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Post by furiousfrog on Feb 9, 2014 20:23:08 GMT
Yep, procrastination is underrated and just the most horrible thing. If there was just one symptom I could have permanently removed it would be this one. I think furiousfrog said they'd just had their IFR refused - doesn't sound very promising does it? Annie has sent me the leaflet on how to appeal their decision should the answer be negative, but like she said, the CCG have given themselves a lot of wriggle room. I'm kind of hoping, because I just won't let this go, they might give me the funding just to shut me up. It wouldn't though! Hey there, Am so, so sorry to hear you're going through a rough time but keep at it. I just keep phoning the commissioners and asking them loads and loads of questions that I know they can't answer - basically, I've been depending on the "Oh for god's sake, give it to her so she leaves us alone" method of motivation too. In a way, adhd helps because the phone calling pattern I follow is utterly random so they never seemed to expect them (or avoid them!). I know the depression gets overwhelming too but try to stay angry rather than hopeless if you can? The additude magazine has some pretty good suggestions for helping with procrastination although I've found that the psych's / counsellors and GP's I've spoken to have no idea just how painful it is. They seem to think that we're sitting there going "Lalala, I don't care that I'm not doing this thing" and one of my daughter's psych's was a bit surprised when I told her that the mental self-flagellation that you put yourself through in order to force yourself to achieve the tiniest thing is infinitely tougher than just doing the thing itself - but it's still not enough to get your head round doing it! Seriously, though - I've actually started using "moaning at the local council" as a method of therapy when I get really overwhelmed. Ask for deadlines, ask them if they know any support for helping you cope in the meantime, ask what your options are if it is refused, what they consider impairment or, my favourite method, is to start explaining in excruciating detail about the noise and chaos in my head and if they can imagine what it's like to live with that and whether they have any suggestions on how to deal with it. I use the analogy of sitting in a room with talk-radio on, a fascinating TV programme turned up loud, a brass-band going past the window, helicopters overhead and several people talking to you with several conversations all at the same time. And while that's all going on, you're trying to listen to the quietest person telling you something really boring but you desperately need to hear it because it's incredibly important. If you're lucky enough to get someone with imagination, they'll actually get stressed as you tell them. Just... don't give up. That's what they're hoping you'll do. Otherwise, try one of the advocacy agencies - I've had some great help from these guys: www.actionforadvocacy.org.uk/contactServlet?action=display&contact=2849&borough=45 www.actionforadvocacy.org.uk/articleServlet?action=list&articletype=73or maybe these people can help? www.voiceability.org/nhscomplaintsadvocacy.org/I'll be thinking of you and hope you see a way forward very soon. Angela
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Post by furiousfrog on Feb 9, 2014 19:47:57 GMT
Aww, thanks you guys. *Now* I remember why I used to come here so much! JJ - To be honest, I became really concerned about my daughter's anxiety and so wound up and frustrated that I was calling every few days and constantly demanding answers that they didn't have. I genuinely think that the only way to get anything done is to make the lives of the decision-makers as stressful and frustrating as ours are normally. It angers me beyond my ability to express it that the route to treatment is virtually unnavigable by those who have the greatest need of it. PP - Good thinking, batman! I'd forgotten ADDISS, despite joining them about a month ago. Will give them a go tomorrow. Don't know how I feel about the local paper though - I'm self-employed with my clients in the local area. I've had a couple of conversations with clients when they say "I've never met anyone like you before" (but not in a sexy way... ) <- (hah, big chin emoticon!) and when I've mentioned ADHD, their work requirements seem to suddenly shrink. >:-( it seems incredible that there is simply no provision at all, yet they are asking for service users to take part in the consultation. ummm... how can you have service users when there are no services?! ContraryMary (love the handle btw) - it's mad, isn't it? I think they're including anyone who's had any mental health treatment or support. As you quite rightly point out - how can we review something that doesn't exist? Essentially, it's been implied that they needs feedback on how the lack of treatment has affected people. I actually