Published on 12, July, 2020
Hello all,
I realise this board's not 'live' yet, but it's the only place I have I can post.
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 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.
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' 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!
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.
What do I do...?!
Right I've exahausted myself. Back to bed...
Hugs all,
Sarah xxx
Just read the post, one thing did jump to mind at some of the symptoms but the others told me no. Have you managed to see someone yet? Even an emergency doctor?
How you doing ? SV
Is there any one there ? SV you ok yet ? did any one give good advise you got a lot of on liners wondering if you are ok.
Hope people being here is making a difference for the better !
Take care SV
Shrinking Violet - can you cheat?! The NHS is exactly that - a National health service. Is there a friend or family member you can visit who's surgery you can then attend as a visitor and get seen by a GP at their surgery, just as anyone would if they became ill on holiday?
Or, if you are really in a lot of pain (and it sounds like you are) can you just go to A&E?
Hello SV the irony of your name is not lost in the teapot comment and the urgency of NOW as it would seeem in need of a hand hold.
NaHHHHHHHHHHH !!!!!!!!! Why would any self respecting, Injured, betrayed, hurt, Isolated ASD individual Reach out and ............... take anything with ease. So, What are the things you need to be in place for anyone to get your attention and be able to offer a slim chance of sucess on the, willing to help front.
I'm Guesssssing that wild and feral with a touch of Rambo would understate the vigilance that you have when it comes to keeping yourself safe and "those offers of help"
Not a good place to be. "Much confusion you have young Jedi"
Do you need the help or would clearing the wood from the trees help ?
The weight and fatigue thing ? A good peice of advice someone gave me years ago translates in to many different situations.
"If you are jumping at shadows and things that go bump in the night, it is more likely to have a natural explanation than a supernatural one."
The deal with any advise is, if the details get missed and the result is naff there is a culture of blame !!!!!!!!!!! going on in our society. As we pass through this adolessant phase in our cultural life, the ASD need for clarity sinks a bit in the mix.
If the scales tell the story of a good feast at Xmas as many a scale and belt will do then the lungs and heart will complain at the extra work load. Adrenalin will shake rattle and roll if the effort and demand to move has not changed with extra loading on the body system.
Did you cover the subject of periods, a real mixed bag of opinnion for many and the girlfriend chat route will not help. Biology books from the library or a dictionary surf and a swing past the medical references can give a nuts and bolts look at the subject to stop you driving youself nuts with not knowing stuff.
Sorry your family was not on the same page, Bummer! What have you made of the poo ? have you started growing roses of your own making yet, turning the bad stuff into good can be all you got.
Doctors ! Don't be too hard on them. Its a real car crash to spend a decade learning and caring for people to find out there was a whole bunch of people and stuff the big guys missed out of the corriculum. We don't pull any punches are not shy too often when provoked and we are obvious if you care to look. Their version of betrayal has a career of guilty misses. Our betrayal too. But we get to be doctors without the riggors of the endless lectures.
Upset at chocolate teapots ? Don't use them for hot stuff. Save for hormonal moments inneed of Zinc replenishment.
This poem is for you and called
"The Shrinking Violet"
In the whirl wind of desperation, when the anger and accrimony is spent.
There is the aggonising and resounding silence of painful truth. When this is the place you stop to rest, begin not again. But look up, with every act. Choose !
When able take your first step a new. Faltering, afraid new step, no one need know except your soul-yourself.
If the past is not to be repeated then a new path must be trod. The asail of fear and terror, betrayal and foul is already known. Why not then, these thing; on new terms. On free terms, on your terms.
Tread carefully lest it be, you are the one who violates the journey of another.
Journey well ! WB
The best medicine, help, friend and care is in everyones mind, their own.
We're sorry the links above weren't more helpful for you Sarah, After checking there's a few things we can suggest that might help you get the support that you need. You can contact the helpline by email on autismhelpline@nas.org.uk There is a 14 working day response time but you can be certain they'd reply about your situation, so please consider that as an alternative way to get in touch if the telephone hasn't worked previously. The NAS also runs a Community care service. This is based on appointments that are arranged either by telephone (through the helpline) or by email. The following page explains the service, the ways to get in touch and includes the contact email: http://www.autism.org.uk/Our-services/Advice-and-information-services/Community-care-service.aspx We have information on our website about the complaints procedures for NHS services. You may have already tried some or all of these options but it may be worth reading to see if it suggests anything that hasn't been suggested to you before now: http://www.autism.org.uk/living-with-autism/benefits-and-community-care/care-and-benefits-for-parents-and-carers/care-services-complaints-and-remedies-england.aspx As your experience with the local advocacy service hasn't been very helpful for you, you might want to look at our information about advocacy services to see if that could help you find an alternative. Please take a look at the following article if you want and see if the links at the end are helpful: http://www.autism.org.uk/our-services/support-for-people-with-autism/advocacy-and-autism.aspx A community care assessment may also be able to look into further support for you. You can see more information about an assessment on the following page: http://www.autism.org.uk/living-with-autism/benefits-and-community-care/care-and-benefits-for-adults-with-an-asd/community-care.aspx Whilst the information above will hopefully be helpful, if you are experiencing an immediate health issue then you should go to your local walk-in centre to see if they can help. We realise your experience with the NHS hasn't been helpful so far but that is the best route for immediate medical attention. Good luck, we all hope you find the support you need to improve the situation you're in right now.
Sorry Jim, but no
I'm feeling in a bad mood tonight - in pain. So you're a chocolate teapot, I'm afraid.
Sarah
Hi Shrinking Violet,
I'm sorry to hear about the situation you've found yourself in.
Other users may be able to offer their experiences of similar situations and advice but as we aren't a crisis service I'd like to offer some numbers you that may be able to help. I'll also see if the Helpline would have any further advice for you tomorrow.
If you like to call the Autism Helpline provided by the NAS, they may be able to offer advice and local or national services that could help you.
The helpline is available from 10 - 4 on weekdays, on 0845 070 4004. Whilst the telephone may not be an easy way to communicate, it may be something you'd want to consider trying.
It might be worth contacting NHS Direct, rather than speaking to your local health service, who could offer a different perspective and support finding a local service that can help.
They are available on 0845 4647
As you've found your local PALS service to be unhelpful, I wonder if it may be worthwhile contacting your Primary Care Trust directly to see if they can help deal with the problem and discuss finding an appropriate doctor locally. NHS Choices offers a local service finder on the internet here:
http://www.nhs.uk/ServiceDirectories/Pages/ServiceSearchAdditional.aspx?SearchType=PCT&ServiceType=Trust
I realise your local advocacy group wasn't a positive experience in the past but I'd suggest trying them again. It may be that they are more helpful this time, even if they are still managed by the same woman.
Verity is a UK charity and self help group run for and by women with PCOS. In addition to any support you find here you may want to see what help they can offer, perhaps through their discussion board initially. You can visit their website here:
http://www.verity-pcos.org.uk
If you'd like to talk in general about your situation with someone who can listen and offer support then you could call Supportline. A service for any adult dealing with any issue they are available on 01708 765200, though their opening times vary so call for more details.
I hope that some of these services are able to help. In the meantime, hopefully other members of the Community will be able to share any experiences that they've had that may be able to help you.