Img 5499 photo full
Jetmoo
last online: 11/13, 0:06
Verified User (4 years, 9 months)
Long Term User
Shoutout0

Wil someone read letter for my GP I wrote and tell me if its ok or not and tell me how to use less words?

Dear Dr ,

As you know I have cognition difficulties and struggle to have multiple people in my care. There is no discrimination. I had requested to have one nurse also and having new carers is a very difficult gradual process. I have had about 7 different social workers already which is very hard for me. I have difficulties processing so many different people and social situations. It affects my understanding of what is going on and makes it harder for me to make informed decisions.

I have test results that shows I am unwell, although I do not believe I am fully diagnosed. I would like eventually, when misunderstandings been resolved, to have the serology testing that you offered me. It was misunderstood that I declined all serology testing. I only declined testing for Lyme disease as I’ll be paying for this myself. Serraspot and Elispot testing for Lyme are known to give more accurate results. Please can I, in time, have serology testing?

You believe M.E is a physical illness, but I do not think you understand or believe the full extend of how badly it affects me. You noted that my ECG was likely elevated due to stress. M.E is known to affect the heart and breathing. You also said it was inappropriate for me to ask you for CCG funding to allow longer appointments to communicate with SALT. I disagree that it was inappropriate.

M.E affects how I process information and under time pressure I can process incorrectly and then respond inappropriately which is partially why I need carers to support me with communication. M.E affects how I process information and under pressure I cannot process my understanding correctly given in a short amount of time, only to respond inappropriately which is partially why I need the people that assist and support me with cooperative communication. This is partially why I do not respond well when I am under pressure to make decisions quickly, such as the words in the way I speak. This happens most during 2 way speech interactions. M.E can make me come across as offensive and has resulted in relationship breakdowns.

We believe I have aspergers. Please can we arrange a meeting with yourself, Debbie (who is also a disabilities nurse), my mam and sister to discuss this? I think that the cognition struggles amplify aspergers and make it even harder to express myself appropriately. I can become very overwhelmed and distressed from sensory overload and time pressure of processing language and this all overloads me. Even the amount of visual stimuli in my room has at times caused meltdowns.

You have said you do not understand my test results and could not offer the support I needed. Please seek guidance from Dr Myhill to learn about the test results and their implications. Without understanding my test results, I am being left in a dangerous position. Without NHS being able to understand my test results I feel unsafe and that you do not know how best to support me and nor does anyone else in the NHS.

Yours sincerely,
Jessica

This open post was written |
Views: 32, Subscribers: 4 |
Leave a reply | Report Post

⇩ Zoom to bottom
Reciprocity (0)
Reciprocity
Since writing this post Jetmoo may have helped people, but has not within the last four (4) days.
Post Tags (5)
words, read, letter, wrote, wil
Replies (42)
Jetmoo edited this post .

Wil someone read letter for my GP I wrote and tell me if its ok or not and tell me how to use less words?

Img 5499 photo full
(1 minute after post)
Quote this reply Report this reply to moderators
Jetmoo invited 1 user .
Img 5499 photo full
(2 minutes after post)
Quote this reply Report this reply to moderators
Jetmoo invited 2 users .
Electric
BA1
last online: 01/25, 20:20
Verified User (6 years, 6 months)
Long Term User
Shoutout0
#
(3 minutes after post)
Quote this reply Report this reply to moderators

Sure. I'll give it a look-over. When ever you're ready.

Img 5499 photo full
(5 minutes after post)
Quote this reply Report this reply to moderators

Thank you ❤️

User photo 22810 561248
(5 minutes after post)
Quote this reply Report this reply to moderators

English is not my first language, but I wouldn't mind giving my input.

Jetmoo edited this post .

