[yellowted]

how long do you think is reasonable to be dxd with a dissociative disorder before it being classed as a long term, substantial disability??
is 19 months too long or am i just impatient?

[(JD)]

You'll have to check your UK rules... in the USA it is generally 6 months from being dx'd to receiving benefits ...though it takes longer to get through the system, it is retroactive.

[Perna]

Have you worked with MIND or any of the other non-profit organizations?

http://www.mind.org.uk/

[yellowted]

yes i have on a voluntary basis, i have a dx of dissociative motor disorder for 20 months but this dx apparently usually improves in a few months so is not classed as long term substantial though if it lasts more than a year it is likely to be with you for many years to come. but after 20 months it is still being classed as not long term substantial which means adult services will not take me on or apply for a grant to adapt my home (this condition has left me unable to walk, with poor core stability, poor h/e co-ordination, i tire very quickly, it takes over 30 minutes for me to pull myself upstairs to the toilet, bath or bed! I have had to knock out a door frame myself to allow my new wheelchair to pass to the kitchen, I had to build my own ramp last year as i was given a wheel chair but no means of getting it out of the house(i have since been given half a ramp..yes you did read correctly i did say half a ramp!!!) all i want is to be able to move easily and safely around my home so i have energy left to help others and have a life myself. I strongly believe that long term substantial need should be identified on a person by person level not solely by a dx as 100 people with the same dx all may have a different severity/set of symptoms and will all deal with their symptoms in a way personal to them! it just seems so unfair that a friend who can walk with a different dx had had her bathroom adapted to a wet room yet i can't even get up to my loo in less than half an hour or get into my bathroom in my wheelchair!

[Perna]

Sounds like you are getting some things done yourself though, that's good; I find that the most reliable way when I want something done. Do you have friends who could help you with some of the "construction" (i.e., making a matching other half of a ramp)? I think all the work you are having to do yourself is helping you with the energy; if things were "easier" I don't think you would have more energy, it would just sap easier; like any other muscle, you have to use whatever or it gets less.

[yellowted]

yes i am but one little task like knocking out the door frame took three days spread over two weeks as i get soo exhausted, there really is nothing left in me for these sort of tasks after i do the essential tasks of daily living(exhisting). i have 'friends' who could help but choose to run the opposite direction whenever i ask for help! but no one willing to help.

i understand what you say about use it or loose it, i kind of accept the energy i have is all i will have whatever happens, i just want to be able to utilise it in a way to allow me to live rather than just exhist! the problem is that there are so many things i want to do but have not the energy left to do them which if my home environment was easier i would then have the energy left to chip away at the things i want to do. for example my physio stopped treating me because i was too exhausted by getting dressed and downstairs for her visit at 12am that i was unable to do more than a bit of light physio and over a year that decreased from 45 minutes to 15 and not through lack of trying or determination, i physically was drained!, if i did not have to roll off the bed, bum shuffle to the bathroom, haul myself up onto the loo, slide along the bath to reach my bath lift, only to do the same in reverse after my bath and bump downstairs all the time trying not to keel over like a baby i would have energy left to do targeted physio again or even get back to helping out at a group i helped set up to give m/h and others socially isolated a chance to socialise and have a decent cooked meal! heaven forbid i might even make it to the pub once in a while!!!! afterall life is for living not just exhisting. i do not want to merely exhist, i may as well end it now if that is my prognosis!!! i want to live, have a life, socialise, help others, and get back to working so i can support myself once again!!!
am i wrong to want this for myself????

[Perna]

Sounds tough, yellowted. I hate having to wait while working on getting better but sometimes it takes a lot of time. Have you streamlined your "existing" as much as you can? Sounds like you take baths too often/the wrong day to me

I'm glad you did get the door wider for the wheelchair, even if it did take you three days. Maybe you can do a social group that also helps each other a bit when they're together? I remember watching a neat show about a poor neighborhood, everyone on assistance, and they got together to help each other do little chores around their houses; they'd have meetings and each person would say the one thing they wish were different/better for themselves and the others would concentrate on that person's problem and who/how to solve it. Acquaintances might have friends that would help you since yours ran in the opposite direction. I'd think of an easy party idea for you and go to the pub and see who you could gather to come for a pint at your house on Saturday or something. Maybe print up your own "free drink" tickets at the local pub for afterwards and have hand-selected people come over and do a selected task that would help you and then adjourn to the pub?

[yellowted]

I have to bathe everyday at least once! In the summer it can be three times because i have a dx of global hyperhydrosis, i sweat from places i never dreamed had sweat glands!!! (and being incontinent makes it even more necessary to bathe regularly) after all i am too young to have that characteristic stale sweat/ pee smell that you get in old folks homes! i still have my dignity, no one or nothing can take that away from me! if i do not bathe for one day i get deep sores from the sweat which take weeks to heal!

i wish there was such a social group here but there are none, loads who want your help but none willing to help you!!! you make it sound so easy but there really is no one here to help me at all, i have tried everything possible everyway possible and then tried again!!!! still no luck, the problem is i am too self reliant, too practicle and to giving, yep too giving, people see me giving my all to whoever needs my help/support and they think i am fine and able to cope when infact a teapot can only give so much tea before having to be given a refil!!

nope the only person here to help me is me, if i can't do it it doesn't get done! that's the reality of having no family or friends who really care.. you end up like i was, housebound with one person getting shopping for me once every 6 or so weeks, seing no one at all in between unless the postman needed a signiture!! yes that is what i endured for 18 months before i cracked and tried to end my life!. hey ho, i just wish adult services would do their job and adapt my home then i would not need any help !!!!