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Jetmoo
last online: 11/13, 0:06
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I really hate how my mam waits to tell me stressful information when there's no one here to support me emotionally or to help fix the problem.

Great now ill be worrying all weekend. Being incapable of fixing anything all weekend. Thanks mam..

I do tell her to tell me when I actually have support there with me stressful stuff. But she doesn't do this.

I asked her NOT to answer the phone to the district nurses again. But dad told her she should answer. Against my wishes. There are good reasons for my choices.

My parents don't listen to what I believe is best for me. Sometimes makes me wonder if I should take L.P.A away from them. They distress me so much sometimes.

I really don't need additional pressure right now. I only just started to clear my head a bit.

District nurses also not listening. After they treated me like rubbish i asked for them not to contact us again until i was ready, especially as they shared lies about about me last time.
However she ignored me and called my mam and asked about my weight and said she understands that my mam was supposed to call my weight into the surgery. This is false. It's not the only untrue info that's been shared.

And mam doesn't document. I think I'm gonna have to take consent away from them to talk to surgery. They don't follow my wishes.

My mam gives me way too much negative info all at once and expects me to deal with it.

And if we did things the way I asked then I would be in a better place
But even my own parents don't listen to me.

By her answering the phone she has given them more opportunities to document lies and my mum won't write it all down cos she thinks she will remember everything. Her memory is dreadful.

Those nurses should be writing letters to ME. They're supposed to go to my L.P.A when I DO NOT have capacity to make decisions. I am SICK of people excluding me!!!!!!

So now the Dr will be writing it and then if I get too low he will be in touch with the psychiatrist. My mam is not a wise one. I'd much rather tell Dr Myhill.

I think I seriously need to get this Dr Myhill stuff ready now and get her support.

However whether they listen will be another matter.

Dr myhill wrote to provide authorisation for the district nurses to come and do my injections and the nurses say that NICE doesn't say I need them and they won't do them.

As soon as I begin to get my head better focused on what steps I need to take to progress, I end up bombarded with more trouble so we are back to square one.

I struggle to get help from dr myhill because I struggle to communicate with her. There are so many barriers in the way for me to cross.
And I'm gonna have to cross all those barriers about 4 times before I get the help I need.

Let's hope I can jump all the barriers without ending up in MORE TROUBLE.

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Since writing this post Jetmoo may have helped people, but has not within the last four (4) days.
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asked, listen, mam, nurses, barriers
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Helpbot
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It sounds to me like your parents are really trying to be helpful by taking care of these kinds of details for you. I understand they're not doing it the way you want them to, or the way you think they should, but I think they are trying -and that's more than a lot of people can say about their parents!

Maybe you need to call a family meeting and ask them why they aren't doing things according to your wishes? Maybe, if it's because they don't remember what you've said you need to write it down for them? Maybe you need to call the Doctors and make appointments to discuss all this in person with them -maybe with your parents present, too?

Bottom line: do try to work it out peacefully. It seems like your parents are in your corner, and you need all the help and support they can offer, even if it's not ideal.

1581744157174 1581744149313 miss bot
last online: 03/19, 3:49
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Hey Jetmoo. First, I want to thank you for using us here on HELP-QA. This was the main reason this site was created in the first place; to help those that had no place else to go. So please feel free to post here as often as necessary. We may not be the fastest to respond but hey, you get what you pay for. LOL
Another truth, all of us would like to be standing right next to you to give hugs, smile, maybe shed a tear with you. We really would. But we can't. So please accept our hugs and love as Best as we can give it, via WiFi.
Second and this is important. Mental health issues are tough to deal with. Mainly because not a whole lot is known and even fewer doctors around to help people with it. We throw a drug or two at it to see what sticks and what doesn't. One of the best center's in the world is the PNP Center in Lewiston,Texas. They are the best because they take the time to look at what makes you you! I think it would give you some peace of mind too knowing exactly who you are. Please don't say it's impossible. Everything is possible. YOU are possible so so is this.
Third. Read your Bible. Start wherever. He is the only one that is with you 24/7. Lean on Him each and every day. His promise is to take care of all of us. That includes you too.
Love, Southern_comfort

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(2 days after post)
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Thank u both. I'm too tired to reply right now

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(2 days after post)
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Thing is that communicating is extremely difficult and I don't have right support to do it.

And so many problems with healthcare people that I don't feel able to go to them.

Trying y9 get help from a private Dr but whether they will listen is another matter.

The district nurses won't listen.

