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Post by fuzzywuzzy on Jul 10, 2013 19:58:31 GMT
A life with previously unrecognised (me) and undiagnosed ADHD tends to involve not just mid-life crisis but pretty much whole life crisis.....probably don't need to tell you that, but since it's my story...
Now that the problem has been identified....all by me.....self-diagnosed bipolar disorder and then fought long, hard battle for two years to get it recognised and treated, begrudgingly by Maudsley but brilliantly by the real experts at University of ***. Unfortunately, at the heart of bipolar disorder is executive dysfunction caused by ADHD, so went to GP, tried to fob me off, wouldn't have it, provided brilliant evidence in the form of old school reports, letter from my first ever employer (traced him back to Malta), an official diagnostic form completed by me and a letter from my Dad stating all my relevant problems....a VERY long list!
up to date situation.....been referred to Maudsley.....awaiting appointment
My Agenda/Promise to Myself/Order of Priority:
1. My Daughter - have obtained the ADHD diagnosis for her - have fought to get referral to Dr Gillian Baird at Guy's Hospital for assessment of bipolar disorder - runs in the family .....I can trace it back in me to when I was 7! Without correct dual diagnosis she will receive incorrect and potentially harmful medication as opposed to medication which can actually PROTECT her brain! Trust me, I'm an expert! Have applied for DLA for her.....AND asked for a Statutory Assessment of Educational Needs. Feeling good....proud.....and in control....for a change!
2. Money - increase initially purely via DLA/carer's allowance etc.
3. My Health - diagnosis for me/ medication for me/ coaching for me whether external or self-taught/better diet/exercise etc.
4. Complete Book
5. Advise others.....either through coaching one to one or training course
6. Steer daughter to superstardom! Allow her to keep 10% of her income! Only joking on this one!? All I want is for her to be happy, healthy, helped with her disability whilst being acknowledged for her considerable talents
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Post by fuzzywuzzy on Jul 10, 2013 20:21:07 GMT
7. Strive to Become a GODDESS 8. Educate along the way to remove stigma, discrimination and misunderstanding......those capable of being educated......and ignore the rest, even if that includes family (but hopefully not ) because I know exactly what I'm doing, it is for the best and neither me nor my beautiful daughter function better with stress....unsurprisingly!
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Post by fuzzywuzzy on Aug 1, 2013 22:07:50 GMT
Ok .....DLA duly received for naughty daughter.....and at the first attempt.......yay! Got sooo many things I want to get for her...black out blinds being number one on the list....and possibly lightbox for when clocks change....I could use it too The local council met yesterday to decide whether to carry out an educational assessment....they reject 90% first time round so I'm already gearing myself up for an appeal and putting further evidence together....I am fully ready for battle .....will find out soon enough MY appointment at the Maudsley is now just four 'sleeps' away.....strangely, I don't feel nervous as everyone else has talked about.....
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Post by fuzzywuzzy on Aug 2, 2013 23:41:00 GMT
Ok, so bloody local authority rejected my request for educational assessment.... But I knew that was likely and have quietly, secretly and determinedly been preparing to do battle I phoned and found out, so before their letter of rejection even arrives through my letter box......my appeal will be winging it's way to them.......all 12 pages of it! I have researched it thoroughly, I know my stuff.....facts, figures, studies etc. and I hope to be informing you shortly that either they have suddenly had a change of mind .....or I will be facing them at a Tribunal
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gremico
Member's not posted much yet
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Post by gremico on Aug 3, 2013 0:33:35 GMT
I am in awe!!!!!! The suspense is going to kill me!!!!x
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Post by fuzzywuzzy on Aug 4, 2013 0:15:19 GMT
Thank you lovely lady......and thank you to everyone......great support...... I was a bit sneaky.....my daughter will eventually end up with a dual diagnosis.....so, knowing all too well that the application would be rejected first time round no matter what the content........I sent them a bit more down one particular route than another, the as yet undiagnosed condition, which I knew they would attempt to deny.......and purposely held some stuff back.....that way I could whack them out of the blue with lots of powerful new evidence...all related to the diagnosed condition! feeling mighty happy about it too x oh my God......just 2 more sleeps for me til Maudsley!?!?
