Shrinking Violet Report post Posted January 26, 2011 Hello all, I'm 36 and live with my parents from whom I receive no help or support whatsoever; I've tried my best to help them to understand me - I've ordered leaflets from the NAS, I've bought the Martian In The Playground book, so I've given up now. NO ONE in my family gives a ###### for a start. Mum begged and begged me to come home for Xmas from Liverpool (I'm trying to move away from here) so I did; then it was the same as every Xmas - I was completely ignored by everyone. Nobody spoke to me, everyone spoke over me, around me, behind my back - but NOT to my face. Everything was about my kid sister's wedding (to which I haven't been invited, she doesn't want me to have anything to do with it and my parents don't believe this is odd - it's her decision says my mother). Anyway, that's not what this post is about. I have another condition known as PCOS (poly-cystic ovarian syndrome) and before Xmas, I had a very heavy 10-day period. Nothing unusual there - that's the norm for me. However, 3 days AFTER Christmas, I 'came on' again; and this lasted from the 28th to about the 13th or 14th - that is NOT normal; I've had light spotting in between periods, but NEVER 2, very heavy, bleeds just days apart. I now have a long list of symptoms, which I believe may be connected to the above - or may not; everything just seems to be so random. If anyone wants me to list them in full, I will, but the main problem is that I have GAINED 1.5 stone in the month since Christmas, my belly is VERY swollen distended hard and sore, I have gone from a size 6, to I don't know what - I don;t have anything bigger than an 8, and all my 8s are FAR too tight now too. I was a 28C/30B bra before Christmas - yesterday I attempted to fit into one of my old bras (I was huge) - a 36DD - even that was on the tight side! I have severe pain in my arms, legs, ribs and the small of my back and I am PERMANENTLY exhausted - I might have to break off in a mo because typing this is crippling. My elbows, knees, feet and hands are swollen, I shake constantly, yet my blood sugar isn't low (it's on the slightly low side of normal, but it's still within normal parameters). Now here's the rub - I CANNOT GET A GP HERE!! Let me explain a little (and I'll endeavour to be brief for all our sakes!) I only learnt I was spectrum last March (I have suspected AS; I've done the EQ/AQ, just can't get a sodding diagnosis!!). I live in a small town in South Bucks - the most expensive area to live in the the UK, bar none. I have been removed from the registers of ALL local surgeries because I suffer with severe anxiety when visiting GPs (more than just 'white coat syndrome') and if they come across as aggressive or threatening then I can be rather handy with the verbals. Nearly 6 years ago, I made a formal complaint against a senior partner because she was overly abrupt rude and I found her to be very threatening. She informed the PCT that I had HIT her and she called the police; I did no such thing - I've never physically attacked anyone in my LIFE!! She's sticking to her story and other staff members at the practice appear to be corroborating it. Because of this, the PCT point-blank refuses to have anything to do with me! PALS has been useless. They assigned me to 3 practices, none of which I can get to (public transport - unreliable, infrequent and expensive public transport - is my only option) and then, this morning, they told me to call one they knew damned well I was out of area for (they have my address)! WHY are they treating me like this...?! Why lie to me...? I can't cope with all this; I'm watching my once (reasonably) fit and toned figure just sink into a mass of flab, I have zero energy, I don't sleep much because of the pain - but if I dose myself up on painkillers (which don't have much of an effect, even at the maximum dosage) then it knocks me out! I feel 'spaced out' and shaky all the time. I've never met a doctor who didn't treat me like total rubbish; at the beginning of this month I went to the GP clinic at the hospital in the next large town - the doctor wasn't interested (and became less interested when I told him I was an Aspie!) I just want a doc to listen to me, take me seriously and get me well again! I'm sick of living in my damned PJs! Sorry if this is TMI, but I've not been able to shower for nearly a fortnight, either (and I'm not the kind of Aspie who normally has problems with that kinda thing - I'm usually extremely anal about cleanliness!) There is an advocacy agency round here, but they got rid of me 4 years ago (apparently I was wasting valuable time that they could usefully - and more profitably - be spending helping others). I checked the website the other day and the same woman's still the manager, so I've not bothered contacting them again. Social services won't help me unless I'm 'labelled' (I'm NOT a damned suitcase/parcel, y'know! ) What do I do...?! Who do I have to moider to get someone to LISTEN TO ME!! I don't have access to a landline (just my mobile) so calling non-geographic numbers are out of the question... Right I've exahausted myself. Back to bed... Hugs all, Sarah xxx Quote Share this post Link to post Share on other sites