The medics treated me like shot as well as hospital staff.

And social services.

And the manager up the surgery.

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(2 days after post)
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I mean the private Dr listens but others may not listen to her

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The best way to deal with my mental health would be to have the care I need you tske care of me. I'm so severely neglected and in don't have care I need to follow treatment to get better.

But cos of my illness I don't respond well to antidepressants. I'm ok with this one.

But I'd feel better if I has hope of my future changing.

My hair is matted. I haven't jad a bedbath since April last year. I have no quality of life. I been in bed since January last year.

I don't have the energy to enjoy life. Not through depression but from M.E. but having no life makes me depressed.

Being abuses and neglected by various people and little hope of a better future

1581744157174 1581744149313 miss bot
last online: 03/19, 3:49
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What makes the communicating difficult? And what can be done to improve it?

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soco wrote:
What makes the communicating difficult? And what can be done to improve it?

I have M.E and loads of complex struggles.

I have speech and language therapist assessing me. But they're taking way too long.

And I need social care to assist me to communicate.

I can't apply for more social care until S&L have finished assessing me.

My GP won't help speed up the assessment.

So I'm trying to ask private Dr to ask CCG for funding for them.

I'm 6st 7 cos I struggle.

But I fluctuate ALL THE TIME to a degree that people have to see it to believe it. My carers are the only ones who have really witnessed it and seen me struggling to breath and paralysed ect they have seen me cry out and bite things in my mouth to try and cope with discomfort.

I used to feel like my teeth were wobbly cos of biting down so much. So I tried a baby dummy to bite down on lol

Previous to that I used to bite my arm to try armed distract myself from the rest of my body. And I've tried biting rolled up kitchen roll in my mouth. Holding objects in my hands and trying to squeeze them a little.

I lay on the floor for 2 hours a few months ago.

And I've had heart failure symptoms before and my GP doesn't understand. And it frightens him that he doesn't understand so he doesn't really want the responsibility of me.

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(2 days after post)
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I just can't get a better quality of life without support and the government don't want to give it because of money it costs

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I could do with information on human rights act, for the right to choose my own treatment.


There is no treatment for M.E on our health services unless I go private.

I've already had to pay about ยฃ1500 - ยฃ2000 on tests and need to go Lyme tests too.

I'm considering a solicitor but don't know how much that would cost and I'm scars incase I run out of money.

I have my benefit assessments later this year and nd chances are that no one will be able to help me with them. They generally don't belueve in M.E either.

They put people with M.E in psych wards and give psychological treatment. But M.E is a physiological illness.

It's like telling someone with a broken leg to walk on it to make it better and think positively. And if it doesn't heal then you aren't trying hard enough.

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I'll likely stop being able to come here for a while as being online making me very poorly.

Makes my legs feel tensed.. paralysis can crecreep up my body and stay for unknown lengths of time whilst aching all over. Needing to have eyes shut and no sound and no company. Breathing probs, heart probs.. slower breathing.. low BP.. hypoglycaemia... exhausted.

Paralysis is the worst. Head symptoms.. cognition neurological.. involuntary movements.. visual disturbances.. vertigo... so much more.

I get so sick of talking about illness but can't enjoy life because of it.

Undoing my treatment by being here. The bit that gets done anyway.

1581744157174 1581744149313 miss bot
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I can tell you are trying as hard as you can. You just wish others would try as hard as you and they are clearly not.

1581744157174 1581744149313 miss bot
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What do you dream of?

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soco wrote:
I can tell you are trying as hard as you can. You just wish others would try as hard as you and they are clearly not.

Exactly! And they believe they're trying hard but they're not! My parents try but others not good enough.

But cos Dr is private and not health guidelines they're frightened to follow her guidance as it's not NHS.

But according to NHS there is nothing wrong with me! I have never had any test on NHS to show I'm sick.

And when struggling to breath the last Dr said my breathing was nothing physiological to the medics and then everyone abused me after that like I was a joke with a behaviour problem

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soco wrote:
What do you dream of?

Shopping..

being at my parents and being younger and my sister being there and or old budgie who isn't alive anymore.

And it makes me sad cos I can't go back to the years where my dad had better health. And he's getting more sick with emphysema.

1581744157174 1581744149313 miss bot
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Does he smoke?

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With M.E the effects of any activity even mental or sensory activity is delayed so u don't feel the full damage being done until later.

No dad don't smoke. But he likes his BBQs. I wish he would stop

1581744157174 1581744149313 miss bot
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I am sorry for any damage I am causing you now. If you're tired, did you want me to let you go?

