Tuesday, 27 August 2013

learning disability institution,finaly feeling some closure

several months ago we were driving past an old haunt of mine,and had asked staff if we coud stop in the car park so was able to get some photos.

at age nineteen,had been moved into a learning disability institution in manchester because mums alcohol drinking was getting worse and dad wasnt able to cope with em on his own.
a lot of people complain about LD institutions a lot but this one had been incredible,it was its own little community within a community,lots of land and trees around it which acted as sound proofing-  unfortunately the same quality coudnt be said for the staff,most of whom were severely abusive oldskool evil twats.

some years back,the UK government had decided to close all learning disability institutions down out of the belief that every one of us in the UK with learning disability [that is,the UK definition,not american/DSM,before anyone thinks am suggesting people with dyslexia,dyspraxia etc need to live in institutions] are able access community living,unfortunately in their quest to look progressive they didnt properly check that out first,many of us are unsuited to community living.
without any transitions was quickly transfered to a residential home without risk assessment and it was an absolute hell hole in terms of understanding,accomodating needs of mine and how they allowed a resident to bully all of us and get what she wants for an easy life,when em hit back at her it was em that was transfered to new residentials over and over and over to the same kind of environments; never risk assessing acording to what was told.

the institution was the first place had ever lived away from the family home,it was the first place had ever had the slightest bit of independance,it was the first place was able to say had made it,am not going to be stuck being cared for by mum and dad for the rest of life like doctors and teachers always said.

was also badly abused in there for years......there was a lot of unfinished business, never having had closure.
going there and getting the picture was some closure,it helps to look at it.
am amazed its still in the same condition,except they have fenced off what used to be the respite wing, and the ambulance bays in the car park at the front have faded away.
anyway,here it is,the view of [what was] the reception,the managers offices [at the top floor] and the respite wing-

Monday, 26 August 2013

the last chicks are ready to fly the nest

am pretty damn forgetful as anyone am known by will know,so if this sounds like de ja vous please ignore it. ;)
for the past several months have been incubating and hand rearing chicks for the mum of a fellow resident here,the chicks have a superb lineage; their daddy being a purebred light sussex with gentlemanly manners [tito] and one of the japanese cochin hens for a mother [harriet,booch and jimjims],unfortunately in june tito and two other cockerels of mine [rex and jigsaw; both japanese cochins] plus booch the cochin hen were kidnapped and the survival of their personalities and lineage have been a desperation for self.

the girls and boys of the chicube etiquete school for beautiful chicks have graduated and are now waiting for new mummy to pick them up,they shoud have gone yesterday to join the other four chick bretheren and sisteren of theirs whom em had also incubated,but hoping they will come tomorow so am able to start getting used to being without them again,they shoud have actualy gone days ago but because of all the hospital business it coudnt happen.

last night had been a terrible night, this morning when had still not slept but was lying down in bed had turned around,only to see a line of chicks perched on their brooder,chickens are as blind as a bat in the dark so they probably were unable to find their way off their perch and decided to sleep there. :P

and for the past several days,as an experiment have been taking them outside and letting them get used to the outdoors,so its not a big shock to them when they go to their new mummy,they refused to stray far and were very good chicks,but they started 'chest bumping',so now am worried that theres a lot more cockerels in the group than originaly thought-

one of the cockerels,a real gentleman just like his daddy; tito, his mum is jim jims.

am hoping to breed ducks at some point,if anyone wants chucks breeding for them so they dont have to do any hand rearing work; give a contact,but no;am not able to hand pick hens only which some people think is possible.

Sunday, 25 August 2013

hospital; the aftermath

am still getting constant spasms and regularv epileptic seizures from the whole fucked unauthorised complete codeine withdrawal,thankfuly after being back on codeine since wensday the diorreah has finaly stopped but am still feeling sick a lot, am very very weak and have to have support with picking simple things up,like a nearly empty bag of chicken feed which is very light because the weight is spread out.
arms and hands are especialy weak because in the past few weeks have had a ton of needles and canulas shoved in them-a ton of them also were failed attempts because they were trying to jam the needles into muscle instead of the vein,ems veins suck.

am feeling very very let down by the medical industry,apart from a nurse in wythenshawe hospital who prescribed oramorph when she realised was really suffering,the doctor in trafford general accident and emergencythe last consultant we saw who were able to look at it from all areas which is what a best interest decision is supposed to be about,and..NHS direct with the doctor who prescribed the anti emetic.
being honest,am feeling a huge amount of hate for the medical world,and those am known by know it takes a fucklot for em to hold grudges.

this is saturday night and unlike every other weekend am now sat at home [residential,not parents] because of the consequences of this guys fuck up and have been told by the social services safe guarding team am never going to be allowed to stay at parents house again.
it puts a lot of blame on them when have personaly only ever saw this as ems fault no one elses.