Wil someone read letter for my GP I wrote and tell me if its ok or not and tell me how to use less words??¬ ¬ Dear Dr , ¬ ¬ You know I have cognition difficulties and struggle to have multiple people in my care. There is no discrimination with this. I had requested to have one nurse also and having new carers is a very difficult and gradual process. I have had about 7 different social workers already which has been very hard for me.¬ ¬ I have difficulties processing so many different people and social situations. I only approach people who I trust. The experience of having M.E has been highly traumatic. It is very distressing when I have come across people do not believe I am struggling the way I say I do and when people underestimate how M.E affects me. ¬ ¬ Many people I have been in connection with throughout my illness have treated me with stigma of me being mentally ill. This is not limited to professionals. But professionals have told me before that my breathing struggles was nothing physiological when i know for a fact it was not mental health related. I am aware what panic attacks feel like and I recognise when it is not one. I have been denied home visits when I had told Esh winning Drs that I was struggling to even crawl around my house, because of my age and illness.¬ ¬ Paramedics treated me as if I was a prank caller wasting their time when I was genuinely very unwell and frightened that I was going to die. It was written in my notes there was no medical cause identified. I think this has led people to think I am not physiologically unwell. When I was in hospital they did not do blood tests or any in-depth testing to find out what was causing me to be so unwell. I believe this is because of the stigma of my illness as being mental.¬ ¬ I now have test results that show I am unwell physiologically, although I do not believe I am fully diagnosed. I would like eventually, when misunderstandings have been resolved, to have the serology testing that you offered me. It was misunderstood that I declined all serology testing. I only declined testing for Lyme disease as I’ll be paying for this myself. Serraspot and Elispot testing are known to give more accurate results.¬ ¬ You believe M.E is a physical illness, but I do not think you understand or believe the full extend of how badly it affects me. You noted that my ECG was likely elevated due to stress. M.E is known to affect the heart and breathing. You also said it was inappropriate for me to ask you for CCG funding to allow longer appointments to communicate with SALT. I disagree that it was inappropriate. ¬ ¬ I feel as though judgements are being made on me on a personal level. I am a very caring person. I tend to put others before myself which is partly why I relapsed. I am a very affectionate person and I have a lot of love to give. This world needs a lot more love in it. I am not this person I feel you and others are seeing me as. M.E affects how I process information and under time pressure I can process incorrect and then respond inappropriately which is why I need carers to support me. This is partially why I do not respond well when I am put in a position where I feel pressured to make decisions quickly, such as the words I speak or manner of how I do it. My illness can make me come across as offensive and has cost me personal relationships as well.¬ ¬ I sense that you may be considering that I may have borderline personality disorder, along side having M.E. Is this the case? If so, I can assure you that in my teen years I spent many hours searching online trying to find out what was wrong with me. I got bullied a lot at school and I struggled to make friends. I have already come across BPD and I did and still don’t think I have it.¬ ¬ My sister’s child has Autism. Me and her fell out afew years ago. When I relapsed and she soon discovered how absolutely distort I had been. She then realised I was genuinely upset and not meaning to be offensive. She eventually said to me, she thinks I might have aspergers. I was initially offended by this. But after finding out more about it, I feel that it was the missing puzzle piece for all the questions I have had about myself all my life. Everything now makes sense. I think that the cognition struggles amplify aspergers and make it even harder to express myself appropriately. I can become very overwhelmed and distressed from sensory overload and time pressure of processing language and this overloads me. I think I can have meltdowns from it. ¬ ¬ I have had problems forming new relationships and struggled to make many but once formed I have been able to maintain them for years. But when I got M.E my relationships broke down. Before the last relapse I tried to mix with others and make friends and instead had multiple people take advantage of me. It has been dangerous at times. I’m very vulnerable and want my carers to be there to monitor and support me to have relationships safely, professionals included.¬ ¬ I have been put in dangerous positions afew times and I have been mistreated by person’s who did not understand my illness. ¬ ¬ You have said you do not understand my test results and could not offer the support I needed. Please seek guidance from Dr Myhill to learn about the test results and what they mean. Please take time to understand my illness. I do not hold it against NHS for having a lack of understanding. The lack of understanding has stemmed from the PACE trial research that has now been debunked. This was all discussed in the House of Commons. Graded exercise therapy has been said to be inappropriate treatment for those with M.E, but you have mentioned me having GET twice, despite us telling you it is unsafe. Please seek guidance from Dr Myhill to find out why. ¬ ¬ Without the support I require I am left in a dangerous position. Without NHS being able to understand my test results I feel unsafe. I feel unsafe to have other Drs as they are not aware of my needs. I struggle with trusting people because I am a vulnerable adult and Id rather I had you as my GP.¬ ¬ I have always been able to choose which Dr comes on home visits or any appointments. What has prompted this change? Please reconsider it.¬ ¬ In respect of me being seen in a negative light as being demanding, I would like to say that I am being assertive and determined for good reason. When I act out of character it is for good reason. I do not like to cause anyone trouble and in fact my dependency on others makes me feel guilty.

Electric
BA1
last online: 01/25, 20:20
Verified User (6 years, 6 months)
Long Term User
Shoutout0
#
(8 minutes after post)
Quote this reply Report this reply to moderators

Jetmoo, I'll be right back in a short while. This should also give you the time to post your letter.
See you in just a bit.😉

Img 5499 photo full
(9 minutes after post)
Quote this reply Report this reply to moderators

I’ve edited the post to include it

Img 5499 photo full
(10 minutes after post)
Quote this reply Report this reply to moderators

Thank you both

Img 5499 photo full
(21 minutes after post)
Quote this reply Report this reply to moderators

Without NHS being able to understand my test results I feel unsafe.
**I feel even more unsafe to have other Drs as they have always had less understanding of M.E than yourself.** I struggle with trusting people because I am a vulnerable adult and Id rather I had you as my GP.

Do you think that change sounds better?

Jetmoo edited this post .

