[yellowted]

I have physical symptoms but a m/h dx
i was given a m/h dx before any physical dx s were ruiled out
i was not depressed but given anti depressants
i was given a wheelchair but no way of getting it out of the house
i was given another but no means of getting into my kitchen in it
i was told my dx was changing to anxiety but it wasn't
i was sent to anxiety management group when i was frustrated
i was told to take my home made ramp away because it was dangerous a year later was told it was safe and given half a ramp!
i was given a bath lift but no means of getting upstairs to use it
i was given a comode but not to use as a comode
was told i could have my house adapted then was signed off with nothing having been adapted,
i was referred for an MRI scan, 12 months later i got it (6 months after it i got the results!)
i was told my m/h team had tried everything now am being told i have not tried everything(treatment wise)
i was ordered not to get a scooter (to allow me to get out and do shopping on my own) because it was detrimental to my m/h recovery yet lived alone and could not get myself out of my home in a wheelchair!
camping taught me not to empty chemical loos down a toilet yet an OT suggested i empty a chemical loo down my kitchen sink!(i refused this one!!)
the list could go on for a very long time but you get the message, it is no wonder i feel so mixed up, with all these conflicting messages. i really hate how i feel, i do not know what to think any more, i do not know if i should be on this site or one for physical dxs, or neither, i do not know if this is all in my head or if it is real anymore i feel like a puppet dangling in a nightmare for the past two years with infinity lying ahead just dangling, not knowing, struggling on my own with no one who really understands or anyone to help me fight for my needs. i hate it, i hate this life and all because i do not fit a criteria because of my dx, because people are making assumptions about things they know nothing about, and are not concerned about me as a person, a human being with rights to live safely in my home and to be treated fairly because there is no fair way to compare with for this stupid unknown dx. i give in, can't keep being ok when everything surounding me is so not right.

[Leed]

Holy Toledo!! Don't you have a caseworker who can figure out this nightmare?? How on EARTH do they expect ANYONE to heal when they are subjected to this kind of insanity?? THEY are insane. This is an excellent example of Bureaucracy gone WILD. No one knows what anyone else is doing. No one talks to anyone else - and they don't compare notes. Total insanity.

If it wasn't so tragic, I'd have to laugh at the list you gave us. I wish there was something I could do to help. Nothing makes me MADDER than people who do NOT do their jobs or who do NOT coordinate when they are supposed to. This is a shining example.

God bless you ~ if you can think of anything we can do, let us know. If you life in the U.S., call your Senator!!! Mine has ALWAYS helped me. Yours will too. Hugs, Lee

I am soooo glad you have the objectivity to realize the failings and context of the people/and situation surrounding your dilemma (this is absolute B.S for u to suffer this).I would be absolutely nutz from this situation. Can you speak with social services...or a disability lawyer...and acquire a case worker who can be an advocate with/for you?What state/country are you in? Lets put our heads together and figure out a way to give you a strong voice to get your needs met.This is sooo typical of the system to function in this manner.Not always but very common,for various reasons.

[yellowted]

thankyou both, i used to laugh about it Lee, but after bumping downstairs like an 18 month old for two years, knocking a door frame out and building a ramp myself, and crying every night through the sheer exhaustion as i pull myself upstairs to bed i have ran out of laughter, this is not funny anymore, its a living nightmare! Unfortunately i am not in the USA, i am in 'not so great' Britain!, i have a care manager who i see for an hour once a month, but all she says is she understands i am frustrated and that i have to be patient and that she doesn't know the answers to my questions!!! I am talking to a lawyer tomorrow, hopefully this will help as talking with my local member of parliment councillor , head of mental health and head of physical health in my borough, and the minister for health in parliment have not achieved anything! mainly because my care team tell each one what they want to hear rather than what is actually happening with my care!
(((((((((((((((((hugs to you both)))))))))))))))))))))))))))))))) x

[Leed]

Hey Yellowted ~ I guess the awful Bureaucracy is alive and well no matter WHERE you go. The right hand doesn't know what the left hand is doing ~ the red tape just keeps getting redder.

