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
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.