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
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.