A Question About Health Services

[darkshine]

This one's about why I always get asked the same question and why that question is always asked.

 

Whether I see a GP, Care-Coordinator, Psychiatrist or whatever other job titles I can't remember - I always get asked the same question every time - this has been over the last 5 years now approx.

 

The question is this: What do you want us to do? (or similar)

 

I don't know why they always ask this question - I don't know why they always ask me what has to be done, and why I have to spend 50 hours on the internet finding things out when in my opinion it should be their job to know what method of dealing with something is most likely to work.

 

Also I see the question as pointless because even after 50 hours internet searching per time (exaggeration sometimes more time others less) when I go back and say well, we could try this, or that, and then they just listen and nod and nothing gets done anyway.

 

I don't like asking for help, I don't like needing help, I don't know why they won't help, I don't know why they can't help, and I definitely don't know why they keep asking me what I want them to do when I don't always know what the answer to that is - and it really doesn't make sense cuz surely they must know some things as part of their job and have a knowledge of what's available and what could work...

 

Can anyone explain this for me as I'm lost and I find this really confusing. Am happy to answer questions as I haven't included everything here to save space - so have tried to judge whether I've said enough or not and appreciate that I may have misjudged it

 

Thanks

 

Darkshine

[Mumble]

The question is this: What do you want us to do? (or similar)

Oooh yes, get this regularly. I used to interpret it as 'well there's nothing normal meds can do for you / it's in your head / stop wasting our time so what do you expect us to do'?

 

It turns out that some 'clever' person somewhere in health policy decided to write this in to the guidelines for dealing with various conditions. It's about 'involving the patient' or some such nonsense. Oh, and I know a few people not on the spectrum who have interpreted this the same way as me, done lots of research like you, etc. I don't think it's a spectrum 'thing'. Someone however needs to tell these 'clever docs' just how much concern/anxiety this question causes.

 

Now, as to dealing with it - well I have plenty of experience of different consultants, so I've tried a few things. It depends on the doc and your relationship with them. My consultant I see every few weeks and have a good relationship with still keeps asking this (I think he has a check list of questions in his head!), so he gets a pretty short 'mend me please' answer. With others this wouldn't work (some have a serious lack of humour ) so they get told what I want to achieve:

I want to be able to go swimming

I want to be able to sleep through the night without pain

I want to stop feeling sick

 

Etc.

 

This sems to work as it gives something to focus on (for both you and doc). Then leave the actual medication and finding a solution to them.

[KezT]

It is a standard question and they ask it for a varity of reasons -sometimes because they are too lazy to look for the answers, but more often to involve you in your treatment, to ensure they have grasped what the "real" issue is, or as a reality check: "I want you to cure me" would be answered by "that is not possible, but we can look at ways to manage your anger".

 

Also patients go to teir doctors (in most cass) with an idea of what they want - counselling, drugs, a referral. They might not know what TYPE of counseling, drugs, referral etc, bu if the GP sends them away withsomething they didn't want, it can be counterproductive, expensive and just a waste of everyone's time - so i's wrth asking

[baddad]

Simplest answer (and not meant as flippant/whatever)... What do you want them to do?

 

That is:

 

What are your problems?

 

Do you want to resolve them?

 

Why do you think they arise?

 

and then a variety of questions/answers arising from that.

 

So, if, for example, you have a problem socialising, when they ask 'what do you want us to do?' you could say, 'I would like you to help me develop some strategies that will help me to socialise more...'

 

It's frustrating and something of a cliche, I know, but it all comes down to what you can / are willing to do for yourself. Other people can only help you achieve those things, they can't achieve them for you. And for them to help you they also have to know what help you want and the degree to which you will (or possibly can) work with them to achieve it. Sometimes the things disabled people want aren't acheivable - I'm not talking about big things like luxury yachts etc, just simple things like (i.e.) the opportunity to live independently - and there can be all sorts of reasons for that. The only way forward, then, is to adjust expectations accordingly, because that is the reality with which that person has to live. It can be painful coming to terms with that, but it is less painful in the long term than always feeling one has 'missed' something that was never actually available to one in the first place.