had a conversation with one of the commissioning board where I asked if Milton Keynes were planning to follow NICE guidelines for ADHD provision. She said firstly that they were guidelines, not regulations so they didn't *have* to follow anything based on the requirement in the area. I asked what that meant and was told "You appear to be the only person in the local area with this who needs treatment so I don't think there's as much need for it as you seem to." I asked her what the procedure for adults seeking diagnosis in MK was, for them to make that calculation. I got told that "Well, there isn't a specifc one, really." At this point, I said that I'd literally been diagnosed by accident when my GP got fed up trying to persuade me I was depressed and sent me to IAPT (for CBT). The therapist there had one session with me and said "I don't know what the issue is but it's not depression and it's not something we're equipped to deal with. He referred me to a psychiatrist in ASTI (adult short term intervention) with an "interest" in ADHD, who gave me an "official" diagnosis. I then got told "Well, that does sound frustrating, but as I said - you're the only person we're aware of with diagnosed adult adhd. (Which I seriously doubted, but still...) At this, I lost my temper and asked that, if there was no diagnostic services for Adult ADHD, then how could they possibly know that no-one needed treatment?? I did start wondering if I was the one who had cognitive issues!
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Post by furiousfrog on Feb 8, 2014 17:43:58 GMT
Saw my psych today and I am now on respiridone as well as strattera so let's see how that helps these damned mood swings x I really do feel for you. Not the same cause but I've been getting huge mood swings with symptom rebound on my meds and they are just exhausting - you end up wanting to run away from the noise inside your own head. It sounds utterly gruelling, I really hope that the respiridone gives you some respite and an upwards turn. Please do update on how you get on and my thoughts are with you.
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Post by furiousfrog on Feb 8, 2014 17:32:47 GMT
Nightmare, spok - my sympathies! Can't you get it swapped for generic mph if it's going to be that difficult to get any? Sent from my GT-N7100 using proboards Not seen you here for a while - How you getting on with things furiousfrog? Xxxxx Oh no - I am SO sorry JJ, how rude of me!! It's been a bit... well, not great, really. Am really sorry I posted and ran but have been embroiled in lots of arguments with my pct (well, CCG now) and have just had IFR for treatment refused. :/ How are you getting on? Hopefully you've been good? Feel like I'm about to spend my evening catching up on the last 2 years here!
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Post by furiousfrog on Feb 8, 2014 17:20:07 GMT
Hey all, Sorry to come back after a year like this, but I have some news from the faraway land of Milton Keynes regarding Mental Health Services provision and a request to muster support if possible. Short ADHD version: There's a consultation looking at mental health provision. We DESPERATELY need voices and feedback on the proposed 2014-17 Mental Health Strategy. If you live in MK, know anyone who does, or have a specific interest in this, go here and fill in the online form www.milton-keynes.gov.uk/consultations/Consultation/302... ... Good grief, are you still here? Well, if you're hyperfocussing (or just want more information) let me tell you about my recent experiences and why it's essential that we respond to this consultation. I've struggled badly over the last 12-18 months after being let down by my PCT. Milton Keynes has no provision or treatment plans for adults with mental health issues other than depression, phobias or major psychoses. After a diagnosis that took >10years to reach, I was offered medication titrated and reviewed by my GP who has never stopped reminding me that "he has no idea what he's doing with it" and is not happy managing it. After experiencing both positive results but also real problems (huge rebound symptoms, concomitant depression and tachycardia) I asked for a different preparation with a longer half-life and a more gradual wear-off. My GP agreed with the request but would not manage this himself. We've since been told that no-one is available to me with the expertise to review my medication. Quite literally, my only course of action is to take it or leave it. In addition, my daughter is approaching transition to adult services after being diagnosed 18 months ago. Again, she has no adult treatment or support to look forward to, despite not even having titration completed. She suffers from severe anxiety and has been comprehensively let down by the education system who felt that at 15/16, she didn't represent enough of an economic investment for them to bother statementing (despite a direct request from