Shrinking Violet Report post Posted January 26, 2011 Anyone - please...? I'm becoming desperate... It's SO HARD to fight the f**kers when you're ill...Ben up all night in agony again. Had enough - I'd just like to know WHY I'm being treated like this... Please anybody...? I know it was long, but that's how it is with me, I'm sorry... Peace Sarah xxx Quote Share this post Link to post Share on other sites
NickyB Report post Posted January 26, 2011 Hello Sarah. Sorry that you are having such a hard time at the moment I've tried looking at the NHS patient's charter, and the only thing I can find is that the GP should refer you to the PCT and they will find an alternative GP. Thast seems to be what they have already done, although their alternatives don't seem to be of much use to you. It may be an idea to contact the Citizen's Advice Bureaux - http://www.citizensadvice.org.uk If you are in a lot of pain, would it be possible to get to hospital? I also found a charity called Verity, for women with PCOS. They are at http://www.verity-pcos.org.uk I really hope you feel better soon <'> Quote Share this post Link to post Share on other sites
Kathryn Report post Posted January 26, 2011 (edited) From what you've posted about your physical symptoms, your immediate priority is to be seen by a doctor - any doctor- and get checked out. It doesn't look as though you've got any option other than to go to one of the surgeries PALS has suggested. It may be out of the way, but if no local surgery will take you I'm not sure what else PALS can do? I'm sorry you've had such a tough time with professionals. GP's vary and some of them are certainly lacking in understanding, but regarding your own admission that you are "handy with the verbals" as a result of anxiety, you may have to think about how to manage this. If you are perceived as rude yourself, it will be difficult to build up the kind of relationship you need with a GP in order to access other services (heaven knows, it's difficult enough!). You explain your problems very clearly here: before you see the next GP could you write something to give to them to explain the anxiety you have with visiting doctors, and what might help to overcome this during an appointment? Then at least they are aware of the situation. Could you enlist your mum's help to go with you to your first appointment? Although you say she is unsupportive about exploring AS, would she help if she realised you were in physical pain? Apologies if this is a pointless suggestion as I don't know anything about your relationship with your family. As Nicky said you could go to hospital A and E if the situation is desperate and the pain is very bad. I hope you get it sorted out very soon. K x Edited January 26, 2011 by Kathryn Quote Share this post Link to post Share on other sites
Mumble Report post Posted January 26, 2011 this morning, they told me to call one they knew damned well I was out of area for (they have my address)! Maybe they're making an exception for you? It wouldn't hurt to call or write to them and explain why you are contacting them when you are outside their catchment area. I agree with Kathryn's suggestions - putting something in writing can really help - I always do this for all doctors appointments and it really helps with communication and controlling my anxiety as I don't have to worry about remembering everything I need to raise. Quote Share this post Link to post Share on other sites
Shrinking Violet Report post Posted January 26, 2011 Hello Sarah. Sorry that you are having such a hard time at the moment I've tried looking at the NHS patient's charter, and the only thing I can find is that the GP should refer you to the PCT and they will find an alternative GP. Thast seems to be what they have already done, although their alternatives don't seem to be of much use to you. It may be an idea to contact the Citizen's Advice Bureaux - http://www.citizensadvice.org.uk If you are in a lot of pain, would it be possible to get to hospital? I also found a charity called Verity, for women with PCOS. They are at http://www.verity-pcos.org.uk I really hope you feel better soon <'> Thank you Nicky, I've contacted Verity (via their messageboard) and had zero replies. It was A&E who referred me up to the GP place (sorry I keep leaving salient bits out - damm this Brian Fogg - wish he'd get the hell outta me bonce!) What I need is someone to FORCE the PCT to be more useful (it's eating which causes me the most pain) and it's that - and the exhaustion! - which makes sure I don't eat too much!) I just look at all my size 6 clothes and cry. It's the smallest I've ever been. Being slim has given me a confidence I NEVER had when I was obese (beard be damned!) and I just see a swollen bloated blob in the mirror. I know I sound like a fraud, but I'm not. I used to be fairly fit and active (not gonna be running any marathons any time soon, but I could have done a 10K). Now everything leaves me exhausted and I get out of breath walking (very slowly!) upstairs! I feel more 96 than 36! I have no-one in my corner, that's the problem. I can't seem to express frustration without having a complete meltdown (theanine does help, but only so much). I'm like a volcano; I can feel myself shaking, then I erupt. No amount of deep breathing seems to help. I'm at my wits' end. Even drew a blank with the local branch of the NAS. I'm made of Scottish granite and Yorkshire grit - I NEVER give up, but I feel like this has me down for a 10 count... This is a KO. I'm 'known' (IYSWIM) and once you're 'known', you're treated like dirt... Hugs, Sarah xxx Quote Share this post Link to post Share on other sites
Shrinking Violet Report post Posted January 26, 2011 Maybe they're making an exception for you? It wouldn't hurt to call or write to them and explain why you are contacting them when you are outside their catchment area. I agree with Kathryn's suggestions - putting something in writing can really help - I always do this for all doctors appointments and it really helps with communication and controlling my anxiety as I don't have to worry about remembering everything I need to raise. No darling, they're not - I called and the surgery told me I was out of area (they also told me that, even if I wasn't, I'd be required to present a passport or (photo) driving licence as proof of ID. I don't have either (hate flying so not going to be leaving the country and I don't drive). Oh writing, I've always done that - it's usually ignored or met with "What's this...?! I don't have time to read this!" Like I said, ALL GPs round here are s**ts. Learnt that when I had one (65 and male!) tell me "PCOS is a disorder dreamt up by fat women as an excuse not to lose weight." That WAS an occasion where I came within milliseconds of flattening a GP! I've even had shrinks give me the well-worn "You can't have an ASC - you're a girl! Stop being so melodramatic!" spiel! I'm trying to find ways over, round or under these hurdles, but I'm struggling - REALLY, REALLY struggling! I've met some wonderful characters in psychiatric prisons - one day (if I ever have the mental strength) I'll write a book... I could write 'The Good Loony Bin Guide' - though it'd be very short - and very empty! Just wish I could turn back the clock 30 years, be a boy and have gone to a state school... Oh, Mumble, do you think you could change your avatar, m'dear...? It's making me PMSL and that's not good at the mo! Hugs, Sarah xxx Quote Share this post Link to post Share on other sites
Shrinking Violet Report post Posted January 26, 2011 From what you've posted about your physical symptoms, your immediate priority is to be seen by a doctor - any doctor- and get checked out. It doesn't look as though you've got any option other than to go to one of the surgeries PALS has suggested. It may be out of the way, but if no local surgery will take you I'm not sure what else PALS can do? They won't have me. They've told me that - see my response to Mumble. I'm sorry you've had such a tough time with professionals. GP's vary and some of them are certainly lacking in understanding, but regarding your own admission that you are "handy with the verbals" as a result of anxiety, you may have to think about how to manage this. If you are perceived as rude yourself, it will be difficult to build up the kind of relationship you need with a GP in order to access other services (heaven knows, it's difficult enough!). You explain your problems very clearly here: before you see the next GP could you write something to give to them to explain the anxiety you have with visiting doctors, and what might help to overcome this during an appointment? Then at least they are aware of the situation. I have done. See my response to Nicky. I WISH I was still in Liverpool - I had a lovely GP up there, he understood me... I'm ALMOST thinking DDA - but can I prove I've been discriminated against...? The PCT won't talk to me (because of what that GP did). I need an advocate, that's the problem, but I can't get one... ARGH!! I WILL NOT BE BEATEN!! Could you enlist your mum's help to go with you to your first appointment? Although you say she is unsupportive about exploring AS, would she help if she realised you were in physical pain? Apologies if this is a pointless suggestion as I don't know anything about your relationship with your family. I