Wil someone read letter for my GP I wrote and tell me if its ok or not and tell me how to use less words?¬ ¬ Dear Dr , ¬ ¬ , ¬ ¬ I am writing in response to the letter you sent dated _____. ¬ ¬ You know I have cognition difficulties and struggle to have multiple people in my care. There is no discrimination with this. I had requested to have one nurse also and having new carers is a very difficult and gradual process. I have had about 7 different social workers already which has been very hard for me.¬ ¬ I have difficulties processing so many different people and social situations. I only approach people who I trust. The experience of having M.E has been highly traumatic. It is very distressing when I have come across people do not believe I am struggling the way I say I do and when people underestimate how M.E affects me. ¬ ¬ Many people I have been in connection with throughout my illness have treated me with stigma of me being mentally ill. This is not limited to professionals. But professionals have told me before that my breathing struggles was nothing physiological when i know for a fact it was not mental health related. I am aware what panic attacks feel like and I recognise when it is not one. I have been denied home visits when I had told Esh winning Drs that I was struggling to even crawl around my house, because of my age and illness.¬ ¬ Paramedics treated me as if I was a prank caller wasting their time when I was genuinely very unwell and frightened that I was going to die. It was written in my notes there was no medical cause identified. I think this has led people to think I am not physiologically unwell. When I was in hospital they did not do blood tests or any in-depth testing to find out what was causing me to be so unwell. I believe this is because of the stigma of my illness as being mental.¬ ¬ I now have test results that show I am unwell physiologically, although I do not believe I am fully diagnosed. I would like eventually, when misunderstandings have been resolved, to have the serology testing that you offered me. It was misunderstood that I declined all serology testing. I only declined testing for Lyme disease as I’ll be paying for this myself. Serraspot and Elispot testing are known to give more accurate results.¬ ¬ You believe M.E is a physical illness, but I do not think you understand or believe the full extend of how badly it affects me. You noted that my ECG was likely elevated due to stress. M.E is known to affect the heart and breathing. You also said it was inappropriate for me to ask you for CCG funding to allow longer appointments to communicate with SALT. I disagree that it was inappropriate. ¬ ¬ I feel as though judgements are being made on me on a personal level. I am a very caring person. I tend to put others before myself which is partly why I relapsed. I am a very affectionate person and I have a lot of love to give. This world needs a lot more love in it. I am not this person I feel you and others are seeing me as. M.E affects how I process information and under time pressure I can process incorrect and then respond inappropriately which is why I need carers to support me. This is partially why I do not respond well when I am put in a position where I feel pressured to make decisions quickly, such as the words I speak or manner of how I do it. My illness can make me come across as offensive and has cost me personal relationships as well.¬ ¬ I sense that you may be considering that I may have borderline personality disorder, along side having M.E. Is this the case? If so, I can assure you that in my teen years I spent many hours searching online trying to find out what was wrong with me. I got bullied a lot at school and I struggled to make friends. I have already come across BPD and I did and still don’t think I have it.¬ ¬ My sister’s child has Autism. Me and her fell out afew years ago. When I relapsed and she soon discovered how absolutely distort I had been. She then realised I was genuinely upset and not meaning to be offensive. She eventually said to me, she thinks I might have aspergers. I was initially offended by this. But after finding out more about it, I feel that it was the missing puzzle piece for all the questions I have had about myself all my life. Everything now makes sense. I think that the cognition struggles amplify aspergers and make it even harder to express myself appropriately. I can become very overwhelmed and distressed from sensory overload and time pressure of processing language and this overloads me. I think I can have meltdowns from it. ¬ ¬ I have had problems forming new relationships and struggled to make many but once formed I have been able to maintain them for years. But when I got M.E my relationships broke down. Before the last relapse I tried to mix with others and make friends and instead had multiple people take advantage of me. It has been dangerous at times. I’m very vulnerable and want my carers to be there to monitor and support me to have relationships safely, professionals included.¬ ¬ I have been put in dangerous positions afew times and I have been mistreated by person’s who did not understand my illness. ¬ ¬ You have said you do not understand my test results and could not offer the support I needed. Please seek guidance from Dr Myhill to learn about the test results and what they mean. Please take time to understand my illness. I do not hold it against NHS for having a lack of understanding. The lack of understanding has stemmed from the PACE trial research that has now been debunked. This was all discussed in the House of Commons. Graded exercise therapy has been said to be inappropriate treatment for those with M.E, but you have mentioned me having GET twice, despite us telling you it is unsafe. Please seek guidance from Dr Myhill to find out why. ¬ ¬ Without the support I require I am left in a dangerous position. Without NHS being able to understand my test results I feel unsafe. I feel unsafe to have other Drs as they are not aware of my needs. I struggle with trusting people because I am a vulnerable adult and Id rather I had you as my GP.¬ ¬ I have always been able to choose which Dr comes on home visits or any appointments. What has prompted this change? Please reconsider it.¬ ¬ In respect of me being seen in a negative light as being demanding, I would like to say that I am being assertive and determined for good reason. When I act out of character it is for good reason. I do not like to cause anyone trouble and in fact my dependency on others makes me feel guilty.