 

Offering an example from my son's life it is unlikely he will be able to develop a very wide network of friends, despite being outgoing and wanting to do so, purely because he will always be slightly 'different' in the way he interacts and people generally don't respond very nicely to difference. [NB before anyone jumps in I'm certainly not lowering any expectations 'for' him, and I'll be chuffed as punch if I'm ultimately proved wrong ] Hopefully he will have some good friends who accept him as he is (or largely as he is - like everyone he has his faults, and it would be patronising if his friends didn't acknowledge and/or occasionally fall out with him over them), and that will be his reality, but he is unlikely to be 'the life and soul of the party', and if he does become that it may well be by way of a 'front' that is a double edged sword in it's own right.

 

A quick note on the example of independent living (an in no way assuming this as a 'goal' of yours, it's just a good example) -

 

CAMHS whoever say 'what do you want us to do?'

You say 'I would like to know whether I could, and perhaps have the opportunity to, live independently.'

 

what CAMHS can then do is enrol you or point you towards services that can help in that regard. That would (possibly) involve risk assessments and stuff like that, maybe accessing adult education services to learn basic food prep / cookery skills and other household managements skills (including budgeting etc).

 

My Nephew, now 22, has been living semi-independently since he was 18. He has autism and MLD. Over the past four years the levels of practical support he needs have dinminished to the point that he is now looking to move out of his current flat where staff are 'on call' 24/7 and into a flat where staff 'pop in' to help with specific things (and to check up, if we're honest a couple of times a week. He works in a job he enjoys greatly, and socialises at his local with his small group of friends and with the few clubs he belongs to (one for people with ASD's and two 'mainstream' sports). In a nutshell, none of those things could have been achieved without identifying what he wanted, setting realistic goals and targets to enable their achivement and then making those things happen, by making sure the people who could help were helping.

 

TBH it was bl00dy hard work, and most of the phonecalls, letters, key meetings etc were down to me, so I can appreciate it's a more difficult task if you haven't got someone to take that stuff on with or for you... but if you've got a care-coordinator and a psychiatrist already in the loop you actually have more professionals on the case than he had when we started (he'd just been handed on from the children's disability team to adult services and had no designated case worker)...

 

Sorry, much longer answer than I intended, but I hope it's helpful. The next time they ask 'what do you want us to do' tell them what you want to do, and ask them to help you make it happen. Make a list before you go.

 

What not to do when they ask 'what do you want us to do'? : shrug shoulders in 'I dunno' gesture and put on headphones and listen to NIN

 

L&P

 

BD

[darkshine]

Wow - well that's a pretty long lot of replies already!! I just "dropped in to have a peek" and wasn't expecting anything cuz I think a lot of people think some of my questions are stupid - but this question was obviously a better one

 

Thanks everyone so far - I will read everything in detail when I done me studying - like I said it just surprised me to get a biggish response so far so had to say ta for what's already here and that I'll be back later to read and reply - but if I don't study first I won't do it (I'd rather read all this though )

[Mumble]

What not to do when they ask 'what do you want us to do'? : shrug shoulders in 'I dunno' gesture and put on headphones and listen to NIN

Damn.

 

Thanks for the 'I'd like a luxury yacht please' idea though. I'll give it a try at the next available opportunity.

 

 

(I'd rather read all this though )

Read it Read it Read it Read it Read it Read it Read it Read it Read it Read it Read it Read it Read it Read it

 

 

 

[darkshine]

Read it Read it Read it Read it Read it Read it Read it Read it Read it Read it Read it Read it Read it Read it

Your a (can't think of a tame swear word that illustrates that I'm joking so pick ya own)

I am so glad I didn't read this earlier or I might have been into not doing me work

It wouldn't take much!!

[darkshine]

And!! It semi worked cuz I was having a sneaky break and you made me respond to that at least

[philipo]

Trust yourself,you know a lot more about it than the nhs,they can help but only by knowing what you want.I find that the nhs 'words' never match the reality.Like the nhs is some dissasociated'cult' ,far more concerned with how it appears to itself than the pactical reality.Anyway,it's their jobs next,pretty soon you'll start meeting nhs staff down the jobcentre,it will give you the oppertunity to give em some coping skills advice,like how to deal with anxiety and depression!!!Self help/awareness is the greatest,asd or not.

[darkshine]

Oooh yes, get this regularly. I used to interpret it as 'well there's nothing normal meds can do for you / it's in your head / stop wasting our time so what do you expect us to do'?

