Council housing for disabled parents -part2, is this hopeless?

[DoubleLifeIsALifeHalved]

So turns out the dept that was supposed to locate a suitable (adapted) home for me & Ds has never done this, will never do it & she (kindly) laughed in my face when I told her that's what I'd been referred to them for :(

Cut a long story short all this new support worker can do is 'help me fill out the forms' for housing register... Not find me a suitable place / one that can be made suitable according to the spec my council OT sent them, incl a room for ds (so i can make my bedroom easy for me vs childproof for him), & a room for a live in carer.

Huge blow :( was my last hope. Am trapped inside a one bed flat i cant even afford, w steps each side & no space/ permission for any modifications needed, no access to bath/ shower & limited access to toilet. People 'carers' steal from me when they come round as I can't keep track of things & they use the clutteredness & not putting things where I can get to them as cover for themselves... My mattress has gone moldy cos is damp in here & everything cramped so I fall cos can't twist properly. I cosleep with Ds as its the only way I can look after him/ ensure his safety during the night.

Basically was told to hope where there is no hope, & I can't see any future.

Was told I'll be in band b as that's where all disabled people are. I won't be able to view properties or bid on them if it's too much clicking/ reading. They laughed at idea of a 3 bed flat, let alone an accessible one.

I can't live like this... But I need to know honestly... There's no hope of me ever getting housing is there?

III

Keep it to myself I fear youngest has it worst more skin and cardio I think not confirmed of course just from what they said at conference.

god what a burden you are bearing :(

i know its not much, but after i found out about about my sister a lot of things fell into place - virtually everything in fact, and i did a lot of research, and medic friends did too, and went through the genetic counselling thing...

... and one thing i did find (which broke my heart, but is a good thing for you) is that my darling sister would not have had the life she had, or died when and as she died, if there had been a diagnosis and proper medical management. i couldn't face investigating further, as there was no point for me, or her, but one day, when you finally get a bit of stability and breathing space, maybe you can have a little look in that direction.

(am really crying for you now, have a hug and a loudly blown nose in your direction xxx)

Don't cry, you have enough on your plate. A few years ago a Dr listened to dd's heart for about a minute then said she should go to councelling for her anxiety the chest pains were rib related. I think she has PoTS now after the conference, she blacks out getting up etc, I tried to get her a electric rising bed in dreams that is another story. I will try to get her a new bed so it is easier on her getting up from lying down.

So now council are clarifying that if I get put down as needing 3bedrooms I won't be 'allowed to bid for 2 bed places therefore could be waiting YEARS no matter how high priority I am...

So do I cause problem with the direct payment people who are pushing the 3rd bedroom for live in carer so they can lower the amount given me (don't know how they worked that out as they already giving me 30hrs less a week than was reassessed as needing!)... Or do i just hope I get lucky???

Also if I wanted to explain that current living conditions were causing damage & risk to my health, what info/ proof would they need of that? Given I have an unpleasant gp?

Do you have a consultant or do you just see a gp?

I hope someone can help, it is such a gamble for you, I would be inclined to wait for three bedrooms.

If male hormones make EDS better, I dread to think how bad DS2 would be if he was a girl! He couldn't walk till 3.7yo due to subluxes, he couldn't talk till after that due to jaw subluxing, he still has to wear wrist splints when writing to stop his thumbs from subluxing...

And mine seems to be getting worse with every passing week. Going back to GP's soon.

Am interested in the valve issues - DD has issues with her mitral valve and another valve that I can't remember the name if. She was dxd HMS at 12mo, had Physio till age 7. She's 14 now, and HMS/EDSIII still causing massive issues.

I too have been interested in Chiari, as that explains a few of my symptoms (much research, Chiari always pointed to with the neck/headache/migraine issues)

I have a consultant but not a very forthright one - her referral requests have been ignored & over ruled by a very unpleasant gp who has made life pretty damn awful this year. It's really fucking hard to carry on tbh, feel like I've been broken by the cruelty & disgust I seem to create in people.