am on lorazepam at the moment to cope with being here this weekend, and have just taken the anti emetic +classic/typical anti pyschotic drug; prochlorperazine maleate [buccal version,which means dont have to swallow it and risk puking it up] so it will help with the sickness and head crap am feeling right now in terms of being here during a different decade long routine.

 all of this has caused the mental health side of em to break up again,the voice has been encouraging homicidal and suicidal acts which had been in the middle of following through but was lucky that did not have the mental or physical strength to carry them out.

am definitely going to be looking into legal action but have been told it may possibly be difficult getting this taken seriously because am classed under the learning disability [aka intelectual disability,aka limited mental capacity] spectrum and require best interest decisions.
am also going to be giving own opinion on everything that happened in the hospital from an autism and LD view to the PALS team, and also hope to offer them training on how to best accomodate us in hospitals.

Saturday, 24 August 2013

surviving hospital part two

shit has gone down,big time in the past several weeks.
since the last post on surviving hospital,a lot has happened.

last sunday was a real low point.
was feeling utterly terrible,in so much pain and torture from having been completely removed from codeine without any tapered withdrawal.
was already ill with the health issues was facing but now with the codeine withdrawal was violently sick unable to hold down food or fluid,in far worse pain than ever,suffering from severe spastic spasms all over entire body and unretractable epileptic seizures,inability to control body temperature,acute diorreah etc.

was waiting to be picked up by staff to go home,and dad had got up to answer the door to them so had seen that he forgot he left the paracetemol out of the locked safe and had took almost the entire box full [bar one sheet] .
thinking was; am in so much agony am either wanting to disapear or get something done about it.
ended up in hospital once more,they did blood tests but refused to give any medication for the pain nor withdrawal symptoms because of the ridiculous decision of this consultant to completely remove codeine,they did not want to go against his decision even though had never met him before and he had ignored the legaly binding withdrawal plan we had in place already.
luckily did not need charcoal treatment or the drug reversal agent, and was eventualy sent out, still in absolute fucking agony,but now even more mentaly unwell because of how desperate the situation was getting.

that evening had ended up being violently sick and screaming in pain,and by night time was begging for an ambulance which as people know-is something woud never do so am clearly in such distress to be asking for it,ended up being taken to the same hospital as earlier in the day but luckily it was the night shift doctors on at this time and had been given the best doctor of them all.

he went through all the scan results from the last hospital and spent a while with em going over health history; it turned out that am not actualy suffering from codeine having been eroding away at stomach/bowel; it turned out to be lifelong severe crohns disease-have got to have the old camera up arse test to confirm it, he suspected was possibly suffering from a stomach ulcer to,was given IV buscopan first,which isnt a good painkiller it is an anti spasmodic drug which works well for muscular pain;it didnt work and only made heart beat dangerously fast which hurt heart a lot and felt sicker;then codeine which because of the pain having been left for so long did not work very well,and finaly was given IV morphine with an IV anti emetic because of the nausea was suffering from.
this guy was a fucking legend am so greatful to him for listening.

was transfered to the medical assessment ward which was like a shanty town and full of old people with alzheimers,it was so noisy,awful and mainly ran by agency workers who didnt give a shit about the job,loads of vulnerable old people were just neglected,am the lucky one as have always got staff with self.
it was completely autism unfriendly and a nurse who was assigned to was very horrible and impatient despite mentioning she had a nephew with severe autism to.

 was seized up screaming in crippling pain begging for painkillers over and over,and they kept saying they will ask the doctor later and see if they change their mind about giving codeine but they dont want to at the moment because of the overdose-had not taken any codeine and the final blood test after the overdose showed no damage so the OD was no excuse,the severe bowel and digestion problems go back to baby age to;and was not taking codeine then,they were just making up excuses so they dont get legaly held responsible for prescribing it to someone who is labeled a safeguarded adult.

sister came into visit,and she was well fucked off at the state was left in,she gave the consultants a good talking to but they still did not want to override this other doctors opinion on completely stopping the codeine.
they finaly said they woud give painkillers,so was overjoyed,but then they came in the room with them; paracetemol or buscopan tablets! a choice of a tablet which is for mild pain and doesnt work for mine or a useless drug which get a dangerously fast bloody painful heart rate on.
was shouted at by the nurse for being ungrateful and making their job more difficult,felt like knocking their heads in because they didnt give a shit was in so much pain and suffering from the health issues and the withdrawal symptoms.