did mention it in the first paragraph of my OP. I come from a family where being 'different' is frowned upon. Mother BEGGED me to come home for Xmas and then proceeded to ignore me like everyone else. She KNOWS I have problems with being sociable (as do they all) but I was talked over, round, through - NEVER to (my aunt, uncle and cousins barely acknowledged my existence). So it's not an option, I'm afraid. They'd rather I didn't exist (as my sister has told me many a time...) As Nicky said you could go to hospital A and E if the situation is desperate and the pain is very bad. I hope you get it sorted out very soon. I've done that, that's when I was told to go to the GP clinic. They've already got me down as a timewaster (was told that the first time I went). ARGH!!! Hospital's 30 mins on the bus away. You're right though, I might have no option. Just scared that I'll be treated like s**t again, that's all... It's the fatigue that's the worst (and the weight gain, obviously). Just so very, very, tired... K x Quote Share this post Link to post Share on other sites
JsMum Report post Posted January 27, 2011 Hello all, I'm 36 and live with my parents from whom I receive no help or support whatsoever; I've tried my best to help them to understand me - I've ordered leaflets from the NAS, I've bought the Martian In The Playground book, so I've given up now. NO ONE in my family gives a ###### for a start. Mum begged and begged me to come home for Xmas from Liverpool (I'm trying to move away from here) so I did; then it was the same as every Xmas - I was completely ignored by everyone. Nobody spoke to me, everyone spoke over me, around me, behind my back - but NOT to my face. Everything was about my kid sister's wedding (to which I haven't been invited, she doesn't want me to have anything to do with it and my parents don't believe this is odd - it's her decision says my mother. relate is a good organisation to get some family councilling and they support adults with AS so I would look into this organisation, it maybe how your inturpriting the situation with having autism or it could be there are social difficulties that need further support within your family. anyway recommend Relatex Anyway, that's not what this post is about. I have another condition known as PCOS (poly-cystic ovarian syndrome) and before Xmas, I had a very heavy 10-day period. Nothing unusual there - that's the norm for me. However, 3 days AFTER Christmas, I 'came on' again; and this lasted from the 28th to about the 13th or 14th - that is NOT normal; I've had light spotting in between periods, but NEVER 2, very heavy, bleeds just days apart. I now have a long list of symptoms, which I believe may be connected to the above - or may not; everything just seems to be so random. If anyone wants me to list them in full, I will, but the main problem is that I have GAINED 1.5 stone in the month since Christmas, my belly is VERY swollen distended hard and sore, I have gone from a size 6, to I don't know what - I don;t have anything bigger than an 8, and all my 8s are FAR too tight now too. I was a 28C/30B bra before Christmas - yesterday I attempted to fit into one of my old bras (I was huge) - a 36DD - even that was on the tight side! I have severe pain in my arms, legs, ribs and the small of my back and I am PERMANENTLY exhausted - I might have to break off in a mo because typing this is crippling. My elbows, knees, feet and hands are swollen, I shake constantly, yet my blood sugar isn't low (it's on the slightly low side of normal, but it's still within normal parameters). this obvously needs the attention of a Doctorx Now here's the rub - I CANNOT GET A GP HERE!! Let me explain a little (and I'll endeavour to be brief for all our sakes!) I only learnt I was spectrum last March (I have suspected AS; I've done the EQ/AQ, just can't get a sodding diagnosis!!). I live in a small town in South Bucks - the most expensive area to live in the the UK, bar none. I have been removed from the registers of ALL local surgeries because I suffer with severe anxiety when visiting GPs (more than just 'white coat syndrome') and if they come across as aggressive or threatening then I can be rather handy with the verbals. Nearly 6 years ago, I made a formal complaint against a senior partner because she was overly abrupt rude and I found her to be very threatening. She informed the PCT that I had HIT her and she called the police; I did no such thing - I've never physically attacked anyone in my LIFE!! She's sticking to her story and other staff members at the practice appear to be corroborating it. Because of this, the PCT point-blank refuses to have anything to do with me! PALS has been useless. They assigned me to 3 practices, none of which I can get to (public transport - unreliable, infrequent and expensive public transport - is my only option) and