Yeah that's part of what I've thought - amongst other things...

 

Thanks for the explanation - makes a little more sense but it is still maddeningly frustrating

 

Your advice seems to be good advice and I do try to do this but I get the same response and then my reasoning skills fail me in the frustration of not knowing everything about everything, but maybe there are ways I can improve this?

 

I definitely get better responses from some though who have more of a sense of humour and am trying to get the most out of those appointments when I get them - I will think more about practical things that can help - but it is part of the problem of me not knowing the answers but maybe what I reply to BD in a bit will aid my explanation of this and maybe how I go about it....

 

Thanks

[Mumble]

Something else I do that may help with some appointments. I always write down some brief notes under specific headings for appointments (changes depending on who I'm seeing, context etc.) but stuff like history, symptoms, effect on daily life. Depending on who I'm seeing / how I'm feeling I'll either give it to them to read or use it to help structure what I need to get across.

 

Because I know to expect the 'what do you want me to do?' question, I sometimes put on the writing 'what I would like' (and if applicable 'what I do not want') - this aids a discussion and ensures I go away feeling that my needs are considered. It also helps with adding some realisticness (yes that is a word - I say so! ) and kinda eases into the feasibility discussion I hate having.

[darkshine]

It is a standard question and they ask it for a varity of reasons -sometimes because they are too lazy to look for the answers, but more often to involve you in your treatment, to ensure they have grasped what the "real" issue is, or as a reality check: "I want you to cure me" would be answered by "that is not possible, but we can look at ways to manage your anger".

 

Also patients go to teir doctors (in most cass) with an idea of what they want - counselling, drugs, a referral. They might not know what TYPE of counseling, drugs, referral etc, bu if the GP sends them away withsomething they didn't want, it can be counterproductive, expensive and just a waste of everyone's time - so i's wrth asking

Someone told me that they do it even if you need an operation so that they are covering their backs from people complaining about being given wrong advice - dunno how much truth there is in that...

 

I have an idea of what I want but not many ideas about how to go about it...

[darkshine]

Trust yourself,you know a lot more about it than the nhs,they can help but only by knowing what you want.I find that the nhs 'words' never match the reality.Like the nhs is some dissasociated'cult' ,far more concerned with how it appears to itself than the pactical reality.Anyway,it's their jobs next,pretty soon you'll start meeting nhs staff down the jobcentre,it will give you the oppertunity to give em some coping skills advice,like how to deal with anxiety and depression!!!Self help/awareness is the greatest,asd or not.

I wish I did know enough philipo, but the times of worry certainly don't seem to be helping people out much - whichever side you look at xx

[Mumble]

I have an idea of what I want but not many ideas about how to go about it...

Well that's okay, 'cause that's what they're asking. You state clearly what you want, it's their job then to see how feasible it is and work out the best way to go about implementing it.

[darkshine]

Sorry I've took so long to respond - You've written a lot here BD and I've read it 3 times now - its very hard to take in everything you said so that's why it's taken me longer cuz I had to think about how to answer in a way to enable the most constructive response - possibly from both of us

 

(I've edited some of these quotes slightly but not for any reason other than clarity for myself as I reply)

 

I thought this example was really clear

So, if, for example, you have a problem socialising, when they ask 'what do you want us to do?' you could say, 'I would like you to help me develop some strategies that will help me to socialise more...'

And I said this and I got asked the same question and I didn't know the answer then its really confusing that I know there is a right answer but I keep getting it wrong!

 

How to do all this for everything is only clear to a point - it seems impossible to figure out

Simplest answer - What do you want them to do?

What are your problems?

Do you want to resolve them?

Why do you think they arise?

and then a variety of questions/answers arising from that.

Is a lot harder to work out and I don't know if I can without someone pointing things out - wanna apply for that temporary job? no seriously - cuz if you can respond in as clear examples as the one above for some of it then I reckon I might actually have a chance to improve this situation that I have been doing this for 10 years.