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U r so sweet. I better go. U r only doing ur best. Not ur fault. Thank u for being there xx

1581744157174 1581744149313 miss bot
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I care Jetmoo. Simple as that. And I hope and pray someday we can meet. Get some rest. We have plenty of time to talk later. Love you hon.

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Hard thing is is that my cognition can go borderline capacity at times so when I'm down my brain is blank. My imagination is blank. I can't visualise stuff with my eyes shut. And brain fog can't think of anything.

And I forger the methods I used in the past to cope cos all foggy

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Good night. Love you :)

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Mam wrote her account of what happened so that's good.

I think someone here was right about trying to rely on mam a bit more. Not too much. But a little bit more.

Jetmoo edited this post .

I really hatedont like how my mam waits to tell me stressful information when there's no one here to support me emotionally or to help fix the problem.ยฌ ยฌ Great now ill be worrying all weekend. Being incapable of fixing anything all weekend. Thanks mam..ยฌ ยฌ I do tell her to tell me when I actually have support there with me stressful stuff. But she doesn't do this.ยฌ ยฌ I asked her NOT to answer the phone to the district nurses again. But dad told her she should answer. Against my wishes. There are good reasons for my choices. ยฌ ยฌ My parents don't listen to what I believe is best for me. Sometimes makes me wonder if I should take L.P.A away from them. They distress me so much sometimes.ยฌ ยฌ I really don't need additional pressure right now. I only just started to clear my head a bit.ยฌ ยฌ District nurses also not listening. After they treated me like shit i asked for them not to contact us again until i was ready, especially as they shared lies about about me last time.ยฌ However she ignored me and called my mam and asked about my weight and said she understands that my mam was supposed to call my weight into the surgery. This is false. It's not the only untrue info that's been shared.ยฌ ยฌ And mam doesn't document. I think I'm gonna have to take consent away from them to talk to surgery. They don't follow my wishes.ยฌ ยฌ My mam gives me way too much negative info all at once and expects me to deal with it.ยฌ ยฌ And if we did things the way I asked then I would be in a better placeยฌ But even my own parents don't listen to me.ยฌ ยฌ By her answering the phone she has given them more opportunities to document lies and my mum won't write it all down cos she thinks she will remember everything. Her memory is dreadful.ยฌ ยฌ Those nurses should be writing letters to ME. They're supposed to go to my L.P.A when I DO NOT have capacity to make decisions. I am SICK of people excluding me!!!!!! ยฌ ยฌ So now the Dr will be writing it and then if I get too low he will be in touch with the psychiatrist. My mam is not a wise one. I'd much rather tell Dr Myhill.ยฌ ยฌ I think I seriously need to get this Dr Myhill stuff ready now and get her support.ยฌ ยฌ However whether they listen will be another matter.ยฌ ยฌ Dr myhill wrote to provide authorisation for the district nurses to come and do my injections and the nurses say that NICE doesn't say I need them and they won't do them.ยฌ ยฌ As soon as I begin to get my head better focused on what steps I need to take to progress, I end up bombarded with more trouble so we are back to square one.ยฌ ยฌ I struggle to get help from.dr myhill because I struggle to communicate with her. There are so many barriers in the way for me to cross. ยฌ And I'm gonna have to cross all those barriers about 4 times before I get the help I need.ยฌ ยฌ Let's hope I can jump all the barriers without ending up in MORE TROUBLE.

Jetmoo edited this post .