was about to attempt suicide one night by jumping through a window and slitting throat on the glass when the constant buzzing for a doctor finaly ended up with one coming, she like all the other doctors said she doesnt want to prescribe any form of codeine whatsoever because of dependency and not wanting to override the other consultants words,so again... was left in a state; she over heard all this when she left the room and came back,and then started to consider the circumstances of mine; ie, the impact its had on autism,mental health,behavior etc. she completely disagreed with how the consultant went about this,she said shoud never have been taken off them like that especialy as we already had a withdrawal plan in place, and although she woudnt prescribe any there and then she gave her support for going back on them providing she got to speak to the pyschiatrist and GP of mine who both came up with the plan.

was left suffering from unretractable seizures all night and she woudnt prescribe a form of vallium to stop them despite the fact am normaly semi often prescribed temazepam and lorazepam for both unretractable/status epilepsy and autism behaviors,she said she needed to get the GPs permision- all because am a safe guarded adult and have a limited mental capacity so require best interest decisions.
she said she was going to phone the pysch and gp as soon as it was work hours to get permission but she must have forgoten because the next consultant who came on shift hadnt a clue what had been said that night and said he isnt going to give his support for going back on codeine to allow for proper withdrawal nor vallium for the unstoppable seizures,was pissed off to say the least.

however,the problem seems to have been that it wasnt properly handed over to him so he wasnt aware of what was said,and after much discussion he said he woud leave the decision up to the both the pyschiatrist and the GP because am known best by them and they understand how am affected by this and circumstances involved,he wrote us up a letter to take to the gp showing his support for codeine use, and was then discharged from the hospital with the diagnosis of acute longer term gastro enteritis, but not long after getting back, was puking violently and had very bad diorreah.
the spastic spasms were ripping through entire body and was also suffering from multiple types of unretractable epilepsy.

was continuously going boiling hot one moment then freezing cold the next,was halucinating like crazy, was hurting all over due to the spasms and seizures.
it got to night time when was very suicidal and the aproaching plan for suicide was looking ever a relief, was begging to be taken to hospital again but aparently doctors had told staff that if am taken there again will not be allowed in if its because of the same problems,as they felt they coudnt do anything else with the stupid dick head consultants ban on all codeine products.
so had then begged to be taken to the pysch ward as was going to suicide if they didnt; that wasnt a threat it was just a statement becuase was so desperate and in pain.

by late night they phoned NHS direct because of the severe sickness was having and eventualy there was some light.
the doctor at first refused to prescribe any anti emetics because again.... am a safeguarded adult,but when she heard the issues that had gone on and the fact was going to suicide if did not get help [again this wasnt a threat to get own way it was just a statement of desperation] she decided to prescribe a drug,it turned out to be a life saver.
the drug is prochlorperazine maleate [buccastem M form] :
its an typical anti pyschotic which also works effectively as an anti emetic [anti vomiting] drug,its highly potent stuff and has had a great effect on mental stability,woud not be here if it wasnt for this drug.
its only for short term use am on it,am probably coming up to the last one,but its been so helpful and woud recommend it to anyone who is suffering from medication withdrawal.

the next day,the GP finaly sorted out the codeine,but because of the impact from the consultant he has only given four a day for two weeks then two a day for two weeks then none.
am going to fight it because these painkillers are all that stands between self and the agonising suicide causing pain of trigeminal neuralgia which have had since nineteen years old and to take these away without sorting the TN out once and for all woud be barbaric.

most doctors who havent been scared to speak out have said what a fuck up this consultant has made.
he has caused a huge impact on life,permenent damage.

being seen in such suffering and the suicide attempt has affected mum greatly, the suicide attempt has also landed mum and dad in trouble with social services because theyre being blamed by the social services safe guarding team for leaving the pack of paracetemol at the side whilst answering the door, theyre pensioners and dad has a crappy short term memory, not his fault.
am also never allowed to stay at home ever again because the safe guarding team say its unsafe, am devastated,have stayed at mums and dads every weekend since being moved out of the home a decade ago.

the gp has prescribed lorazepam for this weekend from friday night onwards to be able to deal with the change,very greatful for it had the first one tonight.
yesterday the pyschiatrist of mine came to visit and he also upped the respiridone and added on an extra one for the evening.

am in an absolute mess over all of this-mentaly and physicaly,am still suffering from the withdrawals and all the seizures had suffered have had a big effect on brain and body,am looking into taking legal action to.
it is incredible how litle rights those of us who are classed as safe guarded have,no one wants to do anything for us incase they do anything 'wrong'.

have lost all trust in the medical profesion-this consultant has put a level of hatred onto them that woud never have imagined having.
the only medical people that like ever again are the ld pyschiatrist and ld pyschologists of mine,the doctor in accident and emergency who saw the pain and didnt refuse to treat it,and the cousin of mine who a great hospital doctor.