 

My problems are these:

• What feels like some degree of social phobia
  
• At times extreme dislike of society with tendencies to generalise and write everyone off / tar everyone with same brush based on assumptions
  
• Limited social relationships/ made worse by trust, communication and fear issues
  
• Trust issues and general mistrust of people especially beginning with strangers and continuing as this new person is gauged/assessed
  
• Anxiety
  
• Depression
  
• ‘Agoraphobia’ in populated areas feelings of extreme anxiety outside
  
• Eating issues related to type of food, taste, consistency, looks, amount, food touching, fear of being sick – some foods avoided in case sickness caused or what the food would be like/look like if thrown up
  
• Fear of being watched – if this happens while attempting a task cannot perform task effects also reduce ability to speak, start stuttering and communication trails off or involves reaction of excessive anger
  
• Issues with low self-esteem, self-image, dislike of body and self
  
• Sees self as inherently bad
  
• Lacking sense of achievement
  
• Feelings of not belonging or fitting in , separateness in a negative way including feeling of rejection by society
  
• Obsessive behaviours including: collecting, organising and the concealment of certain items through fear they will be stolen, looked at or touched
  
• Go to excessive lengths to avoid attention including moderation of behaviour, actions, verbalisations, manner, volume/tone of voice, breathing, looks, (clothing) eye contact and facial expressions
  
• Low mood
  
• Lack of motivation
  
• Negative and critical thinking
  
• Feelings of inferiority
  
• High standards
  
• Thinking distortions – black and white, over generalising, negative filter other Vs. self,
  
• Lacking in confidence
  
• High sensitivity to movement, noise and proximity of people and traffic when outside. Feel exposed, vulnerable, anxious, stressed, tense, nervous, insecure and uncomfortable, which makes any form of concentration difficult as the excessive noise and movement is very distracting.
  
• Dislike of being touched
  
• Difficulties maintaining ‘normal’ relationships
  

Yes I want to resolve them all

 

It's frustrating and something of a cliche, I know, but it all comes down to what you can / are willing to do for yourself. Other people can only help you achieve those things, they can't achieve them for you. And for them to help you they also have to know what help you want and the degree to which you will (or possibly can) work with them to achieve it.

I am willing to do anything that I am able to do, and if I'm not able then I'm willing to learn how to be able.

 

TBH it was bl00dy hard work, and most of the phonecalls, letters, key meetings etc were down to me, so I can appreciate it's a more difficult task if you haven't got someone to take that stuff on with or for you... but if you've got a care-coordinator and a psychiatrist already in the loop you actually have more professionals on the case than he had when we started (he'd just been handed on from the children's disability team to adult services and had no designated case worker)...

And I feel like I've been getting nowhere!! but at the moment I think have an opportunity with one of the people I see and to change that if I can only communicate properly about all this - I gotta chance and I don't wanna waste it.

 

Darkshine

[darkshine]

And Baddad?

 

 

Just to set the record straight

What not to do when they ask 'what do you want us to do'? : shrug shoulders in 'I dunno' gesture and put on headphones and listen to NIN

the man asked if I wanted to sit in, making it clear that he wanted to talk to my parents and not me, I couldn’t face sitting in the waiting room and the other option was the street - so I said I’d put music on or I’d keep interrupting and I felt it would make it easier for my parents to talk to him. Everyone said they were fine with that. And although in some ways I might have been stickin my fingers in my ears going lalala not to hear, I wasn’t actively being rude – I did check it was ok first! And I didn't say dunno and I never take music to any other meetings - it was that one time, and everyone appeared to relax when "I'd gone" - I always try to be as cooperative as I can - even when I stutter and can't even remember how to speak or what I want to say - I am never rude on purpose cuz it'd be rude when they are trying to help me...

[darkshine]

Well that's okay, 'cause that's what they're asking. You state clearly what you want, it's their job then to see how feasible it is and work out the best way to go about implementing it.

That huge list in my reply to BD - that's what I wanna have help with - I've given it to at least 3 different people over the last 3 years

[Mumble]

My problems are these:

• What feels like some degree of social phobia
  
• At times extreme dislike of society with tendencies to generalise and write everyone off / tar everyone with same brush based on assumptions
  
• Limited social relationships/ made worse by trust, communication and fear issues
  
• Trust issues and general mistrust of people especially beginning with strangers and continuing as this new person is gauged/assessed
  
• Anxiety
  
• Depression
  
• ‘Agoraphobia’ in populated areas feelings of extreme anxiety outside
  
• Eating issues related to type of food, taste, consistency, looks, amount, food touching, fear of being sick – some foods avoided in case sickness caused or what the food would be like/look like if thrown up
  