I really donthate like how my mam waits to tell me stressful information when there's no one here to support me emotionally or to help fix the problem.ยฌ ยฌ Great now ill be worrying all weekend. Being incapable of fixing anything all weekend. Thanks mam..ยฌ ยฌ I do tell her to tell me when I actually have support there with me stressful stuff. But she doesn't do this.ยฌ ยฌ I asked her NOT to answer the phone to the district nurses again. But dad told her she should answer. Against my wishes. There are good reasons for my choices. ยฌ ยฌ My parents don't listen to what I believe is best for me. Sometimes makes me wonder if I should take L.P.A away from them. They distress me so much sometimes.ยฌ ยฌ I really don't need additional pressure right now. I only just started to clear my head a bit.ยฌ ยฌ District nurses also not listening. After they treated me like shitrubbish i asked for them not to contact us again until i was ready, especially as they shared lies about about me last time.ยฌ However she ignored me and called my mam and asked about my weight and said she understands that my mam was supposed to call my weight into the surgery. This is false. It's not the only untrue info that's been shared.ยฌ ยฌ And mam doesn't document. I think I'm gonna have to take consent away from them to talk to surgery. They don't follow my wishes.ยฌ ยฌ My mam gives me way too much negative info all at once and expects me to deal with it.ยฌ ยฌ And if we did things the way I asked then I would be in a better placeยฌ But even my own parents don't listen to me.ยฌ ยฌ By her answering the phone she has given them more opportunities to document lies and my mum won't write it all down cos she thinks she will remember everything. Her memory is dreadful.ยฌ ยฌ Those nurses should be writing letters to ME. They're supposed to go to my L.P.A when I DO NOT have capacity to make decisions. I am SICK of people excluding me!!!!!! ยฌ ยฌ So now the Dr will be writing it and then if I get too low he will be in touch with the psychiatrist. My mam is not a wise one. I'd much rather tell Dr Myhill.ยฌ ยฌ I think I seriously need to get this Dr Myhill stuff ready now and get her support.ยฌ ยฌ However whether they listen will be another matter.ยฌ ยฌ Dr myhill wrote to provide authorisation for the district nurses to come and do my injections and the nurses say that NICE doesn't say I need them and they won't do them.ยฌ ยฌ As soon as I begin to get my head better focused on what steps I need to take to progress, I end up bombarded with more trouble so we are back to square one.ยฌ ยฌ I struggle to get help from.dr myhill because I struggle to communicate with her. There are so many barriers in the way for me to cross. ยฌ And I'm gonna have to cross all those barriers about 4 times before I get the help I need.ยฌ ยฌ Let's hope I can jump all the barriers without ending up in MORE TROUBLE.

Jetmoo edited this post .

I really hate how my mam waits to tell me stressful information when there's no one here to support me emotionally or to help fix the problem.ยฌ ยฌ Great now ill be worrying all weekend. Being incapable of fixing anything all weekend. Thanks mam..ยฌ ยฌ I do tell her to tell me when I actually have support there with me stressful stuff. But she doesn't do this.ยฌ ยฌ I asked her NOT to answer the phone to the district nurses again. But dad told her she should answer. Against my wishes. There are good reasons for my choices. ยฌ ยฌ My parents don't listen to what I believe is best for me. Sometimes makes me wonder if I should take L.P.A away from them. They distress me so much sometimes.ยฌ ยฌ I really don't need additional pressure right now. I only just started to clear my head a bit.ยฌ ยฌ District nurses also not listening. After they treated me like rubbish i asked for them not to contact us again until i was ready, especially as they shared lies about about me last time.ยฌ However she ignored me and called my mam and asked about my weight and said she understands that my mam was supposed to call my weight into the surgery. This is false. It's not the only untrue info that's been shared.ยฌ ยฌ And mam doesn't document. I think I'm gonna have to take consent away from them to talk to surgery. They don't follow my wishes.ยฌ ยฌ My mam gives me way too much negative info all at once and expects me to deal with it.ยฌ ยฌ And if we did things the way I asked then I would be in a better placeยฌ But even my own parents don't listen to me.ยฌ ยฌ By her answering the phone she has given them more opportunities to document lies and my mum won't write it all down cos she thinks she will remember everything. Her memory is dreadful.ยฌ ยฌ Those nurses should be writing letters to ME. They're supposed to go to my L.P.A when I DO NOT have capacity to make decisions. I am SICK of people excluding me!!!!!! ยฌ ยฌ So now the Dr will be writing it and then if I get too low he will be in touch with the psychiatrist. My mam is not a wise one. I'd much rather tell Dr Myhill.ยฌ ยฌ I think I seriously need to get this Dr Myhill stuff ready now and get her support.ยฌ ยฌ However whether they listen will be another matter.ยฌ ยฌ Dr myhill wrote to provide authorisation for the district nurses to come and do my injections and the nurses say that NICE doesn't say I need them and they won't do them.ยฌ ยฌ As soon as I begin to get my head better focused on what steps I need to take to progress, I end up bombarded with more trouble so we are back to square one.ยฌ ยฌ I struggle to get help from.dr dr myhill because I struggle to communicate with her. There are so many barriers in the way for me to cross. ยฌ And I'm gonna have to cross all those barriers about 4 times before I get the help I need.ยฌ ยฌ Let's hope I can jump all the barriers without ending up in MORE TROUBLE.

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By the way mam wrote down her account of what happened over the phone with the nurse.

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