Saturday, 17 August 2013

surviving hospital

weird looking bruising from one doctor trying to find a vein

 mmmm,needles,must be the only person in the world who likes watching them.

self,and a fellow spectrumer who is also staff and friend of mine,we had some fun with her tethered internet connection, am going to admit.

thursday last week, was crippled in some writhing silent agony and by night time had finaly got to the point of begging staff for help, anyone am known by knows how difficult it is to make that decision because of the huge impact it has on self and the difficulties have got with dealing with medical things/people/environments.

according to dad,around elleven o clock at night ,the GP had come out and said it was urgent had gotten to hospital,he wrote up an admission form so was able to go straight through without going into accident and emergency,was brought in in an ambulance,the paramedics were awesome and did everything they coud to try and understand and help the needs and disabilities of mine.

at some point,had had multiple tonic clonic epileptic seizures going into hospital and they had to use the hoist to lift onto the bed from the wheelchair,wish had one of these when legs are paralysed or am in seizures,people dont realise how much pressure is on arms to transfer from one level to another without support.

however,the gp had never given the paramedics the admission sheet and as a result was left painkiller free;in what was now a rather loud-head banging off the bars-kicking out at everyone writhing agony for six hours in resus,not even a paracetemol.
was so pissed off that there were tons of abusive drunks coming in getting medical treatment straight away when their problem came about from their own selfishness and foolishness.

 finaly,after six hours,was taken to the acute admissions ward and had own private room;the size was wheel chair friendly.
was still in agony,was in and out of concioucness to from the pain.
was hooked up to a IV of fluid and a vial of antibiotics day and night.
thankfuly at some point,some kind sod took pity and after realising codeine and paracetemol werent helping in the slightest,was prescribed oramorph [morphine, in a pink liquid form which they put in the syringe and shoot it into mouth].
oh dear god this was relief....it didnt get rid of it completely but was no longer wishing for suicide.

unfortunately the hospital is a teaching hospital so was constantly attracting students who see us as a criteria of symptoms and not a person being force fed their eye contact and crowding around stance.
felt like a fucking zoo animal.
they kept asking staff if its here that the problem is,jesus fucking christ on a bike how many times do they have to repeat yes why cant they go catch up with other doctors to get their answers instead of subjecting us patients to worsening pain?
this patient had run out of patience.

because of having a routine of only eating in the same place, that concept in head does not change-was not able to eat in hospital for days until the hospital had become a routine environment, up until the last few days was in hospital, was harassed everyday over and over why am refusing to eat food and how bad it is for health, having gone years without eating and getting to the point was unknowingly given the label of anorexia and was about to get a feeding tube fitted,am certainly not going to be changed by staff who didnt have a fuckign clue what autism can be like.
the special dietry needs of mine also werent taken into consideration although they said they woud be,they have no problem with halal diets because they made a point of saying this,weird how a belief is accepted as more of a priority than a need.

some of the staff were incredibly understanding and were very nice,they made it a lot easier being in hospital.the oramorph is the other thing that helped get through it to-both for the pain it finaly got rid of and the fact it removed the reality from the situation.
unfortunately [in some ways] for em, they discovered one of the main reasons was crippled with pain was codeine, the codeine had caused such severe constipation for weeks that bowel was close to bursting and it was putting a lot of pressure on bladder;there had been talk of a catheter if it carried on that way for much longer.
they removed the co codomol and oramorph and was in absolute agony,was passing out from pain again.
they gave movicol which was totaly useless then picolax,picolax is supposed to completely empty the bowel.completely and quickly.
the consultant was shocked when he came back in the evening and nothing had happened,was given another sachet of the manky stuff and by the next day that toilet got a battering again and again... and again.

it was relief when had finaly lost it,but was still in pain, they found had also had a kidney infection to.
after over a week in hospital,was released yesterday/friday night,exhausted,weak and in pain,and now have found out today the consultant has stopped all codeine products of mine completely- no withdrawal period and no alternatives given apart from paracetemol which is fucking useless and doesnt work on pain of mine and feels like an insult at minimizing what em experience.
to add insult to it all,the monthlies of mine has just started today after having been kept absent for over a month by this serious bout of constipation,yay pain.

seriously what doctor woud do this,stop an addictive product that have been on for years without any withdrawal program?
am already on a withdrawal program for it with GP, so this really takes the piss...or shit.
am only going to resort to dangerous measures to fight having it removed if he thinks am going to take having no control of own body and withdrawal easy.

so am sat here,in pain; had gone mental in hospital when the oramorph worn off and was suddenly alert and aware of the environment/situation-ended up smashing head in multiple times off the bed railings and am sporting a swolen head injury and shitty horrible monthly pains.
fuck this shit.literaly.