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Deleted
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Post by Deleted on Aug 4, 2013 0:25:04 GMT
You sound like Miss Marple in your approach! Are you nervous yet?
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Post by fuzzywuzzy on Aug 4, 2013 0:33:13 GMT
Oh Petra.....see I was hoping more for ruthless assassin no....not nervous.....weird
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Post by Deleted on Aug 4, 2013 0:36:22 GMT
Not nervous? Yep, definitely something wrong with you, I knew it!
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Post by fuzzywuzzy on Aug 4, 2013 21:26:18 GMT
OH MY GOD.......JUST ONE MORE SLEEP TO GO!!!!! still not nervous I expect I'll be a nervous wreck by tomorrow mind you, I've got my mummy coming with me
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Post by JJ on Aug 4, 2013 21:52:52 GMT
OH MY GOD.......JUST ONE MORE SLEEP TO GO!!!!! still not nervous I expect I'll be a nervous wreck by tomorrow mind you, I've got my mummy coming with me Good luck for tomorrow FW, I have everything crossed for you and sending you lots love xxxxxxxx
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Post by fuzzywuzzy on Aug 4, 2013 22:22:55 GMT
Thank you JJ X x x I am now panicking about directions!
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Post by JJ on Aug 5, 2013 0:10:33 GMT
Navfree - v good free sat nav on iPhone (and prob android) xxxxxx
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Post by Deleted on Aug 5, 2013 0:44:36 GMT
Thinking of you FW. Really hope it goes well xxx
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Post by Deleted on Aug 5, 2013 17:59:57 GMT
How have you got on today FW? Is it good news?
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Post by fuzzywuzzy on Aug 5, 2013 19:53:13 GMT
Hi All... met today with the clinical nurse at the Maudsley....my first of two appointments...... Without a doubt the nicest person I have met to date in mental health Treated me like an intelligent person who had informed knowledge of my own condition, mainly through experience.... she listened to my symptoms.....that in itself is a first.....normally all they want is to write up a diatribe of my life Normally the second appointment, provided you 'pass' the first, is approx a month later.....(apparently they've broken it down to two sessions in order to cut down on waiting times, which are sometimes a year....in fact I only waited a few weeks....maybe I had a very strong case, I don' :Pt know......but good news is.....the next session for me has been fast tracked to next Monday so all looking brilliant!!! I am just soooooooooo happy!
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Post by JJ on Aug 5, 2013 22:18:44 GMT
So pleased all went well for you FW xxxxxxxxx
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Post by Deleted on Aug 5, 2013 22:59:39 GMT
Yes, me too. So far so good. Fantastic next appt is only on Monday did you go into your appointment like this ?
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Post by fuzzywuzzy on Aug 5, 2013 23:37:32 GMT
Thank you once again lovely ladies No I usually reserve for naughty daughter's school.....but I'm thinking of adopting it.....or .....on your behalf petra....(and on Jan's).....and on yours JJ if they mess you around with those meds who knows.....I may have that joy to come
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Post by Deleted on Aug 5, 2013 23:53:05 GMT
I'm toying with the idea of getting some guns and becoming a fugitive.
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Post by JJ on Aug 6, 2013 0:14:49 GMT
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Post by fuzzywuzzy on Aug 12, 2013 23:02:28 GMT
Hello all you wonderful people.... Well, this is a bit of a strange one......had my second appointment at the Maudsley (1st one last week and with clinical nurse) this time with psychiatrist, specialist in adult ADHD..... again very nice..... i had been led to believe that today I would know one way or the other whether I had the formal diagnosis......well I don't......instead I have to go on the waiting list for neuropsychological testing, again at the Maudsley, which should take about 4 months.....the testing should take about an hour.....and then I go back to the same psych to have the results explained to me... I don't feel deflated......I think they do believe that I do indeed have ADHD......I think they are just covering themselves where there is another brain disorder involved, in my case bipolar disorder......firstly because caution has to be taken with stimulants and mania....although I stressed that mine is hypomania and not problematic....and secondly because these impairments of concentration, inattention, focus and executive function are not always cut and dried and overlap whilst the lady that I saw first time was lovely, I feel that she so desperately wants to help that she overinflates your expectations and how long these things can take..... oh well....bit longer....