Jetmoo edited this post .

Wil someone read letter for my GP I wrote and tell me if its ok or not and tell me how to use less words?¬ ¬ Dear Dr , ¬ ¬ I am writing in response to the letter you sent dated _____. ¬ ¬ You know I have cognition difficulties and struggle to have multiple people in my care. There is no discrimination with this. I had requested to have one nurse also and having new carers is a very difficult and gradual process. I have had about 7 different social workers already which has been very hard for me.¬ ¬ I have difficulties processing so many different people and social situations. I only approach people who I trust. The experience of having M.E has been highly traumatic. It is very distressing when I have come across people do not believe I am struggling the way I say I do and when people underestimate how M.E affects me. ¬ ¬ Many people I have been in connection with throughout my illness have treated me with stigma of me being mentally ill. This is not limited to professionals. But professionals have told me before that my breathing struggles was nothing physiological when i know for a fact it was not mental health related. I am aware what panic attacks feel like and I recognise when it is not one. I have been denied home visits when I had told Esh winning Drs that I was struggling to even crawl around my house, because of my age and illness.¬ ¬ Paramedics treated me as if I was a prank caller wasting their time when I was genuinely very unwell and frightened that I was going to die. It was written in my notes there was no medical cause identified. I think this has led people to think I am not physiologically unwell. When I was in hospital they did not do blood tests or any in-depth testing to find out what was causing me to be so unwell. I believe this is because of the stigma of my illness as being mental.¬ ¬ I now have test results that show I am unwell physiologically, although I do not believe I am fully diagnosed. I would like eventually, when misunderstandings have been resolved, to have the serology testing that you offered me. It was misunderstood that I declined all serology testing. I only declined testing for Lyme disease as I’ll be paying for this myself. Serraspot and Elispot testing are known to give more accurate results.¬ ¬ You believe M.E is a physical illness, but I do not think you understand or believe the full extend of how badly it affects me. You noted that my ECG was likely elevated due to stress. M.E is known to affect the heart and breathing. You also said it was inappropriate for me to ask you for CCG funding to allow longer appointments to communicate with SALT. I disagree that it was inappropriate. ¬ ¬ I feel as though judgements are being made on me on a personal level. I am a very caring person. I tend to put others before myself which is partly why I relapsed. I am a very affectionate person and I have a lot of love to give. This world needs a lot more love in it. I am not this person I feel you and others are seeing me as. M.E affects how I process information and under time pressure I can process incorrect and then respond inappropriately which is why I need carers to support me. This is partially why I do not respond well when I am put in a position where I feel pressured to make decisions quickly, such as the words I speak or manner of how I do it. My illness can make me come across as offensive and has cost me personal relationships as well.¬ ¬ I sense that you may be considering that I may have borderline personality disorder, along side having M.E. Is this the case? If so, I can assure you that in my teen years I spent many hours searching online trying to find out what was wrong with me. I got bullied a lot at school and I struggled to make friends. I have already come across BPD and I did and still don’t think I have it.¬ ¬ My sister’s child has Autism. Me and her fell out afew years ago. When I relapsed and she soon discovered how absolutely distort I had been. She then realised I was genuinely upset and not meaning to be offensive. She eventually said to me, she thinks I might have aspergers. I was initially offended by this. But after finding out more about it, I feel that it was the missing puzzle piece for all the questions I have had about myself all my life. Everything now makes sense. I think that the cognition struggles amplify aspergers and make it even harder to express myself appropriately. I can become very overwhelmed and distressed from sensory overload and time pressure of processing language and this overloads me. I think I can have meltdowns from it. ¬ ¬ I have had problems forming new relationships and struggled to make many but once formed I have been able to maintain them for years. But when I got M.E my relationships broke down. Before the last relapse I tried to mix with others and make friends and instead had multiple people take advantage of me. It has been dangerous at times. I’m very vulnerable and want my carers to be there to monitor and support me to have relationships safely, professionals included.¬ ¬ I have been put in dangerous positions afew times and I have been mistreated by person’s who did not understand my illness. ¬ ¬ You have said you do not understand my test results and could not offer the support I needed. Please seek guidance from Dr Myhill to learn about the test results and what they mean. Please take time to understand my illness. I do not hold it against NHS for having a lack of understanding. The lack of understanding has stemmed from the PACE trial research that has now been debunked. This was all discussed in the House of Commons. Graded exercise therapy has been said to be inappropriate treatment for those with M.E, but you have mentioned me having GET twice, despite us telling you it is unsafe. Please seek guidance from Dr Myhill to find out why. ¬ ¬ Without the support I require I am left in a dangerous position. Without NHS being able to understand my test results I feel unsafe. I feel more unsafe to have other Drs as they have always had less understanding of M.E than yourself. I feel unsafe to have other Drs as they are not aware of my needs. I struggle with trusting people because I am a vulnerable adult and Id rather I had you as my GP.¬ ¬ I have always been able to choose which Dr comes on home visits or any appointments. What has prompted this change? Please reconsider it.¬ ¬ In respect of me being seen in a negative light as being demanding, I would like to say that I am being assertive and determined for good reason. When I act out of character it is for good reason. I do not like to cause anyone trouble and in fact my dependency on others makes me feel guilty.