• Fear of being watched – if this happens while attempting a task cannot perform task effects also reduce ability to speak, start stuttering and communication trails off or involves reaction of excessive anger
  
• Issues with low self-esteem, self-image, dislike of body and self
  
• Sees self as inherently bad
  
• Lacking sense of achievement
  
• Feelings of not belonging or fitting in , separateness in a negative way including feeling of rejection by society
  
• Obsessive behaviours including: collecting, organising and the concealment of certain items through fear they will be stolen, looked at or touched
  
• Go to excessive lengths to avoid attention including moderation of behaviour, actions, verbalisations, manner, volume/tone of voice, breathing, looks, (clothing) eye contact and facial expressions
  
• Low mood
  
• Lack of motivation
  
• Negative and critical thinking
  
• Feelings of inferiority
  
• High standards
  
• Thinking distortions – black and white, over generalising, negative filter other Vs. self,
  
• Lacking in confidence
  
• High sensitivity to movement, noise and proximity of people and traffic when outside. Feel exposed, vulnerable, anxious, stressed, tense, nervous, insecure and uncomfortable, which makes any form of concentration difficult as the excessive noise and movement is very distracting.
  
• Dislike of being touched
  
• Difficulties maintaining ‘normal’ relationships
  

Can you group this into say 3 or 4 major groups and have the above as sub-points, i.e. 'I want to improve X which I think needs to involve addressing Y and Z'

 

Can you identify who is best placed to help you with each, rather than taking such a long list to every person which may be over whelming to them?

 

Or can you prioritise this list - if you could only have 1 or 2 addressed, which would they be? Then which?

 

BTW, I know I go on a bit about it, but most of your list I think could be addressed through a CBT approach to work on how you think about things and finding alternative ways of thinking. Have you tried this?

[darkshine]

It just occurred to me that this might all sound very negative like I'm just sitting here going "help me" or "sort my life out for me" - I'm not doing that - I have another list that is nearly as long as the one earlier of which I am attempting to deal with myself and with my carer/friend

 

I had an email from the melatonin sending people that they are sorry for the delay and it'll arrive in next few days, in the meantime I have drawn up a realistic structure chart for the organisation of my days so that there is routine, planned eating times (to help deal with part of food problem - as only getting around 700-900 calories from food), I have planned times to go out with for a walk so I'm not just sitting inside all day, and there's other things on there too like study slots, housework, free time, and a highly detailed plan of how I will construct my evening to get to sleep to attempt to try this melatonin thing in the best way I can which involves a step by step process so I know what I'm doing and when in order to try to sleep at night and have a more normal routine.

 

I've spoken with the uni (via carer/friend and also myself via email) and have a detailed plan of how to move past my current struggle - we are then planning another plan to get me to the end of the course and I am involved in coming up with these plans which are then looked at and suggestions are made to make it better and stuff.

 

I'm taking my medication more regularly - even though I never want to take it again and am hoping to come off it at a realistic time.

 

Also there's a number of other things that take continual effort that I have put into place like communicating with some family members using the hated facebook - but I do it cuz on my "other list" was improving relationship with other family members - but stupid things like clicking a "like" button seems to keep a lot of em happy and get a lot of comments that I have to reply to in a normal way - which has helped a bit with practising how "I am supposed to talk"

 

I've also organised a fair few "household" issues and put steps in place to resolve others.

 

There's other things - they are all like this kinda thing and some more mundane sounding but they are all hard to do, and things that I wasn't doing a year ago - I just wanted to say cuz I didn't want it to sound like I think I shouldn't have to do anything or that I'm not willing to either - but I'm still living 98% of the week in my home and feel that a lot of the issues I listed earlier would help me to move forward if I could get outside by myself and cope with social situations.

[darkshine]

Can you group this into say 3 or 4 major groups and have the above as sub-points, i.e. 'I want to improve X which I think needs to involve addressing Y and Z'

 

Can you identify who is best placed to help you with each, rather than taking such a long list to every person which may be over whelming to them?

 

Or can you prioritise this list - if you could only have 1 or 2 addressed, which would they be? Then which?

