Fibro choices

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Fibro choices

Postby leewhyte » Wed May 15, 2013 6:04 pm

Hey everyone,

This is my first post but I've been following since I was diagnosed in February.

I don't know how to put this and my apologies if this comes off a bit incoherent and please bear with me.

I'm 26 and My health started to decline in Feb 2012 to the point where I went to my go with stiffness and pain in most of my joints. After a year and a bit of gp and specialist appointments I was diagnosed with fibro although looking back I suspect I had it since an early age. My symptoms have meant I've been unable to work since it started and i have to use a crutch to help me walk to and from the car and doctor appontments. This has mean that I'm currently on ESA.

I've been seen by ATOS HCP twice each time I scored zero. The first decision got overturned without going to appeal. The second is ingoing now. Late September/ early October I was awarded DLA higher mobility and medium care after they wrote to my gp. This has since came up for review and using the decision of the ATOS HCP in march 2011 they declined me. I am awaiting the reconsideration of this decision after pointing out this flaw and advising them of the letter they hold from my gp.

I also get a horrible fog which frustrates me when it impacts on my speech and memory.

All of this has caused me to become depressed and withdrawn when I use to be so outgoing.

Thank you for hearing with me in this. Here's where I need your help.

1) How can I get the DWP/DLA to take me case seriously and stop causing me so much stress when I believe all they are looking at is my age and the dreadful ATOS HCPs?

2) My ability to walk has become very limited as most of you will know and I rarely get to go out and walk as I use to. This led me to hiring a scooter for the day. It felt like I had been given a new lease of life. However I felt every pair of eyes was looking and judging me when I was driving this. I'm sceptical of purchasing one due to ESA and DLA being so unstable and the fact that I'm 26 I feel like people judge me as lazy etc

I would love to know if anyone else out there around my age with this condition and how they cope. If you have any questions I will answer them all honestly and the best I can.
leewhyte
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Re: Fibro choices

Postby djclall » Wed May 15, 2013 8:47 pm

Hi leewhite,

I really do feel for you. It seems the same story for most of us fibro sufferers. We have to fight to get these benefits ie; ESA and DLA , where as some people fake their illnesses and manage to get high rate DLA on both parts. This, i speak of personally. I have a friend who was bed bound, stuck at home and using her partner to do everything for her. She managed somehow to get high DLA for 2 consecutive years. Until somebody reported her. And she has not long admitted that she made it all up. Ggrrr!!! makes me so angry!!.

I am lucky enough to have been awarded DLA, like you, i too am on hrm and mrc. Also i have the dreaded fibro fog too. Sometimes it takes me ages to say what i need to say and it even comes out wrong. And you are on the ball, it is very frustrating and often embarrassing if you are talking to someone that does not know you and your condition.

Unfortunately i am not in the position to help you with your 1st question apart from do you have an OT or social worker?. If you do then ask them to write a report for you to hand in to DWP/DLA. If you don't have either ask your GP to refer you. That is what my GP done. And my OT has authorised an awful lot of work in my housing association house ie; grab rails, hand rails, electric bath seat, steps both front and back outside my home and numerous other things. But all have been a godsend and now i am wondering how i ever managed without them!. My OT, social worker, GP and consultant are currently fighting with H/A to supply and fit a stair lift. They have already refused to finance it but they have given permission to have one fitted. So i am not holding my breath on that one.

Your second question i also fully understand. I, myself, like you hired a scooter one day and also had to put up with the ' how lazy is she ' and 'she is too young to be using one ' looks. But i carried on hiring from my local shopmobility shop. I did feel a bit self conscious and i still do now. It was one day that i was in there when my friend noticed that a couple were for sale at £150 each!! So i treated myself to one. Is there anywhere near you that may have this facility?. Or look in papers or online for scooter bargains?. I am 38 but i still do not feel comfortable going out by myself yet. Even though i have had the scooter about a year now. Not only do we have to put up with the stares and having to explain that we DO need this to get around, we always feel that we have to justify ourselves. Well i do anyway. I was sorting out some bags of shopping recently on the base of my scooter when an eldeely couple asked me if i needed any help. At first i didn't know what they was talking about so replied "no thankyou". It wasn't until after they waalked away that i realised they was asking me because i was on my scooter. I honestly forgot all about it. :-o

All i can say to you is good luck and i really hope that you get the outcome that you need and hopefully hlps you out of your depression a little.
Take care and gentle hugs to you. xx :needhug: :flowers:
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Re: Fibro choices

Postby denys » Wed May 15, 2013 8:51 pm

Hi and :welcome: to the forum :cow-wave: :cow-wave: :cow-wave: :cow-wave: if you have a look in the benefits and work section of the site you will find most people have come up against ATOS, DWP etc. but lots of them have managed to get decisions reversed so hopefully you will find some answers there.

As for using a scooter I do and you have to do what you can to get around so I wouldnt think twice about using one now but I do agree it was strange at first.

There are quite a few younger members on here and so hopefully some of them will be around soon to give you some advice
Denys

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Re: Fibro choices

Postby leewhyte » Wed May 15, 2013 10:20 pm

Hi guys,

Thanks for the responses on here and Facebook.

Djclall I'm not even sure what a social worker does. I bought my house about 6 years ago when I was healthy lol the reason why I'm saying this is because my front door has two steps outside and another inside and there's no access to the back without going through the house so even if I had a scooter I couldn't safely store it.

Denys, I was just stating on Facebook that a friend of my wife's works for atos and says they judge you within minutes and by how much you say your in pain. I'm sure this is what you are meant to do.

Part of my hesitation is that I still live in the same town I went to school in. I'm not that close to the people I went to school with but I'm still in contact with them enough to not want to be in the scooter if I run into them.
leewhyte
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Re: Fibro choices

Postby shazq » Thu May 16, 2013 5:18 pm

:welcome: to the forum Lee :cow-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.
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Re: Fibro choices

Postby djclall » Fri May 17, 2013 4:11 pm

hi leewhite


When you next see your GP just ask him if there is any organisation ie: social worker, occupational therapist or/and pain management course that he/she can refer you too. It doesn't matter if you own your own house or rent from local authorities. They can still help you. I hope that you get everything you are entitled to. There is so many people out there that don't know what they are entitled too so don't claim help. Another option is CAB. They seem to have more resources that they can lay their hands on than GP's.

I wish you well for the future,
Take care. xx
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