Img 5499 photo full
(1 hour after post)
Quote this reply Report this reply to moderators

Ok I’ve had some support with it. I’ll share 2nd draft...

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

.j

Jetmoo edited this post .

Wil someone read letter for my GP I wrote and tell me if its ok or not and tell me how to use less words?¬ ¬ Dear Dr , ¬ ¬ , ¬ ¬ As you know I am writing in response to the letter you sent dated _____. ¬ ¬ You know I have cognition difficulties and struggle to have multiple people in my care. There is no discrimination with this. I had requested to have one nurse also and having new carers is a very difficult and gradual process. I have had about 7 different social workers already which has been very hard for me.¬ ¬ I have difficulties processing so many different people and social situations. I only approach people who I trust. The experience of having M.E has been highly traumatic. It is very distressinghard when I have come across people do not believe I am struggling the way I say I do and when people underestimate how M.E affects me. ¬ ¬ Many people I have been in connection with throughout my illness have treated me with stigma of me being mentally ill. This is not limited to professionals. But professionals have told me before that my breathing struggles was nothing physiological when i know for a fact it was not mental health related. I am aware what panic attacks feel like and I recognise when it is not one. I have been denied home visits when I had told Esh winning Drs that I was struggling to even crawl around my house, because of my age and illness.¬ ¬ Paramedics treated me as if I was a prank caller wasting their time when I was genuinely very unwell and frightened that I was going to die. It was written in my notes there was no medical cause identified. I think this has led people to think I am not physiologically unwell. When I was in hospital they did not do blood tests or any in-depth testing to find out what was causing me to be so unwell. I believe this is because of the stigma of my illness as being mental.¬ ¬ I now have difficulties processing so many different people and social situations. It affects my understanding of what is going on and makes it harder for me to make informed decisions.¬ ¬ I have test results that showshows I am unwell physiologically, although I do not believe I am fully diagnosed. I would like eventually, when misunderstandings have been resolved, to have the serology testing that you offered me. It was misunderstood that I declined all serology testing. I only declined testing for Lyme disease as I’ll be paying for this myself. Serraspot and Elispot testing are known to give more accurate results.¬ ¬ You believe M.E is a physical illness, but I do not think you understand or believe the full extend of how badly it affects me. You noted that my ECG was likely elevated due to stress. M.E is known to affect the heart and breathing. You also said it was inappropriate for me to ask you for CCG funding to allow longer appointments to communicate with SALT. I disagree that it was inappropriate. ¬ ¬ I feel as though judgements are being made on me on a personal level. I am a very caring person. I tend to put others before myself which is partly why I relapsed. I am a very affectionate person and I have a lot of love to give. This world needs a lot more love in it. I am not this person I feel you and others are seeing me as. M.E affects how I process information and under time pressure I can process incorrect and then respond inappropriately which is why I need carers to support me. This is partially why I do not respond well when I am put in a position where I feel pressured to make decisions quickly, such as the words I speak or manner of how I do it. My illness can make me come across as offensive and has cost me personal relationships as well.¬ ¬ I sense that you may be considering that I may have borderline personality disorder, along side having M.E. Is this the case? If so, I can assure you that in my teen years I spent many hours searching online trying to find out what was wrong with me. I got bullied a lot at school and I struggled to make friends. I have already come across BPD and I did and still don’t think I have it.¬ ¬ My sister’s child has Autism. Me and her fell out afew years ago. When I relapsed and she soon discovered how absolutely distort I had been. She then realised I was genuinely upset and not meaning to be offensive. She eventually said to me, she thinks I might have aspergers. I was initially offended by this. But after finding out more about it, I feel that it was the missing puzzle piece for all the questions I have had about myself all my life. Everything now makes sense. I think that the cognition struggles amplify aspergers and make it even harder to express myself appropriately. I can become very overwhelmed and distressed from sensory overload and time pressure of processing language and this overloads me. I think I can have meltdowns from it. ¬ ¬ I have had problems forming new relationships and struggled to make many but once formed I have been able to maintain them for years. But when I got M.E my relationships broke down. Before the last relapse I tried to mix with others and make friends and instead had multiple people take advantage of me. It has been dangerous at times. I’m very vulnerable and want my carers to be there to monitor and support me to have relationships safely, professionals included.¬ ¬ I have been put in dangerous positions afew times and I have been mistreated by person’s who did not understand my illness. ¬ ¬ You have said you do not understand my test results and could not offer the support I needed. Please seek guidance from Dr Myhill to learn about the test results and what they mean. Please take time to understand my illness. I do not hold it against NHS for having a lack of understanding. The lack of understanding has stemmed from the PACE trial research that has now been debunked. This was all discussed in the House of Commons. Graded exercise therapy has been said to be inappropriate treatment for those with M.E, but you have mentioned me having GET twice, despite us telling you it is unsafe. Please seek guidance from Dr Myhill to find out why. ¬ ¬ Without the support I require I am left in a dangerous position. Without NHS being able to understand my test results I feel unsafe. I feel more unsafe to have other Drs as they have always had less understanding of M.E than yourself. I struggle with trusting people because I am a vulnerable adult and Id rather I had you as my GP.¬ ¬ I have always been able to choose which Dr comes on home visits or any appointments. What has prompted this change? Please reconsider it.¬ ¬ In respect of me being seen in a negative light as being demanding, I would like eventually, when misunderstandings been resolved, to sayhave the serology testing that you offered me. It was misunderstood that I declined all serology testing. I only declined testing for Lyme disease as I’ll be paying for this myself. Serraspot and Elispot testing for Lyme are known to give more accurate results. Please can I, in time, have serology testing?¬ ¬ You believe M.E is a physical illness, but I do not think you understand or believe the full extend of how badly it affects me. You noted that my ECG was likely elevated due to stress. M.E is known to affect the heart and breathing. You also said it was inappropriate for me to ask you for CCG funding to allow longer appointments to communicate with SALT. I disagree that it was inappropriate. ¬ ¬ M.E affects how I process information and under time pressure I can process incorrectly and then respond inappropriately which is partially why I need carers to support me with communication. This is partially why I do not respond well when I am put in a position where I feel pressured to make decisions quickly, such as the words I speak or manner of how I do it. This happens most during 2 way speech interactions. M.E can make me come across as offensive and has resulted in personal relationship breakdowns .¬ ¬ We believe I have aspergers. Please can we arrange a meeting with yourself, Debbie (who is also a disabilities nurse), my mam and sister to discuss this? I think that the cognition struggles amplify aspergers and make it even harder to express myself appropriately. I can become very overwhelmed and distressed from sensory overload and time pressure of processing language and this all overloads me. Even the amount of visual stimuli in my room has at times caused meltdowns. ¬ ¬ You have said you do not understand my test results and could not offer the support I needed. Please seek guidance from Dr Myhill to learn about the test results and their implications. Without understanding my test results, I am being assertiveleft in a dangerous position. Without NHS being able to understand my test results I feel unsafe and determinedthat foryou good reason. When I act out of character it is for good reason. I do not likeknow how best to causesupport anyone trouble and in fact my dependency on others makes me feeland guilty.nor does anyone else in the NHS.¬ ¬ Yours sincerely,¬ Jessica