 

BTW, I know I go on a bit about it, but most of your list I think could be addressed through a CBT approach to work on how you think about things and finding alternative ways of thinking. Have you tried this?

I reckon the key things are the issues I have with me - and the issues I have with people.

 

With people - I figured that exposure was the best way but I have panic attacks when I'm on my own cuz I can't remember to be doing everything at once while dealing with everything at once if you know what I mean.

 

The issues with me, need to be talked about and dealt with.

 

So my next thought was that CBT would help - I am on an assessment waiting list waiting for appointment to see if I qualify (still but am hopeful it will come soon).

 

Maybe my list is overwhelming... it overwhelms me since this is only half of it (see my other reply)

 

I'm getting upset about it now so will stop here - but I will try what you said with the grouping thing - its just so hard to know how to actually resolve them - like what can I actually do as well as what can they actually help me to do and I don't know how to make some of the things go away...

[baddad]

Hi again darkshine -

 

Mumble's just pretty much said what I was going to say - prioritise. Take one step at a time, in a logical sequence (i.e. there is no point worrying about 'friendhships' if social phobia means you don't have the opportunity to make any friends and trust issues would get in the way if you did have opportunities) and make sure your addressing the problems to the right people.

 

incidentally, if regrouping the list I think 'social anxiety' as an umbrella term would knock a big dent in the number of items and aid focus. Ditto self esteem, Ditto mental health (mood swings/depression etc), ditto phobias/sensitivities.... Of course, if you put those things into a venn diagram there will be overlaps that complicate things, so better to look at them as separate issues initially and them how they interconnect/interact later.

 

groundwork done, you've identified the areas you want to concentrate on, and probably the different 'disciplines' you need to be focussing on.

 

SOCIAL: You've got to 'do' some. That means looking, finding and going. Evening classes? Special interest groups? Support groups? etc etc.

SELF ESTEEM: Counselling? CBT etc?

MENTAL HEALTH: existing psych and further referrals.

PHOBIAS / SENSITIVITIES: Aversion therapy?

 

Don't know much about any of those things so others can probably give you better advice, but really I think the best advice will come from professionals etc covering those fields. It may be hard to separate things out, but if you can focus on one of the above areas - the one you feel most 'critical' or disabling - work on that and put the others on hold for a while.

 

HTH

 

L&P

 

BD

[Mumble]

I will try what you said with the grouping thing - its just so hard to know how to actually resolve them - like what can I actually do as well as what can they actually help me to do and I don't know how to make some of the things go away...

Use Inspiration to create a pretty picture of your needs! I know you like the programme really.

 

in order to try to sleep at night

Step one - turn off forum at night...

 

EDIT: Just wanted to add, sorry if the above comes across as flippant, it's not meant in any nasty way, I'm just bloomin knackered and my sense of humour gets even more warped when lacking sleep.

Edited August 9, 2011 by Mumble

[darkshine]

Ok I have a grip on myself a bit - sorry - didn't want to say more when upset cuz it wouldn't help - but I reckon I can maintain said grip

 

I still can't figure inspiration out and I have so much to do (am about 6 weeks behind on course) that I daren't spend too long figuring it out - maybe once course done in oct...

 

My routine has pc off by 10.30 or 11 - can't remember which yet as routine not applying til assignment done which is requiring work at all hours in order to finish - am hoping to have melatonin here by the end of the week so that while I stare mistrustfully at whatever the pills in the bottle look like (including touching them, smelling them and generally doing other weird things) I can finish the assignment for monday and start new routine - that's the plan anyway...

 

EDIT - you sneaked an edit in!!!! figured I could have one too!!! You sounded just fine mumble no worries

Edited August 9, 2011 by darkshine

[darkshine]

incidentally, if regrouping the list I think 'social anxiety' as an umbrella term would knock a big dent in the number of items and aid focus. Ditto self esteem, Ditto mental health (mood swings/depression etc), ditto phobias/sensitivities.... Of course, if you put those things into a venn diagram there will be overlaps that complicate things, so better to look at them as separate issues initially and them how they interconnect/interact later.

 

groundwork done, you've identified the areas you want to concentrate on, and probably the different 'disciplines' you need to be focussing on.

 

SOCIAL: You've got to 'do' some. That means looking, finding and going. Evening classes? Special interest groups? Support groups? etc etc.

SELF ESTEEM: Counselling? CBT etc?

