Hello everyone :)

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Hello everyone :)

Postby Flaw » Mon Oct 08, 2012 11:53 am

I've recently been diagnosed with Fibro although I have suffered with the symptoms for over 10 years. I'm 28 now so I spent a lot of my youth in bed and wondering what on earth was wrong with me and missing out on all the fun things 'normal' people seem to do.

I finally found a wonderful GP who has a special interest in Fibro/CFS/ME and she diagnosed me straight away and was very disappointed that I had been 'dismissed' by other GPS as just having depression symptoms and told 'some people are just more tired than others'!

She gave me a wealth of information (including this lovely website), some sleeping tablets to improve my quality of sleep and some Nefopam for the pain. She's seeing me every week for a while so we can sort out what is working and what isn't.

So lovely to finally have everything make sense and find a forum full of lovely people.

Next step is the minefield of benefits- I've never been able to work without having severe crashes and have relied on my parents for help. My wonderful understanding boyfriend wants me to move in with him this month but I really need to be able to contribute. I hope there will be something I can claim for.

Thanks for reading and hello!
Flaw
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Location: Hertfordshire

Re: Hello everyone :)

Postby blueeyes64 » Mon Oct 08, 2012 12:16 pm

Hi and :welcome:
I'm having a bad flare at present so have been a bit fed up, but this is a great place to come and let off steam and just feel sorry for yourself I suppose sometimes !
No one I know really 'gets' this disease/syndrome, whatever it is, and so I waste my breath moaning to them :roll:
I can't help you with the benefits, I would have to be severely affected to go down that route and as my symptoms wax and wain like the weather, I wouldn't even presume to think I would qualify.Although a lot of the time I see very elderly people walking and getting around better than I :-) I can feel them looking at me as if to say, 'you're no but a young 'un' when I'm walking stiffly past them.
A lot of the time I push through the pain because I won't let this thing beat me, and also I find that keeping going does help, even like now when my back is in spasms it does help to keep going albeit carefully ! And anyway, I have no choice tbh.
OTOH I had some really good weeks during the summer and just the odd pain.
It's the nature of this thing I suppose.
I know there are different tiers in the benefit system to do with disability, and there is a forum about it on here.
I would feel like I was cheating the system to claim as I am so up and down with this as I said ( not saying you don't need to claim ) and I would be worried if Someone saw me on a good day and knew I was claiming they would report me !
I will continue to fight this darn fibro crap and hope I don't get to the stage that I know a lot of people with it have got to where they simple have no choice but to go down the benefit path.I know no one knows what our futures hold unfortunately, but I am lucky that I work P/T for my husbands company and can pick and choose somewhat how much I do.
I'm glad you have finally been diagnosed, its a great feeling when you find a GP who seems to care, I found mine a few months ago, although I feel I Don't utilise her enough :-)
blueeyes64
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Re: Hello everyone :)

Postby Flaw » Mon Oct 08, 2012 12:40 pm

I would love to work! I would love to be one of these people who has a great job, can pay a mortgage, and enjoy a social life! Unfortunately I have never been able to hold down even a part time- despite giving it my best shot. If I couldn't live at home I actually don't know what would happen to me. Who wants to be living off their parents at 28? It's also not fair that I go from relying on them to my boyfriend- he can't fully support me. My dad also has Gillian Barre syndrome so we're living off my poor mums part time wage- benefits won't pay out a penny for my dad despite the fact he's worked 7 days a week for 45 years- can't walk without a stick, can't pick off a pound from the table, cut his own bread etc. Apparently a part time wage is enough for 3 people to live on.

Like you, my symptoms wax and wane- on a good day I might be able to make myself breakfast, take the dog out, have a nap at lunch time and then do a few chores before collpasing on the sofa. On a bad day I can't get out of bed. I don't see what employer would take me on.

I also suffer from depression and panic attacks- when I'm particularly bad I won't leave the 'safety' of the house.

Saying all that a couple of years ago I had a good couple of months where I almost felt like a normal person :-D

The idea for me now I have been diagnosed is to try and get myself to a point where i CAN work part time. That's all I want, to be able to pay my OH some rent and money for bills.
Looking at the benefit system it seems you have to have no legs and be incapable of having a wee by yourself to qualify.

Sorry you're having a flare up, hopefully it'll ease off soon :) Thank you very much for the welcome!

Carly.

I don't really know what I am going to do, but I love the wealth of information on this site.
Flaw
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Posts: 61
Joined: Sat Oct 06, 2012 11:05 am
Location: Hertfordshire

Re: Hello everyone :)

Postby WhackyJaxx » Mon Oct 08, 2012 2:52 pm

Hi I am just new to the site & using it via my phone which is probably making it more difficult to find my way around.

I noticed the rules are that your profile must be completed or you can be deleted from the forum.

can someone tell me how or where I go to complete my profile. I know I should have started a new thread for this but not sure how to do that eithdr. I will master it eventually.

Many thanks, hoping for a reply.

Regards

WhackyJaxx
WhackyJaxx
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Re: Hello everyone :)

Postby shazq » Mon Oct 08, 2012 4:26 pm

:welcome: to the forum flaw :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.
Fibromyalgia Awareness Day May 12TH.
User avatar
shazq
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Location: wrapped up under my duvet at home.

Re: Hello everyone :)

Postby shazq » Mon Oct 08, 2012 4:37 pm

WhackyJaxx wrote:Hi I am just new to the site & using it via my phone which is probably making it more difficult to find my way around.

I noticed the rules are that your profile must be completed or you can be deleted from the forum.

can someone tell me how or where I go to complete my profile. I know I should have started a new thread for this but not sure how to do that eithdr. I will master it eventually.

Many thanks, hoping for a reply.

Regards

WhackyJaxx


Hi
To add your profile click on user control panel (you will find this under Board index on the upper left side)
you will see columns saying different things, one will say profile, click on that from there you will also be able to add an avatar if you want to. :goodluck1:

To start your own topic

find out what thread your topic is best suited in go to that then you will see a box to your left with red writing saying new topic (its in red writing) just click on that, once you have written your post just submit it. :goodluck1:
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.
Fibromyalgia Awareness Day May 12TH.
User avatar
shazq
UKFM Veteran
 
Posts: 11449
Joined: Wed Feb 11, 2009 8:16 pm
Location: wrapped up under my duvet at home.


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