her psychiatrist). This story will not surprise anyone who has sought treatment for ADHD, OCD or any autistic spectrum disorders in Milton Keynes. Not only do they not have any guidelines or procedures for treatment of adult and young adult adhd, they do not even have a defined procedure for mental health individual funding requests. For over a year, my GP and I have been applying in various different ways for specific treatment. Now, after being sent to 4 different departments and going through 6 or 7 individual requests and form filling exercises, I've just had my request refused. Oddly enough, this may actually be a very good thing. During the course of these applications, I've made a vast nuisance of myself by constantly phoning, emailing and generally harassing commissioners, consultants and various service managers. Finally, when I was told my request was refused, the new commissioner said it's become evident that there is not enough support for people in my (or my daughter's) position. Therefore, they are investigating the possibility of providing services including disorder-specific CBT and tertiary services to supervise medication reactions and titration before referral back to GP services. Last week, I was informed that they've released the Mental Health Strategy proposal for 2014-2017 and it specifically mentions ADHD. They're holding a public consultation from 30th Jan until 28th March to seek the views of the service users in MK and we need as many people as possible to get involved. This link here: www.milton-keynes.gov.uk/consultations/Consultation/302Takes you to the page where you can read the strategy and also you can fill out an online form giving your opinion of the existing service and the proposed changes. If you like in MK, (or know someone who does) please do make your voice heard. As long as you're resident in MK or have been a service user there, or a professional in the field, your opinion is incredibly important. Please - have a look at the link and fill out the online form to yourself heard. Hopefully, we can get something done that addresses the shocking lack of support for mental health disorders in the area. If you've got some time and you want to get involved, PM me. I'm hoping to meet the commissioner in the near future and will update shortly. Assuming you're still with me - thank you for reading all of this and please do visit this link: www.milton-keynes.gov.uk/consultations/Consultation/302
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Post by furiousfrog on Aug 6, 2013 21:07:13 GMT
Nightmare, spok - my sympathies! Can't you get it swapped for generic mph if it's going to be that difficult to get any?
Sent from my GT-N7100 using proboards
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Post by furiousfrog on Jun 21, 2013 11:38:05 GMT
Dunno if this helps, but my daughter came up with a good one when talking to the school senco. She said her thoughts were like someone slowly shuffling a pack of cards. She might get a thought she really needed to concentrate on, but it'd just go and get lost in the middle of the pack with the shuffling and she'd have to wait for it to come back round again because all the others were in the front of her head needing to be thought about.
...Or maybe I just played too much crib with her as a child?
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Post by furiousfrog on Jun 6, 2013 11:08:25 GMT
Surely (involuntary) selective attention is THE primary symptom?! Don't understand what she's saying tbh - my daughters ADHD inattentive and I kept getting told she was anxious. Was so proud of her when in one session she burst out saying: "but I wouldn't BE this anxious if I could just get stuff done".
Personally, I think anxiety is a byproduct of something else that gives you stress - I mean, it's not bloody idiopathic for god's sake - it's CAUSED by something! Is there anyone you can take to advocate for you?
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Post by furiousfrog on Jun 6, 2013 8:23:28 GMT
Politicians are generally all out for themselves. I dislike them all. Some more than others. I would especially like to throw a pointy flapjack at Michael Gove. I'd cut him with a sharpened noodle, certainly. Did you see this?
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Post by furiousfrog on Jun 6, 2013 8:19:00 GMT
+1 to what Janev's said. You can do it, you're clearly a strong person who's managed to deal with all the crap life's throwing at you and you've got a bit more crap to get through but you've done it before and you can do it again. Avoiding the feelings by not doing the actions will get you in a downward spiral where you don't want to move in case you get the bad thoughts back.
If you don't do it and find yourself in the same position in a couple of years time, you'll have to jump through the same hoops again then. Might as well get it over now and get to a better place earlier rather than later.