MENTAL HEALTH: existing psych and further referrals.

PHOBIAS / SENSITIVITIES: Aversion therapy?

 

It may be hard to separate things out, but if you can focus on one of the above areas - the one you feel most 'critical' or disabling - work on that and put the others on hold for a while.

I think my biggest issue that happens over and over is that I can't separate them very easily - although my list had 3 instead of 4 groups (yours is better cuz its clearer) I just go round in circles cuz I think the most crucial is the social, but if I'm the problem (in terms of esteem, MH, phobias) then the social is much harder to do while feeling the way I do (especially the way I feel about myself).

 

So then I think - well it must be me I need to sort! But because I have the social problems and difficulty in communicating - oh never mind - I go round and round and round otherwise - nothing against you - its me... I don't want to sit here sounding like I'm making excuses or arguing everything either - I really appreciate the help from you both and you are helping!!!!

 

So this psychiatrist I see - I have 2 apps with him next month I had one anyway but I requested a second and he agreed - I spent 3 days building the courage and planning what to say and getting halfway through the number and hanging up about 20 times before I found the guts to ask to speak to his receptionist and ask if he'd call me back - which he did and he patiently waited while I found my bit of paper so I could talk to him - and then he agreed when I said there was other stuff I wanted to sort out.

 

I really don't want to mess up this appointment (the first is with EVERYONE and the agenda is set for that like a review) BUT the 2nd one at the end of the month (sept) is just me on my own with him, he's the one who dx'd me and stuff. I'm so scared I'll mess it up - and obviously my reasoning to him for this meeting was valid or he wouldn't give up his time for nothing - I said I want to move forward, I said I wanted to discuss ways of doing that, I said there was stuff I should have said that I didn't say, I said I wanted to be off his list in a years time.

 

again - I'm so scared I'm gonna get there and mess it up - which is why I'm trying to find out how to do all this but I don't know how to do all this and what you are getting here, this lucid-ish conversation, and to an extent clarity and directness and everything you see from me - its all new - I've spoken to more people since joining this forum than I've spoken to in the last 13 years, I've had more people listen to me than in the last 20 years...

 

And honesty too - I've never had the chance to be me before, to actually be me and find that not everyone hates me, and that maybe some people even like me and its its something weird and I don't hardly ever get to be me and I barely ever let people see me, and this guy I'm gonna see needs to hear me without me losing the plot like I'm doing now - cuz if I just sit there and cry and drip snot everywhere it aint really gonna get me anywhere...

Edited August 9, 2011 by darkshine

[darkshine]

I have purposefully left this a day to think about and I wonder if anyone can assist me further - I apologise that I seem to have lost my words again so it might sound a bit er stupid or rough and ready type thing.

 

This 2nd appointment is vitally important to me I think it is a chance I have been given - as explained earlier.

 

I have sat and looked at my list several times - and it IS overwhelming. so for ease if I borrow mumble and bd's ideas about grouping and use the 4 that bd said that leaves me with 4 areas I want to address.

 

Also I like mumbles idea about notes for structure - but how do I do them without writing war and peace?!?

 

So following this in a logical progression I say I have 4 areas to deal with

 

:wallbash: :wallbash:

 

I keep getting this far and failing, I swear I am not being purposefully stupid.

 

 

Lemme try again - with a scenario - of the first appointment

 

I arrive, and then after everything I get chances to talk.

 

I say that I think there are 4 main areas that I wanna deal with and that I think the key areas making things seem impossible are to do with social stuff and MH - that I think dealing with these will make the biggest difference and that the other 2 (what? can wait? don't matter? might just get sorted along the way? just go in the pipeline for later?)

 

Anyway - they are then going to say something like "well how do you want to deal with it?"

 

And I'm lost again... I'm waiting for cbt assessment and I don't know what else I can do!

 

 

The thing is I just cannot figure out what the logical order is or what to do or anything, it feels like I'm trapped because its like a chicken and egg thing - I really hate sounding this stupid and I know you've already said loads and I hate asking again but I don't understand

[Mumble]

I arrive, and then after everything I get chances to talk.

 

I say that I think there are 4 main areas that I wanna deal with and that I think the key areas making things seem impossible are to do with social stuff and MH - that I think dealing with these will make the biggest difference and that the other 2 (what? can wait? don't matter? might just get sorted along the way? just go in the pipeline for later?)

