Hypermobility help

Djonma

I mostly know what I'm saying on the forms, fortunately. It's not a problem with filling those in, it's just the fear that they make us have with their total control over our lives!
I couldn't live without the DLA I get. I get so scared that they'll come and take it away, or say I'm a fraud or whatever.
It's ridiculous living like that... the country is convinced we're all benefit frauds with thousands of pounds in our pockets and free cars.

Thousands of pounds? I wish! I NEED that kind of money because my PC is broken, my fridge/freezer is broken, I need new flooring in the house because when I moved in it flooded out and so they took the carpetting out and there's these horrible broken vinyl tiles now... and I fall over them because they're uneven and broken. I have enough falls when my knees / hips just go out without any extra causes!
It's going to take me years to get all that... and that's basic essentials!

I just hate the fear that we have to live in because the papers have decided we're all fraudsters and living on benefits for an easy life.
My life isn't easy at all. If someone else wants my benefits? They're welcome to them... they can take all my health problems too!

That upsets me so much sometimes, when I see those papers.

I just hope they can see that I need higher care now, I've been on lower for three years and really have needed higher for a while now, even without all these seizures.

serenity79

Thanks for the advice Djonma, I'll try to explain about the injury best I can. My foot is pretty colourful at the minute, if it's still like that by Wednesday it might just speak for itself!

Best of luck with your forms. The seizures sound horrible. A decision maker with any sense should know that you need full DLA. But I know them only too well, so I'm keeping everything crossed for you. Make sure you get plenty of support and take it to appeal should you need to.

I know exactly what you mean about that fear of them controlling everything, I hate it. :mad:

MARKZ123

Well i didnt think my problems are anywhere as bad as everyone elses on here.yes i am in constant pain with my back and feet, but im just so glad that after all this time with me thinking im imagining it, now i know im not mad. everything has happened so quickly. my 1st biomechanics appt in march (routine i thought) then since dr's twice, physio assesement, 2nd biomechanic appt (insisted on appt with prof g), dr's this afternoon.
i must say im impressed with the nhs at the moment....
i suppose once ive got an official diagnosis i will probably try and claim dla..
I think that will be a few months down the line...yet

Djonma

I'm glad things have gone so quickly for you. Once I'd seen the physio for ages and we'd worked out there was no way it was normal, I was definitely hypermobile, I just saw my GP and asked to be referred - I'd already asked about EDS with a previous GP as one of my Mum's friends put us on to it. That GP had lifted my skin a bit and said no, it'd come inches off the body if I had EDS.
Well Prof G said my skin DOES come away from the body like it shouldn't, but I have Hypermobility type not classic anyway, so it wouldn't come massively away.

The GP I was with when I asked for the actual referral, knowing who I needed to see, said yes straight away, he was great. It didn't take long to see the Prof.

Having a diagnosis makes it so much easier for claiming. I only got DLA on my third claim... the first one I made after I had broken my back... but they didn't see the break on the x-ray, so they didn't know. I could barely move, let alone walk! I still got turned down!

They say it's symptoms not diagnosis... because everyone is different, but it's rubbish. Without a proper diagnosis they just say you're making it all up, so it definitely is worth waiting a little bit longer.

Best of luck!

serenity79

Just thought I'd update the guys on this thread, the home medical went well and the doctor was very understanding about my injured foot (she didn't even attempt walking anyway as I took a funny turn just sitting up) and I just heard yesterday that I have been awarded high rate mobility and middle rate care, which is what I was hoping for.

mummyslittleboy

Thats great news serenity.

My son has hypermobility, I was diagnosed EDS 3 in December and my daughter is due to see our local rheumy on wednesday as she is being checked for EDS. I get DLA for my son but only the care as he is only just 3. When I went for my last job centre interview my case worker told me I should claim it for myself only problem is I do everything for myself well with the help of my eldest who is the only normal one in the house as she calls it! But I do it because I have to I think my hip sublex's it feels like its not in the right place almost like its slipped out of place?? and the same happens with some of the bones in my feet and my ribs. But my main problem is the pain I am in they are still trying me on different meds to control it but so far nothing seems to help. If i do to much I end up so tired i need to nap so i now have learnt how to pace myself. But I still can't walk to the local shop 15 min walk there as i end up in chronic pain and i cant do anything for the rest of the day. I do drive and if it wasnt for that and online food shopping I would be totally lost. So you see i really dont know if i should apply or not .

serenity79

If you have care needs or mobility needs then you should apply for it. Is your eldest helping you with your own personal care needs? Not talking doing the washing up or cleaning the house, but actually helping you prepare a main meal, or perhaps helping you wash or dress? However, you can get care component if you NEED the help but no one is actually helping you. Do you feel that you struggle to look after your own personal care, even if you are trying to do it by yourself? If that is the case, then yes, apply for care component.

As for mobility, if your condition causes you pain and fatigue when you try to walk, you may be classed as virtually unable to walk. If you can only walk a short distance before suffering severe discomfort/having to stop, the yes, apply for mobility component.

From reading your post, I would say it's worth giving both a try. I would advise you to have an in-depth conversation with your GP to inform them that you are applying and make sure they understand just how much EDS troubles you, that way if the decision maker writes to them, they will be able to write a more accurate report. If you have reports from any of your specialists, make copies of everything you have and send those in with the initial DLA claim pack. I had to get a bigger envelope for my claim pack as I had stuffed so many letters and reports into it! Perhaps even your case worker could write you a supporting letter. Make sure you get advice from your local CAB or other welfare support group on the best way of filling out your form. Keep copies of everything.

Be prepared to have to fight your case, and don't take it personally if they write back to you with a letter making it sound like you're making it all up (believe me, I've been there) make sure you get support from your local CAB or other welfare support group at this stage and go to a panel appeal if need be - a large portion of denials are overturned at appeal stage.

I hope you decide to give it a go, and best of luck. I have had some horrible experiences with DLA, so I know how nerve-racking it can be, but when it goes right, it's so totally worth it. We're only getting the benefits we deserve, at the end of the day!

mummyslittleboy

Thanks Serenity,

My daughter does have to help me with things like brushing my hair and washing it and some days I have trouble getting dressed so she helps she also helps me get out of the bath, and with meals especially bending down to gt stuff out the oven as my back is locking up a lot. I have got a copy of the report my Rheumy sent to my dr which states I suffer pain have EDS 3 and also scoliosis. I will go and see my DR next week and talk to him and fill out the forms.

sunnyone

have you looked at a young carers club for your kids?

Its a really good thing for kids and that include kids with problems because no matter what within a family you all care for each other and help out with what any family member struggles with, thats family life and a young carers club can give your kids an outlet and outside intrest, there will also be support for them if they have problems that they dont want to bring to there parents.