I'm really rooting for you - sounds like you've had a rough ride and I think most of us can identify with that. Even if others don't realise it, we know how hard it is and we also know how strong you have to be to keep plugging on but it gets easier the further you go.
Thoughts are with you.
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Post by furiousfrog on Jun 5, 2013 22:03:27 GMT
Not worth it at all if you don't do it! But how much worse will you feel sitting at home telling yourself that you made the right decision? I know it's hard (believe me - someone here talked me into an appointment I thought was a big waste of time and I'm so glad they did) but you have to jump through the hoops they hold up for you.
You might feel bad after the appointment, but at least it'll be another step over and closer to getting the help you need. Unfortunately counselling and cbt is painful by it's nature but think of it as a drawing pain, it's leaching out the poison!
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Post by furiousfrog on Jun 4, 2013 8:41:18 GMT
Good luck for today! Am hoping you'll come back and tell us how it wasn't as bad as you thought and you did really well!
xx
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Post by furiousfrog on Jun 4, 2013 8:38:46 GMT
I just thought I would let you know that I am up early and ready for work for the second day in a row!! So those pills must be doing something as this in unheard of. My line manager asked if I'd shit the bed when I got to work yesterday all smart, awake and early!! have a good day everyone!! xHeh - I'd only heard that saying a couple of months ago when I turned up to an appointment with a client on time - didn't know whether to be offended as it sounds so.... icky. Am really glad you're finding your feet a bit. Is this the same dose you were on that you're starting to feel better with?
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Post by furiousfrog on Jun 4, 2013 8:36:12 GMT
400+ calls? Bloody hell, that's determination. You deserve a prize for that. I wonder how many NTs would be that persistent? Thank God he was in when you got through! Imagine if he'd popped out for lunch? Good luck with your appointment. Will keep my fingers tightly crossed for you. If you get nervous, just turn the stone 3 times and we'll be with you in spirit. Absolutely! I'll be thinking of you today - hope everything goes well!
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Post by furiousfrog on Jun 3, 2013 18:58:08 GMT
Well done you! If you've got high A's on the coursework, then you obviously know your stuff. Try not to panic! Does a big cup of coffee help you concentrate at all? Otherwise, when you have problems concentrating, put your paper aside for a minute and look out the window and try to think of something else, then come back to it. I'm sure you'll be fine after you've put all this work in - the exam's just formalising it! Even if you do blow the exam, you'll still come out with a B (after you've managed to ace coursework making up 60% of it, the way grade boundaries are set you could get away without virtually answering anything and still get a C !). Not that you will blow it but knowing that may take some of the pressure off? Just go in there and (I know it sounds mad, but) try to enjoy it! Will be keeping fingers crossed for you - let us know how you get on tomorrow.
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Post by furiousfrog on Jun 3, 2013 16:16:21 GMT
Thanks Kathymel, I know I was astonished. I took OH in with me and we were both ready for a fight - certainly didn't expect to come out with a prescription!
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Post by furiousfrog on Jun 3, 2013 11:50:35 GMT
Glad to hear your report came through and you're feeling better and fingers crossed you can get stuff done quickly. You're well and truly on your way!
