Am I disabled & can I get any help?

[DoubleLifeIsALifeHalved]

After a very long drawn out process I have been diagnosed with erhlers danlos, my sister probably died of type 4, & I prob have type 3 but they are checking for type 4 in case...

My question is, am I disabled? I FEEL disabled, but it seems such a wide diagnosis I don't know where I stand?

I am in constant pain, back, pelvis, hips, nerve pain down legs, ankle & foot screwed completely can hardly walk, crutches would help but wrists & hands in pain & weak too, collar bone subluxes as upper back pulls it out as it's taking all the strain, also toes, thumb, jaw sublet/dislocate. Pelvis has arthritis, sacroiliac seems to be a key site of pain but nothing shows up on MRI. Have a scholiosis as well. I can't get muscles working as other ones keep galvanising & then causing issues of their own, like pushing bones out of position. I can't wipe my bum properly for example, (haven't told anyone this), & I have to pee at least 3 times a night & it's so painful getting up from the loo I pee standing into a jug (first time saying this too).

The consultant said my body is slowly deteriorating, & if I don't stop pushing my body so hard, I will push it past the point of return... Doesn't help that i am a single mum to a baby who never sleeps, having to work full time to stay afloat & pay loans, with no family support at all. I have NO IDEA how to let up on my body & get myself out of this negative spiral, and I need all the help I can get...

The good news is I just got diagnosed with parahyperthyroidism which is when body stops processing calcium & thyroid leeches it from bones causing bones to weaken & crumble, muscle pain, problems building new bone & muscle & stress on the kidneys. Good news as is treatable (finally onebloody thing is). Will take 6 mths to see an improvement, but may help me a bit.

I ask this because I am having horrible problems at work & I feel like they are trying to get rid of me, I am feeling pressured into cancelling appointments in order to be in work & my health is deteriorating. I understand that they would find this more difficult to do if I can be classed as disabled...

Granted I do have alot of appointments (weekly I have counselling, acupuncture for pain,Physio & physio led pilates, so have been leaving work at 3 on tues & taking work home, & wed morning working whilst doing physio etc, all work made up by working til 2&3 am...

, but now consultant says these physio appointments aren't even enough, not to mention all the other appointments like pain consultants, geneticists, different physios, podiatry, blood tests...& haven't even thought about when to get my ankle seen to as no ones even looked at it yet...

So any advice or thoughts on whether I would bd classed as disabled & would that open up any help at all... Feel like am hanging on by a slowly unravelling thread here...

Bump?

Anyone?

Hi DoubleLife - I have no experience of your illness however I just wonder if you can apply for Disability Living Allowance which would give you a little extra cash per week? Your Consultant will know and will also have to be named on the DLA form as the consultant would have to provide an honest account of where you are now health / disability wise, and also whether he / she sees there being any improvement any time soon.

Yes, the DLA form is lengthy so perhaps there's a charity who could advise or help you? Or perhaps tackle one or two pages a day - remember that you must be honest on the form and give your example of the 'worst day' - so give an honest account and impression of what a 'bad day' is like.

DLA is not based on income so even though you were, you should still apply.

Good luck.

PS. DLA is changing I believe but will take a while to come in - the sooner you apply, the earlier you'll be able to receive financial help in the form of DLA.

Yes EDS can be classed as a disability. Do your employers have an Occupational Health Department, if you are not sure then HR should know? If not I do know that some GP's surgerys are starting to offer Occ health services. Hope that helps.:)

Personally can't see how you wouldn't be classified as disabled and qualifiy for DLA. Our local carers association often help with filling in the forms as do social services I think. Citizens advice may be able to help too.

Yes you can get some financial help (and maybe practical help too by the sound of things).

My dd is only 8 but has Marfan Syndrome, as does my dh. As you may know, this is similar to EDS. As we have experienced, your health and abilities can vary quite a lot with this kind of condition. Whether you are able to continue to work or not, you can apply for DLA as it isn't means tested. I think Homestart might be able to help you too, as you have a baby - ask your Health Visitor if you have one.

Obviously, work isn't relevant to dd yet but dh works full time. He has had to have 3 major operations in 10 years, so has had to keep his employers informed about his condition - prior to having his eyes sorted out he was partially sighted and had to have the biggest PC monitor that I'd ever seen, and a more comfortable chair because of his spinal problems. Some employers are more helpful than others, but you might find that they can get someone to assess you at work to see what needs to be done to help you.