. New GP at my surgery LISTENED to me! I now have things for blood tests for autoimmune antibodies and rheumatoid factor. And lots of other stuff.

And he said I was a good mum. (He's seen me a lot about DS1 this fortnight, and also quite a bit for DS3's allergies).

But he took me seriously, and said that he has no idea how I've managed so well for the last few years. My old GP (just retired) at the surgery used to poo-poo me.

So feeling a lot better. He at least knew what EDS was, too. And he said that as I had been diagnosed with HMS as a child, the likelihood is that I will be reclassified as EDS.

And that he will do what he can to help.

Feels odd to be LISTENED to!

Given my latest experience? Find a new GP. I have discovered that a different GP can see things in a totally different way.

Yeah it's really knocked the stuffing out of me... I'd found a great gp but she got less great as I turned into a chronic illness / heart sink patient, & then she went on mat leave anyway. I've been in limbo ever since, & had both health care & self esteem slowly eroded until am too scared to move gps in case the same thing happens again - stupid huh.

Can't get proper advice on the housing thing as official people shuffle feet & hum & ha, assume they cant say the reality of the situation... It's rubbish I wish they would just SAY!

So sorry this is still going on. BBC radio London tomorrow at 8.45am has someone speaking about EDS.

Fantastic news about the new GP.

Feel shitty. Still ill. So is DS1. I ache. And my chuffing neck keeps subluxing. Usually only once a day, today has been 20+ times. It friffing HURTS now.

Just want to feel healthy. Is that so much to ask?

I almost head butted some bloke at the supermarket today. He looked at my glum face, and told me "cheer up, at least you have your health". If I had had more energy and hadn't been in so much pain, I might have ripped his head off and shit down his neck. Instead I settled for half growling, half coughing at him.

bless you. Exhaustion is killing me right now, frustrating.

Oh no couthy, you must have been furious!

New carer has left without notice after two weeks, saying its too much work & not enough pay - fair enough (true actually), but she told me late sat evening when she was due in at 8am Sunday, which landed me in total crisis. Thanks :(

So now Ds has to go away again & I am hopeless & heart broken.

Bottom line is I cannot get a carer as the job is impossible, the council are pretending that it's ok they've given me 30 less hours than they originally said I needed (after my condition deteriorated lots as I wasn't getting enough help before that even). They are caught up in their own processes & budget plans, & won't even engage with the fact that as they are failing to support me enough, its driving me & my Ds into a tragedy.

All I do when carers are here is lie in bed & try to galvanize self to do everything that needs doing when they aren't here. I cannot start to manage my condition, I cannot change my awful gp, attend appointments, do daily Physio, or anything that will help me break this downwards spiral, because I have to over extert & hurt myself every single day.

When I ask the council for help, they refuse to even accept the problem. If I tell them a bit about how much I am struggling they threaten me with 'getting childrens services involved'. They are giving me alot of hours already, but because it's taken every last ounce of health to get them (jumping hoops all the way), I just can't do it on less than them meeting all my needs, cos they are really needs, not wants as the social workers boss suggested.

I can't do it anymore. All I am doing is failing slower, dying a slow long drawn out death instead of a quick one. I always have a plan, & push forwards, but this time I have nothing.

I can't see a way out.

Oh no, the carers really do let people down, as you say, not a lot of money for them.

Have you tried the Stanmore rehab?

I hope you see this before Friday.

Someone with EDS on FB posted a journo wants to do an article on EDS and parents in your situation, ie you have EDS and are not coping ss may take your child stuff.

The journo works freelance mostly for Express and DM, DM have done a lot of EDS friendly articles lately. The journo is Sonia Poulton on FB.

Ok what to do? Pm me????

responded.

How did you get on?

i messaged her but got no reply... shame, id like a media contact in case all else fails...