library for your sister,one good book is "fibromyaLGIA and chronic Myofascial Pain Syndrome,a survival manual".Paige- IMHO,I think perhaps you are being a bit too harsh(without knowing the whole story) I strongly suspect she has undiagnosed(or not treated)depression along with the fibro.Telling her to "get off her butt" is only gonna work if shes not depressed. If she is diagnosed for depression,and gets help,this will help her and the whole family. Again,I respect you and your opinion,but this is my take on the situation. Of course she should do as much as she can each day! and may need some gentle "pushing".....Of course the 11 yr old should not bear the brunt of all that work!However,a little work wont kill her,either.There has to be a balance.I think involving the doctor to advocate for home-care help for her,and a talk with the hubby is in order.(he can jolly well help,too!)My husband could never cook,I always did it,now after major surgery this spring he HAD to cook,and hes really good at it!Anyways, Heidi,good luck.Send me a private message if you wish.


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## HEIDIELLEN (May 31, 2001)

Thanx for reading my post all of you. My sister seems to be getting things sorted she has had someone around to tell her about all the help she can get. I dont think we as a family have been hard on her , we give her all the back up we can and more. I love my sister and would do anything i could for her,but she needs to help herself (which she is now doing ). As for her husband he is never their and does not understand nor does he want to, i have had full blown rows with the man but nothing chages (again this is for my sisiter to change and give him a kick up the arse if she allows him to treat her like dirt then he will ). If i didnt tell her that her daughter was not happy and she found out she would never forgive me. It turns out that my sister sat down after i spoke to her and had a heart to heart. Heidi


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## celticlady (Aug 6, 2001)

Good luck,Heidi,sounds like things are going a little better.


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