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
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.