How can all those people that you talked to have the GUTS to tell you to "be patient" and "they don't know the answers." If I didn't know the answers, I'd darn well FIND OUT!! What are they getting PAID for?? This is criminal, in my book.

I'm so mad I could SPIT. Ptoie .... there. I wish you were over here, cause I'd write to the Congressmen. Heck, if you want to message me, and let me know a few things, I'll write to your Parliament counselor!!
I'm MAD.

God bless Yellowted, and I'm saying prayers! Hugs, Lee

[nice girl]

Hello there.. I'm sorry to hear what u r going through.. I agree with wolfsong.. try to get in touch with a lawyer or social servicer,, they may be able to help u out of it..
Pray things get better for u..

I'll tell you what Yellowted....you have not laid down and just decided...."Oh well...it is what it is..." You are pushing forward in the face of adversity...and coming through with strength....and I hope you can realize your endurance here....possibly consider being a voice for others in this predicament.You are trudging forward and climbing mountains.I for one admire you!I know you will come out the other side with the reward of having made it through.Please keep us updated...and I like the ideas/plans...of action that you are considering!!I had wished you were in the U.S...as I am familiar with 'the system ' here...For two of my three sons...I had to hire a disability lawyer to fight for their SSD benefits here in the US.It took time but they won.I am unfamiliar with the laws governing your country but am an excellent researcher .If you need help or to chat...I am here.

[yellowted]

I am so sorry that i did not reply to you all, i have been on a real downer the past couple of weeks, i just could not cope with fighting anymore so i stopped the world and got off (well switched off the phone, internet and door bell and hibernated in my own self pity trying to sort out this mess!!!) but i am recharged and fighting stronger than ever with a formal complaint against social services!
thankyou all for your kind words of support xx take care xx

[missbelle]

Your post is funny because its so true........same with my arthritis.....exercise, do this, do that..if you could take that...I take herbs and I'm better!!! Blah, blah blah..You could walk if you tried harder..!!!!!......OMG TROUBLE IS THEY REALLY BELIEVE THIS!
and they give you things that might work in different circumstances but don't work as in your case, where you are...and then they think they have done their job and helped you and instead you are even more troubled......half an answer is not good enough..... I truly understand! Been there and in fact, still there!!!
We have to be our own advocate and some of the things they suggest, as in your post, are hysterical. Let's write a book. We could get it published!!!

Hang in there...we are survivors despite them!!!

[yellowted]

thankyou Missbelle, you are so right that we have to be our own advocates, i am in the process of formally complaining about my care (well lack of it) I would love to write a book about peoples experiences, what do you reckon, a comedy or an embarrassing one????

[Bmee2]

Yellowted, i am outraged with what is happening with you. You might want to consider contacting the media...television, newspaper, etc...with your troubles. When all else fails media attention has worked over here. Perhaps it can help you in the UK. And while you are at it you might contact via a letter the Queen of England or the soon to wed Prince Edward. Why not go all out....the worse that can happen is the letter is put in the trash by the royalty or it never reaches them. And the other media....well they might be able to get news ratings on your story.

May you have the strength to endure this current chaos and get the proper help with your residence.
Saying what i call a prayer for you.

[Bmee2]

Yellowted, i forgot to add that you belong here just as much as anyone else. Although writing may be hard for you physically, i think you are in the appropriate place on the computer.

[Can't Stop Crying]

I admire your strength and perseverance.

[yellowted]

Thankyou for so much your support Bmee2 and can't stop crying, I would love to go media, but I really do not want my family to know anything about me or my condition, i cut them all out of my life years ago as they were detrimental to my health and sanity! I have however put in a formal complaint against both adult services and mental health services, if this does not get the desired outcome i am going to the government ombudsman and a lawyer! i have had enough of being messed around, and do not intend to be any longer!! watch out my claws are out!!!!