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Post by mighty on Aug 13, 2013 17:29:00 GMT
Treading carefully here, but how old is your daughter (i.e. adult, or school age, don't worry about being too specific). Just wondering why you want her diagnosed as bipolar. Not going to be rude or intrusive but just want to share I'm concerned it could do more harm than good, and she may not need it. But I don't know her obviously or the situation Also SEN applications tend to be more problematic with ADHD dx, if that's what you were referring to Some LEAs just won't consider it or provide funding, favouring things like autism, severe learning difficulties etc. Sorry to hear maudsley is taking a long time by the way.
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Post by jan on Aug 13, 2013 22:00:15 GMT
oooooo mighty babe , I suspect you will be able to hear the reply from where you are (as opposed to having to read it )
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Post by jan on Aug 13, 2013 22:08:39 GMT
i had been led to believe that today I would know one way or the other whether I had the formal diagnosis......well I don't......instead I have to go on the waiting list for neuropsychological testing, again at the Maudsley, which should take about 4 months... I don't feel deflated......I think they do believe that I do indeed have ADHD......I think they are just covering themselves where there is another brain disorder involved, in my case bipolar disorder......firstly because caution has to be taken with stimulants and mania....although I stressed that mine is hypomania and not problematic....and secondly because these impairments of concentration, inattention, focus and executive function are not always cut and dried and overlap oh well....bit longer.... Hi FB wasn't on yesterday congrats on getting through your second appointment must be a good thing though eh that they are being so thorough - - -just a bummer have to wait 4 months my physc said that the adhd meds can (in some people ) turn the hypermania into mania as do some antidepressants so best they are thorough in it. I hope they are that thorough where I get seen (if it ever happens ) nearly there (I always seem to be saying that to people on here )
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Post by JJ on Aug 13, 2013 22:16:42 GMT
Oh FW - I feel a bit deflated for you . - for the extra 4 months of waiting But on the positive side, they're being thorough and like you said, they think it's adhd.... And you get to do all the tests . I'd love to do all the tests
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Post by fuzzywuzzy on Aug 13, 2013 23:04:19 GMT
My Agenda/Promise to Myself/Order of Priority:
1. My Daughter - have obtained the ADHD diagnosis for her - have fought to get referral to Dr Gillian Baird at Guy's Hospital for assessment of bipolar disorder - runs in the family .....I can trace it back in me to when I was 7! Without correct dual diagnosis she will receive incorrect and potentially harmful medication as opposed to medication which can actually PROTECT her brain! Trust me, I'm an expert!
Helloooooo all you lovely ladies and thank you all for your support JJ - I will bring the tests back for you to do Jan - I am still crossing everything....please advise me when I can be relieved of crossing duty mighty.....I am writing a book all about bipolar disorder.....we are at the stage in this country with paediatric bipolar disorder where we were back in 1980 with autism, which was around the time that these 'experts' officially recognised it and therefore autism officially existed..... In the UK we are literally in the dark ages with regard to bipolar disorder, both in children and in adults..... I have 15 books all dedicated to childhood bipolar disorder......but I didn't need them to know of it's existence, I WAS that child......if I had been diagnosed early enough I could have been given medication which might have prevented me from ever having another episode.....furthermore, it would have protected me from the brain damage that can result from those episodes.......instead I have been given medication that made it permanently worse I have written to literally leading experts around the world at the cutting edge of research and knowledge and as I said to Jan, amazingly virtually every single one has replied, especially with regard to trying to help me to get help for my daughter....yet not one single so-called 'expert' has replied in this country.....what they are doing is putting their heads in the sand and hoping it goes away, whilst they leave beautiful, intelligent, articulate children to suffer without diagnosing them for years if at all.....probably thousands die without ever knowing.....or as I said, misdiagnosing them and making them more ill permanently....I don't intend to let that happen to my daughter.... Discussing it with my daughter has been the making of our relationship....she really understands herself, in a way that I never did, I was clueless