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators
Jetmoo invited 1 user .
Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

Do u think this sounds ok? Sorry I get anxiety so I like getting reassurance 😅

Yorick
(2 hours after post)
Quote this reply Report this reply to moderators

im reading.. ..ya got the AS you know covered lol .. lemme review

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

AS? Awesome! Thank you ❤️😊

Yorick
(2 hours after post)
Quote this reply Report this reply to moderators

before you had .. you know.. .. then u got the as you know as correct edit.. no.. not AS .. its As

Yorick
(2 hours after post)
Quote this reply Report this reply to moderators

heres my edit..

M.E affects how I process information and under pressure I cannot process my understanding correctly given in a short amount of time, only to respond inappropriately which is partially why I need the people that assist me to support me with cooperative communication.

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

Yorick wrote:
before you had .. you know.. .. then u got the as you know as correct edit.. no.. not AS .. its As

I’m soooo confused!!! 😅

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

Yorick wrote:
heres my edit..

M.E affects how I process information and under pressure I cannot process my understanding correctly given in a short amount of time, only to respond inappropriately which is partially why I need the people that assist me to support me with cooperative communication.

which para was this referring to again?

Yorick
(2 hours after post)
Quote this reply Report this reply to moderators

para 4

Yorick
(2 hours after post)
Quote this reply Report this reply to moderators

u know.. everyone could make all these adjustments/edits but then it wouldn't be your words.. maybe the original is the best.. because they're your words u know.

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

Yorick wrote:

M.E affects how I process information and under pressure I cannot process my understanding correctly given in a short amount of time, only to respond inappropriately which is partially why I need the people that assist me to support me with cooperative communication.

Compared with....

It’s being awkward 🙀 why is copy and paste on this stupid iPad so awkward!!!!!!!!!! Ahhhhh

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

Does lack of sleep cause people anxiety?