then, this morning, they told me to call one they knew damned well I was out of area for (they have my address)! WHY are they treating me like this...?! Why lie to me...? I can't cope with all this; I'm watching my once (reasonably) fit and toned figure just sink into a mass of flab, I have zero energy, I don't sleep much because of the pain - but if I dose myself up on painkillers (which don't have much of an effect, even at the maximum dosage) then it knocks me out! I feel 'spaced out' and shaky all the time. could you not request a Home visit? our out of hours organise transport for those who cant travel by public transport/afford expensive alternatives? I've never met a doctor who didn't treat me like total rubbish; at the beginning of this month I went to the GP clinic at the hospital in the next large town - the doctor wasn't interested (and became less interested when I told him I was an Aspie!) I just want a doc to listen to me, take me seriously and get me well again! I'm sick of living in my damned PJs! Sorry if this is TMI, but I've not been able to shower for nearly a fortnight, either (and I'm not the kind of Aspie who normally has problems with that kinda thing - I'm usually extremely anal about cleanliness!) There is an advocacy agency round here, but they got rid of me 4 years ago (apparently I was wasting valuable time that they could usefully - and more profitably - be spending helping others). I checked the website the other day and the same woman's still the manager, so I've not bothered contacting them again. Social services won't help me unless I'm 'labelled' (I'm NOT a damned suitcase/parcel, y'know! ) are there any other advocacy agencys, I would research other organisations to see if there is any other support from other services. What do I do...?! Who do I have to moider to get someone to LISTEN TO ME!! I don't have access to a landline (just my mobile) so calling non-geographic numbers are out of the question... you could request they ring you back due to you only having a mobile, they may do a call back service Right I've exahausted myself. Back to bed... National Autistic Society have advice helplines, ensure you are accessing the right benefits such as DLA and disability benefits this may help with your transport costs too. Hugs all, Sarah xxx Quote Share this post Link to post Share on other sites
Shrinking Violet Report post Posted January 27, 2011 JSMum, I don't see what you've done, so I can't reply to you directly (when I hit reply I only see my OP). Anyway, your points in turn (and this WILL come across as me being slightly irritated I'm afraid because - once again - I'm surviving on just 2 hours' sleep!) 1) No point in Relate. Mother would make out that I was fantasising (she's got a Master's in that) and it was all in my head... 2) There are NO other agencies - if there were, don't you think I'd have found them...?! I know damned well what there is and isn't round here (I've lived here - on and off - for the better part of 30 years!) 3) They won't speak to me at all now - PCT aren't talking to me anyway and PALS just goes straight through to an answerphone (on which I've left many a message - no one EVER calls me back!) 4) I know all about the MAS (I said about that in my reply to Nicky - I'm at my wits' end. Even drew a blank with the local branch of the NAS. Can't call their main helpline (it's an 0845 number and it always goes to a non-message-taking answer-machine anyway!) There is NOTHING round here - this is the most expensive area to live in the ENTIRE COUNTRY; it's the sort of area where celebs go if they want to hideaway and not be bothered by paps... Not name-dropping here but, in the past year, I've regularly seen in town (to speak to) Dennis Wise (he's almost emptied his latte down me a couple of times now!) Robert Lindsay (well my dad regularly sees him in the butcher's - though he won't any more as the butcher's has closed (that's the Tesco Effect, folks! ) Mr Brucie Bonus Nigel Havers (he was in panto at the local theatre) Linford 'Lunchbox' Christie (in H&B with his 5-year-old) Laura Thomas (I s'pose she doesn't exactly count as a celeb, but she lives just down the road and she's coached by Christie - or at least she was) Denise Lewis The Gallaghers used to live round here, so did Rod Stewart, at least 2 Stones - it was rumoured that the Beckhams were considering a pile here. This is where celebs come when they're washed up. Average house price is now pushing £1m, rental (for a 1-bed flat) around £650-£750pcm. I KNOW my benefits - I know I'm on the right amount (the only way I'd ever get more is if I was to leave here; then it'd be an extra £75pw). I've exhausted everything. The average age of the residents here is around 70. I wish I could convey just how USELESS it is... I. Give. Up... <'> Sarah Quote Share this post Link to post Share on other sites