that I had a brain disorder...... I have been very lucky too with whom I've come into contact with.....my daughter had been a total 'conundrum' to the school, they had never met a child like her.....as soon as I told them that I had realised I had bipolar disorder, that I could trace it back to when I was her age and that I thought she had it too, they supported me.....the Head Teacher just happened to have a brother in law with it and she said it suddenly made perfect sense to her! Of course, the reality is that some of these children diagnosed with ADHD actually have bipolar disorder (and some, like my daughter have both) so probably at least one in every primary school, maybe 2.... well, expect to see me on the news sometime soon, because I intend to 'educate' the experts in the UK about paediatric bipolar disorder.....in the meantime, my daughter's story will be appearing in a forthcoming edition of The Sunday Times Magazine....happy to chat to anyone who wants to know more about any of it
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Post by JJ on Aug 13, 2013 23:42:48 GMT
Wow FW - that's all so awesome xxxx
Really interested about yrs and daughter's bipolar - What meds did you take which made you permanently worse? You said somewhere else that you don't get the up stuff, just the down - is that cos that's the way it is or is that cos you take medication to stop the ups? What was / is it about your daughter that's bipolar only (as opposed to adhd symptoms) - what did the school point out as a conundrum? - what jumped out at you?
If you've written all this before then don't worry about repeating yourself - I'll look through your threads...
I watched that frank Bruno thing the other day you mentioned, really sparked an interest, so then started looking up more, but lots is just the plain diagnostic stuff - it's real experiences that are more informative...
How did the Sunday times thing come about? Take it no certain date yet?
Think what you're doing is amazing xxxx
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Post by fuzzywuzzy on Aug 14, 2013 0:07:00 GMT
Hi JJ Thank you x Well, the Sunday Times journalist actually approached me .....saw my postings on a U.S. based website.....and took me out to lunch to discuss it!! At a later date they descended upon my house...with cameraman....and chatted a bit more with me and with my daughter.......reporter is in process of interviews with a research leader who has yet to publish results of his study, so unfortunately waiting on that..... I do get the ups, it's just that they are very positive experiences....super-functioning hypomania as opposed to mania.....just have to (try) be aware of not letting it go so far that you hit point of no return....once you hit that great height only one way to go.... my daughter would be happy, then very happy, then elated, then ecstatic, then super-silly, then the mood would 'tip' over into anger or irritation or she would crash and have to sleep all day......children can cycle more rapidly and the 'high' is more prominent in younger children (for someone who knows what they're looking for) they are very similar and lots of overlap, but the two defining features of paediatric bipolar disorder are grandiosity and elation if BP adults are misdiagnosed with unipolar clinical depression and given antidepressants.....or..... children misdiagnosed with ADHD and given stimulants..... Both can change the course of the condition to rapid cycling, I.e. more than 4 episodes a year....and more severe episodes
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Post by JJ on Aug 14, 2013 0:34:47 GMT
my daughter would be happy, then very happy, then elated, then ecstatic, then super-silly, then the mood would 'tip' over into anger or irritation or she would crash and have to sleep all day......children can cycle more rapidly and the 'high' is more prominent in younger children (for someone who knows what they're looking for) they are very similar and lots of overlap, but the two defining features of paediatric bipolar disorder are grandiosity and elation if BP adults are misdiagnosed with unipolar clinical depression and given antidepressants.....or..... children misdiagnosed with ADHD and given stimulants..... Both can change the course of the condition to rapid cycling, I.e. more than 4 episodes a year....and more severe episodes For children, over what period would the happy/v happy...flip be? Assuming you say a short time, would there be a period of complete stability in between another cycle - so say a week of the cycle then 2 months of normal then a week of the cycle? When you say the high is more prominent - do you mean lasts longer or is more exaggerated in intensity? Does an episode me a high/ low cycle or a period of high on its own or a period of low on its own? When I read about grandiosity, it was about thinking you could fly for example - is it this severe in children? Hope u don't mind the 20 questions? Xx
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