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

Para 4

M.E affects how I process information and under time pressure I can process incorrectly and then respond inappropriately which is partially why I need carers to support me with communication. This is partially why I do not respond well when I am put in a position where I feel pressured to make decisions quickly, such as the words I speak or manner of how I do it. This happens most during 2 way speech interactions. M.E can make me come across as offensive and has resulted in personal relationship breakdowns .

Yorick
(2 hours after post)
Quote this reply Report this reply to moderators

copy paste this for paragraph 4


M.E affects how I process information and under pressure I cannot process my understanding correctly given in a short amount of time, only to respond inappropriately which is partially why I need the people that assist and support me with cooperative communication. This is partially why when I do not respond well I am under pressure to make decisions quickly, such as the words in a way I speak. This happens most during 2 way speech interactions. M.E can make me come across as offensive and has resulted in personal relationship breakdowns among my assistants.

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

It actually HAS resulted in me losing two of my own carers before.

But I can’t say I have personal relationships with my assistants. That would make them look unprofessional

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

But I would be scared to say my carers have misunderstood me before as it may make my care provider look bad and I don’t want to lose them if social services think they are bad for me.

Should I be putting in about the two carers?

The disabilities nurse carer helps to keep everything under control cos she understands aspergers

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

Should that be incorporated somehow?

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

This is partially why when I do not respond well I am under pressure to make decisions quickly, such as the words in the way I speak.
- I feel like this sentence doesn’t quite make sense or that the words are in wrong order

Let’s see...
This is partially why I do not respond well when I am under pressure to make decisions quickly, such as the words in the way I speak.

That’s better 😊 the when was in the wrong place

Yorick
(2 hours after post)
Quote this reply Report this reply to moderators

its a formal letter directed to a professional... you're not hurting anyone with under nor overstatements. you're simply asking for better caretakers with more patience.

right?

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

No I love my carers they are the only ones who understand me.

It’s social services and NHS professionals who treat me like ****

It has taken a very long time for carers to understand me. Well over a year. I’d probablly consider suicide if I had to go through the whole process from scratch with new carers again.

It may have been partially due to me sounding rude as to why social services manager doesn’t like me but that’s because social worker gave me incorrect information.

Social worked said she would help with multiple things and then didn’t so I kept emailing them to help me. I Also wanted to whilstle blow and social worker said she would be then made me wait. and wait.. and wanted to do one visit per month max

Img 5499 photo full
(2 hours after post)
Quote this reply Report this reply to moderators

My comment didn’t work.. ok the comment worked and help has put it in the wrong order of comments on this thread. That’s strange

Jetmoo edited this post .

Wil someone read letter for my GP I wrote and tell me if its ok or not and tell me how to use less words?¬ ¬ Dear Dr , ¬ ¬ As you know I have cognition difficulties and struggle to have multiple people in my care. There is no discrimination. I had requested to have one nurse also and having new carers is a very difficult gradual process. I have had about 7 different social workers already which is very hard for me. I have difficulties processing so many different people and social situations. It affects my understanding of what is going on and makes it harder for me to make informed decisions.¬ ¬ I have test results that shows I am unwell, although I do not believe I am fully diagnosed. I would like eventually, when misunderstandings been resolved, to have the serology testing that you offered me. It was misunderstood that I declined all serology testing. I only declined testing for Lyme disease as I’ll be paying for this myself. Serraspot and Elispot testing for Lyme are known to give more accurate results. Please can I, in time, have serology testing?¬ ¬ You believe M.E is a physical illness, but I do not think you understand or believe the full extend of how badly it affects me. You noted that my ECG was likely elevated due to stress. M.E is known to affect the heart and breathing. You also said it was inappropriate for me to ask you for CCG funding to allow longer appointments to communicate with SALT. I disagree that it was inappropriate. ¬ ¬ M.E affects how I process information and under time pressure I can process incorrectly and then respond inappropriately which is partially why I need carers to support me with communication. M.E affects how I process information and under pressure I cannot process my understanding correctly given in a short amount of time, only to respond inappropriately which is partially why I need the people that assist and support me with cooperative communication. This is partially why I do not respond well when I am putunder in a position where I feel pressured to make decisions quickly, such as the words I speak or manner of how I do it. This happens most during 2 way speech interactions. M.E can make me come across as offensive and has resulted in personal relationship breakdowns .¬ ¬ We believe I have aspergers. Please can we arrange a meeting with yourself, Debbie (who is also a disabilities nurse), my mam and sister to discuss this? I think that the cognition struggles amplify aspergers and make it even harder to express myself appropriately. I can become very overwhelmed and distressed from sensory overload and time pressure to make decisions quickly, such as the words in the way I speak. This happens most during 2 way speech interactions. M.E can make me come across as offensive and has resulted in relationship breakdowns. ¬ ¬ We believe I have aspergers. Please can we arrange a meeting with yourself, Debbie (who is also a disabilities nurse), my mam and sister to discuss this? I think that the cognition struggles amplify aspergers and make it even harder to express myself appropriately. I can become very overwhelmed and distressed from sensory overload and time pressure of processing language and this all overloads me. Even the amount of visual stimuli in my room has at times caused meltdowns. ¬ ¬ You have said you do not understand my test results and could not offer the support I needed. Please seek guidance from Dr Myhill to learn about the test results and their implications. Without understanding my test results, I am being left in a dangerous position. Without NHS being able to understand my test results I feel unsafe and that you do not know how best to support me and nor does anyone else in the NHS.¬ ¬ Yours sincerely,¬ Jessica