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Post by furiousfrog on Jun 3, 2013 10:56:14 GMT
furiousfrog I'm sorry your journey to treatment has been so difficult. Your GP's an idiot (I can just about understand not wanting to prescribe stimulant meds but not prescribing atomoxetine either because "its clear you are just depressed" when every more specialised professional they send you to thinks you have ADHD is just arrogant and incompetent on their part). Why can't you just change your GP? Phone up a few surgeries and sound them out about ADHD, then when you find one that is happy to prescribe switch over. Do you mind me asking what area you live in? I need to add it to my areas to avoid living in list. Hey Spok, Good to hear from you and I completely forgot to thank you for what you said last time I was going through this. (Btw - I live in Milton Keynes, apparently the provision for this here is very bad according to psych and GP.) Anyway, I'm actually feeling a little bit bad right now. Had GP appointment this morning to discuss next steps and out of the blue, he's prescribed! He's very nervous about prescribing it, particularly as the psych didn't give him any dose and titration information and he said he's really quite concerned about the side-effects of methylphenidate, but I've been given 10mg XL for a couple of weeks and will then go up. He wants to take titration very slowly as, being new to it, he wants to monitor effects at each step of the way, which I can understand. In the meantime, he's said I should really have professional monitoring of the medication and general issues with adhd so he'll prescribe until I can get a referral to a clinic. He's going to find out if Milton Keynes have a service contract with any other areas for adult adhd, otherwise he'll have to do a special request for an out of area referral. I do feel a bit bad now - my GP kind of palmed this off on another GP in the surgery and was a real pain about it, but the new GP was quite good this morning and he made an effort to go through the decision making process and why they'd been hesitant. Anyway, fingers crossed I can get referred to a specialist clinic but, regardless, feel like things are starting to happen!
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Post by furiousfrog on May 28, 2013 10:35:36 GMT
Hey guys, thanks for the moral support last week, it was much needed! Anyway, update came after psych called oh again when we asked some of these questions. He said that their service is for short term crisis support and they're not allowed to titrate but only offer initial crisis management medication for up to 14 days then referral to GP or tertiary service. One good thing came out of it - I'm not paranoid! Psych told us the gp surgery said they won't prescribe mph or dex and are "extremely unhappy" about prescribing atomoxetine and won't do that without explicit written permission from pct.
Apparently, they told him that in their opinion this is all pretty much superfluous - they said I've been going there intermittently about the same complaint for the last 13 years but its clear I'm just depressed but as I won't take antidepressants again, they've been unable to help me. (Even though ive always maintained im not depressed, its on my record that i'm a chronic sufferer). When they referred me to Iapt for CBT and the therapist told them he wanted them to refer me for ADHD diagnosis they wouldn't even do it then and were unhappy when he decided to do it directly (apparently, as a ologist instad of an iatrist he's not really supposed to?)
So, lessons are learnt. Psych told us to ask GP to refer us out of area to ADHD clinic in either Northampton, Cambridge or Oxfordshire. Said he'll write a report backing up the necessity of this (am concerned about GP actually going ahead with this otherwise) and, sooner or later, new gp.
Kind of angry that they've stitched me up like this and portrayed me as a hysterical depressive but at least I know I wasn't being paranoid!! think I'll visit the out of area referral post and get all this started.
Thanks again to everyone that helped!
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Post by furiousfrog on May 24, 2013 14:43:03 GMT
can you imagine even having to think about contacting your CCG to get insulin for example? ? My mum's got high blood pressure and not once did she have to look up NICE guidelines to get her medication..... Xxxx I didn't even think of it this way, but it's a good analogy! We're supposed to report it to dvla etc, so they clearly consider it something that needs managing but obviously nhs isn't the same. Having the report in your hand will mean a lot too - you've got something concrete to batter people with. (figuratively, not literally!!)
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Post by furiousfrog on May 24, 2013 13:13:42 GMT
Am so pleased you're getting there. Go cautiously though, it can still take a little bit longer (as I've found out) so don't hang your hopes on a quick resolution, just be glad that the light at the end of the tunnel is coming steadily closer!
Having said that, I really , really hope that everything goes smoothly for you! Hopefully your son's just going through a phase but if you do think he has it, try to get him assessed early. The older a child gets, the harder dx is. Fingers crossed for you both!
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Post by furiousfrog on May 24, 2013 13:09:12 GMT
I'd like to discuss this, but it would derail us here. New thread? Definitely. I have concerns about this sort of thing too, so would be good to discuss.
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Post by furiousfrog on May 24, 2013 13:08:16 GMT
Lol some good comments all round I think DEFO looking into CBT xx Fingers crossed you get it sorted and get to where you want to be. Keep us updated on how you get on!
