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The UKFibromyalgia Forums • View topic - Hello



Hello

Introduce yourself and find fellow sufferers in your area or who share the same interests.

Moderators: perseus, *Lisa*, FluppyPuffy

Hello

Postby plodonsue » Fri Oct 30, 2009 4:48 pm

Iv had Fibro for about 6 years but was only diagnosed 2 yeas ago. I was gust wondering if anyone has the following issues and how do they cope with it. I am a 28 year old single parent and there child is my carer, does anyone feel like their letting their family down and how do you cope. Also I constantly get told that it is all in my head and to snap out of it. again how do you cope. Also like I said i am house bound, Iv tried to get DLA but they said that Im not disabled enough. any Ideas please. Iv felt so alone in the last 2 years and felt crazy for the 4 years before I was diagnosed.
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Re: Hello

Postby gillshutt » Fri Oct 30, 2009 5:57 pm

Hi and welcome to the forum :hugs:

Firstly you are not letting your family down, you didn't get this illness on purpose, you never asked to be like you are, it's not something you have any control over... you have FM.

DLA.. ask someone from CAB or benefits and work (see links on the benefits board) to help fill out the form, give a copy of your answers to your gp so they know what you have put. They can also help with an appeal if necessary.

Snap out of it? Tell them... no I can't put that on here I'd have to ban myself :evil: Take no notice, tell them you have a CNS (central nervous system) disorder and thank them for thinking you are faking it, you didn't know you were that good an actress :roll: If it's family and friends, print off info about FM and give it to them to read, give them a list of symptoms to see. If they won't look at it, leave it lying around (the loo is good) and at some point they will probably give it a look through.

Anyway you now have us to help and if you need anything you know where we are :grouphug: Just shout :D
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Re: Hello

Postby LinzWorld » Fri Oct 30, 2009 6:58 pm

Make sure your child gets a carers assessment done by social services and see if the Princess Royal Trust have a carers centre near you - they can offer advice about what other help is out there.

Is it family/friends or your doctor telling you to snap out of it? If it's the latter, change GPs asap.

Applying for DLA is tricky - the benefitsandwork.co.uk organisation have great info though. It's crucial that you have a suppotive doctor that knows specifics about how you are affected (e.g. how far you can walk without considerable pain, how much help you need, etc).
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Re: Hello

Postby shazq » Sat Oct 31, 2009 11:49 am

Hi :welcome: to the forum.

Sorry to hear you have fibro, hope you find the forum helps to answer your questions, if not just ask.
We are very friendly and helpfull. So just mix in. :wave:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: Hello

Postby FluppyPuffy » Sat Oct 31, 2009 7:58 pm

:wave: :welcome: Sorry to hear how things are for you. I've has some similar things happen to me. When my symptoms first showed, I collapsed at work, ended up with a trip to A&E, was signed off, ended up not going back and was retired on health grounds in 2001. Thru everything that was happening to me, the one thing that stuck most in my mind was my own mother asking if I was making it up to get time off work, plus comments about it being in my head as well. I often think that I have failed and let everyone down, and got so bad that I ended up having CBT based therapy last year. It helped but I still have the thoughts, esp on a really bad or stressful day. My OH has recently changed his shift pattern so he's at home a bit more as I seem to be needing more and more help. I don't really cope, on a slightly better day I make an attempt to function. Hopefully you'll find things on here that might help you, plus it's nice to know that you're not alone. There's a lot of friendly support on here


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Re: Hello

Postby unigirl1981 » Mon Nov 02, 2009 3:19 pm

i am 28 too and my 6 year old helps out loads. my kids(4 and 6) are seen by Barnados who have a young carers service which is fab.

they take them out , have family outings and help them 121.

google Barnados and see if they can help!
Just because you have to park in a blue bay doesn't make you any less of a person!

I am the Chair of Doncaster and District Fibromyalgia Support Group; working with FMAUK and loving it.
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Re: Hello

Postby plodonsue » Mon Nov 02, 2009 6:40 pm

Thank you so much for your kind words and welcoming me to your forum. My mum is the one that tells me to snap out of it, my boyfriend used to also but last year he got his man flu and hurt all over, I told him to snap out of it and asked him how he feels about it and asked him to imagine living with that pain and worse everyday of your life and then being told that its in my head. Its funny but he has been an angel since and has even asked me to marry him although he is not going to be living with me until were married, Iv been on my own for 9 years so im still getting used to the idea of living with someone is what im getting my head around. Iv disowned my mum as she told my whole family that i was fat, lazy and a phycipathic lieing little b who is after a free ride

My daughter goes to a club called young carers, its run by our local council. I moved house in July and have had a new docter and he is brillient he has put me on a higher dose of amitryptiline although i need to go back to see him about my tablets but he has never made me feel that im troubling like my last dr did. The dr has even put me through to a specialists who again makes me feel like he really cares how im feeling. I can honestly say that iv never felt like that about a health proffessional.

I have contacted my local MP who is discusted with the way DLA has treated my claim and has taken my case on. I have made the claim through a charity that works on getting people the benifits they are entitled to, they was also puzzled as they said that people get it for alot less than me. Dont get me wrong I know there is people out there worse than me out there. But i would like to be able to make longer plans then the ones im making, at the moment its a case of see how i feel on the day

Again thankyou so much for being so understanding, welcoming and informitive. I can honestly say that i dont feel alone anymore.

THANK YOU :D
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Re: Hello

Postby shazq » Mon Nov 02, 2009 9:36 pm

Just mix in and anything you want to know just ask.
Look forward to reading your posts. :wave:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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