 

Anyway - they are then going to say something like "well how do you want to deal with it?"

 

And I'm lost again... I'm waiting for cbt assessment and I don't know what else I can do!

 

Firstly apologies if the following makes no sense, I'm on drugs (medicinal ones!! ) that make me completely dopey (Yeah, yeah, I know, no chanmge there then. Ha ha. )

 

Anyways, if I remember correctly, this is your meeting with multiple professionals? If so, I would be tempted to kinda twist this a bit by looking helpful but making them do the work (that's what they get paid for, damn them!! )

 

So, on a clean document, I would (if they're all relvent to this meeting) type your 4 categories as headings, numbered and bolded (yeah, I know, I'm making up English again there...)

 

Under each, I would give a concise example, perhaps using something from your original list.

 

Then under the example, what you would ideally like to achieve, i.e. I want to manage going to x without feeling x

 

Then you could put either if relevent to some or if all then at the bottom, something like "I'm currently awaiting CBT which I hope will help me with x, y, z, however I would be grateful to discuss other options you have that may support me in achieving my aims and either work alongside or help me to benefit as much as possible from the CBT work"

 

Then print copies of this document for everyone and when you get an opportunity to speak near the beginning (or even better if you have a key worker or someone you can speak to before who can then disrtibute it on your behalf) you say "I thought it would be helpful to have an agenda for this meeting in order to ensure we're all working together on the same issues for the best possible outcome and as such I've put together an outline of what I see as my major issues and how I would hope thy can be addressed."

 

Ta da!

 

 

One thing I was thinking - am I right that you're at uni? If you are, does your uni offer counselling services? That's how I access longterm CBT which has been useful and I've been able to get more help than the standard support offered by the NHS, and I've now been referred on to external NHS services for ongoing support. Being in contact with the uni service, who have also liaised with my GP, has really helped in pushing the NHS referral forwards.

[darkshine]

Anyways, if I remember correctly, this is your meeting with multiple professionals? If so, I would be tempted to kinda twist this a bit by looking helpful but making them do the work (that's what they get paid for, damn them!! )

 

So, on a clean document, I would (if they're all relvent to this meeting) type your 4 categories as headings, numbered and bolded (yeah, I know, I'm making up English again there...)

 

Under each, I would give a concise example, perhaps using something from your original list.

 

Then under the example, what you would ideally like to achieve, i.e. I want to manage going to x without feeling x

 

Then you could put either if relevent to some or if all then at the bottom, something like "I'm currently awaiting CBT which I hope will help me with x, y, z, however I would be grateful to discuss other options you have that may support me in achieving my aims and either work alongside or help me to benefit as much as possible from the CBT work"

 

Then print copies of this document for everyone and when you get an opportunity to speak near the beginning (or even better if you have a key worker or someone you can speak to before who can then disrtibute it on your behalf) you say "I thought it would be helpful to have an agenda for this meeting in order to ensure we're all working together on the same issues for the best possible outcome and as such I've put together an outline of what I see as my major issues and how I would hope thy can be addressed."

 

Ta da!

 

 

One thing I was thinking - am I right that you're at uni? If you are, does your uni offer counselling services? That's how I access longterm CBT which has been useful and I've been able to get more help than the standard support offered by the NHS, and I've now been referred on to external NHS services for ongoing support. Being in contact with the uni service, who have also liaised with my GP, has really helped in pushing the NHS referral forwards.

Watch the faces

 

That is bloomin' genius mumble I reckon I'll have enough time to do that before the meeting - maybe I should have a shot at it and see if it makes sense on here first if you or anyone else fancies volunteering for a critical analysis of my attempts at sorting my life in a clear communicative way?

 

The courses I do are with the O.U - don't think they go that far with help (although they are generally quite helpful - to an extent - depends what your doing...)

 

If you are up for looking at my attempt I can post it in the next week-ish - it'd be good to have opinions on whether it is making sense and going in the right direction. Discussing this has been helpful so far in developing my thoughts on how to move forward and I think that although I still may sound thick when I don't understand (and there is a lot to deal with) - but I do feel like I am understanding that little bit better since talking about it.

 

Best & Thanks

 

Darkshine