Img 5499 photo full
(3 hours after post)
Quote this reply Report this reply to moderators

Thank you for all your time and help @Yorick it’s been really helpful!
Thank god I have people helping me.

Perhaps it’s best not stating which relationships have been broken down until having a face to face appointment. If the disabilities carer is there at aspergers appointment then she can talk about how even me and staff have had misunderstandings before and time taken to understand. Atleast then GP will not have those carer misunderstandings in writing so would not be able to use it against us.

What do you think?

Img 5499 photo full
(3 hours after post)
Quote this reply Report this reply to moderators

Even phone calls are recorded and I can’t risk making my carers look bad.

Billy mills
last online: 02/18, 4:01
Verified User (6 years, 6 months)
Long Term User
Shoutout0
#
(21 hours after post)
Quote this reply Report this reply to moderators

I think it looks good! Here is a version that uses a few less words. I just removed a few things that were redundant.

Dear Dr,

As you know I have cognition difficulties and struggle to have multiple people in my care. There is no discrimination. I had requested to have one nurse. Having new carers is a very difficult process for me. I have had about 7 different social workers already which is very hard for me. I have difficulties processing so many different people and social situations. It affects my understanding of what is going on and makes it hard for me to make informed decisions.

I have test results that show I am unwell, but I do not believe I am fully diagnosed. I would like eventually, when misunderstandings are resolved, to have the serology testing that you offered me. It was misunderstood that I declined all serology testing. I only declined testing for Lyme disease as I’ll be paying for this myself. Serraspot and Elispot testing for Lyme are known to give more accurate results. Please can I, in time, have serology testing?

You believe M.E is a physical illness, but I do not think you understand or believe the full extent of how badly it affects me. You noted that my ECG was likely elevated due to stress. Research supports that M.E is known to affect the heart and breathing. You also said it was inappropriate for me to ask you for CCG funding to allow longer appointments to communicate with SALT. I disagree. M.E affects how I process information. Under time pressure I can process incorrectly and then respond inappropriately which is partially why I need carers to support me with cooperative communication. This happens most during 2 way speech interactions. M.E can make me come across as offensive and has resulted in relationship breakdowns.

We believe I have aspergers. Please can we arrange a meeting with yourself, Debbie (who is also a disabilities nurse), my mam and sister to discuss this? I think that the cognition struggles amplify aspergers and make it even harder to express myself appropriately. I can become very overwhelmed and distressed from sensory overload and time pressure of processing language. This all overloads me. Even the amount of visual stimuli in my room has at times caused meltdowns.

You have said you do not understand my test results and could not offer the support I needed. Please seek guidance from Dr Myhill to learn about the test results and their implications. Without understanding my test results, I am being left in a dangerous position. Without NHS being able to understand my test results I feel unsafe and that you do not know how best to support me nor does anyone else in the NHS.

Yours sincerely,
Jessica

Img 5499 photo full
(22 hours after post)
Quote this reply Report this reply to moderators

Thank u @Lawn lovely 😊

Img 5499 photo full
(22 hours after post)
Quote this reply Report this reply to moderators

That does read abit easier

Img 5499 photo full
(22 hours after post)
Quote this reply Report this reply to moderators

J think i might add -

Research supports that M.E is known to affect the heart and breathing.

Billy mills
last online: 02/18, 4:01
Verified User (6 years, 6 months)
Long Term User
Shoutout0
#
(22 hours after post)
Quote this reply Report this reply to moderators

Good idea. I updated my reply to include that.

Img 5499 photo full
(22 hours after post)
Quote this reply Report this reply to moderators

Eeee my goodness. Im so stressed. Ill have a nervous breakdown one of these days

I need to write a letter to my social worker too yet.

And i have to have carers write them out because if i write letters then no one reads them and i need carers to bare witness to what is going on

Img 5499 photo full
(22 hours after post)
Quote this reply Report this reply to moderators

I need carers to monitor me and how they treat me

User photo 22810 561248
(1 week after post)
Quote this reply Report this reply to moderators

sorry am late, but the letter does look good for me, but as stated, english is not my first language.

A
⇧ Zoom to top

Help-QA supports basic Markdown, emoji 😁, and tagging friends with @username!