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Post by furiousfrog on May 24, 2013 8:57:14 GMT
He's said something very similar I think, although if you can find his routine on nct classes you should definitely watch it if you want to cheer yourself up! Notlonely - merseyside, eh? I'd definitely look at CBT via IAPT. This site appears to offer cbt locally to you and it looks like you can self-refer without going through the bloody gp. www.selfhelpservices.org.uk/our-services/
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Post by furiousfrog on May 24, 2013 8:35:22 GMT
Hey there,
Not to start anything, but what you're going through is awful - everyone here understands the frustration and being overwhelmed with everything. The break might be good for you but I'm concerned that your OH is directing his anger at the wrong person.
It's too easy to be polite and not get anyone's back up but if he loves you (and he clearly does) then he should be phoning up and giving your psych stick until something gets sorted out. They have a tendency to dismiss women as hysterical (I've had this mentioned to me more than once) and having your OH saying "No, there IS a problem - it's not just depression and she needs help" might be more powerful to Drs than you sitting there on your own saying the same thing.
I understand he's tired and frustrated and fed up with your inconsistencies. I've had this conversation with my OH, but ultimately, they're in a better place to deal with the red tape, endless meetings and paperwork because he doesn't have the same barriers that you do.
How would it be if you asked him to help you? Say you can't do it alone and the idea of being a partnership is that you look out for each other. I'm sure there's times you've supported him through bad times, surely it's not too much to ask that he does the same now, when you desperately need that support - not just leave you to deal with it as soon as things get too hard.
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Post by furiousfrog on May 24, 2013 8:20:00 GMT
I love Tim Minchin! (Look up "storm Tim minchin" on you tube) Dammit, you found my source! I was hoping to look clever.. I must admit, I've found their website and I keep thinking I'll call them. Just haven't managed to get round to it yet(story of my life!) Notlonely... whereabouts are you?
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Post by furiousfrog on May 24, 2013 7:43:46 GMT
Thanks again Annie - this really helps. Am going to get away from it this weekend I think, and will start raising a stink next week. The things you've mentioned are really good too - I'll be sure to work it around those points too.
I can't thank you, JJ, kathymel and notlonely enough for the kind words. I was so upset yesterday it was really good to have some support!
(heh - sorry notlonely, that reads like you're not lonely enough!)
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Post by furiousfrog on May 23, 2013 19:30:09 GMT
I'm so sorry, it's not a great time to feel like that. CBT is definitely a good one to look into. See if you can get your GP to refer you to iapt (http://www.iapt.nhs.uk) - I had to wait a couple of months for the sessions to start, but I don't think I'd have got through the crap I've had just recently without them.
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Post by furiousfrog on May 23, 2013 18:42:44 GMT
Hmm, sounds like woo to me. You know what they call alternative medicine that's been studied, classified and empirically proven to work? Medicine.
What is it you want to fix?
ETA: on reflection, that sounded quite rude - my apologies. I have no problem with the idea of placebos but I tend to prefer practical things to do - CBT really helped me and if it's done well will get you really involved in improving beyond the sessions and would be a far better use of your money, imo.
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Post by furiousfrog on May 23, 2013 18:32:22 GMT
Thanks Annie. OH called psychiatrist's office earlier as he's been a bit concerned about me today and they've told him they've discharged me now and there's nothing they can do.
Back to square one, really. Can't express just how disappointed I am with it though. I've been dismissed by GPs and counsellors for virtually all my adult life. But for the last 6 months there's been light at the end of the tunnel and in the last 3 months it's been "almost there", "just round the corner", "just one more week!" and then I can start getting my life sorted out.
I kind of feel like that's all been snatched away from me now and I've got to start again with my GP. All this time, and I thought he was helpful, just didn't really know what to do but now I've found out that he's more than capable of finding out how to stall it and avoid having to do anything about it.
Am having trouble turning my head off tonight but hopefully tomorrow will be brighter. Thanks for the kind words, they've really helped.
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