Ex carer now in need of one

[Waterboatman]

The pain from todays adventure is beginning to show, even through "Tramadol". Yet "Tramadol" is allowing me to post here, in this manner.

A note as to why I no longer have anything to do with "http://asperclick.com".

(The neuropsychologist who diagnosed me, made the fairly obvious statement that I am "socially isolated", as in life my writing seems to betray me. The result, I remain isolated even in these conditions, web page postings!? )


The above is also currently in my profile, for the sake of posterity, I reproduce it here, for when depressed, everything deletable is deleted!

Children can really be quite horrid, children or effective children are the main audience for "asperclick", they have as far as I am concerned FROZEN me out, it was quite obvious at times, PM's between current members with the aim of stopping each other from posting on any of the games I might be trying to participate in. The "Crayon Scribbling" after any post that I made, even in the more serious topics.
I am not quite so paranoid to think that I am the only target, "Crayon Scribbling", also happens after other "adults" postings, in a topic called "rant" where the host wanted people to be able to vent their feelings, in the relative privacy of a member only topic.
Very little point raising this with the host, she is also very young, nearly adult?

Other members who may read this and also frequent "asperclick", could you encourage the other "adults" to come here and give this site a bit more life.

And finally would you please play with me, the few games on this site. You too please Moderators.

Edited January 23, 2015 by Waterboatman

[Waterboatman]

Talking Therapy

 

A BIG thank-you to "Mihaela" and "The ExoDus" for talking to me yesterday over "BitWise IM", you both have really helped me, I feel in myself so much better, almost a different person, so different that I could listen to music for pleasure or at least while I moved my arms around for exercise.

 

Music Therapy

 

Another big thank-you goes to "AdamJ" for posting two new music videos in "Whats everyone listening to?", my feeling better from the earlier conversations, prompted me to listen, this listening to a list of short pieces in reverse order has also helped me.

 

Transformation

 

I feel that I have almost completely transformed, talking to someone who is interested and interesting is the best thing in the world to a "socially isolated" individual such as myself.

I hope the conversations will continue.

[Waterboatman]

Cast Iron Butterfly

 

I have talked too soon it seems, never mind. I am it seems, always just going to be tolerated and not desired as someone to say hello to. I have removed "BitWise IM" from the "Dock Bar" of my Apple-Mac laptop, to prevent me from using it uninvited.

I shall it seems remain "socially isolated", I have been for most of my life, so I shall carry on as before.

 

Considering these things perhaps web-site forums are not suitable places for people like me? The "socially isolated", no one wants/will talk to me, once is more than enough.

[Waterboatman]

Diagnostic Test Results 15 January 2015

 

34 AQ

13 Cambridge Behavioural Scale

25 Relative's Questionnaire

12 HADS - Anxiety

17 HADS - Depression

14 AAA Symptom score

[Waterboatman]

A note on the above

 

The first five are from forms that either I or my sister filled in, these I suppose were initial filtering forms.

The Last "AAA" is the significant result, a form filled in by the neuropsychologist at the appointment I attended with my sister who drove and accompanied me at the diagnostic interview. A very draining experience.

 

The "AAA" is the DSM-5 "Adult Asperger Assessment", its values go from 10 to 18, the lower the score the more high functioning and normal the individual is. Values less than 10 mean the individual is considered to be in the normal range for mental functioning.

 

My result of 14 is in the middle of the diagnostic range, I was on good form and not compromised by pain-killers or low blood sugar. This is also the mean result for the specification of "High Functioning Autistic" or "Aspergers syndrome" as known in DSM-IV.

 

What next?

 

This diagnoses will hopefully aid the diagnoses of my physical condition that continues to decline.

 

The local council "Adult Social Services" have been contacted, as it is now a legal requirement for them to at least attempt to help me. The local "Mental Health Services" have also been telephoned and will chase up the council, and perhaps arrange to rehouse me in more suitable accommodation.

 

I remain socially isolated, rehoming is a possible attempt to correct this, as at the moment I have no access to public transport, being to far away from bus routes in this relatively pleasant quite spot.

 

It will always be difficult for me to communicate with others, it is actually more difficult to communicate meaningfully with others on the "Aspergers Spectrum", than with supposedly normal people. In my experience it easiest to communicate with highly intelligent and social people.

 

Some attempts have been made at a meeting of minds via Skype and latterly Bitwise IM, I will not use these things again. I prefer the slower more considered pace of email and posting on this forum.

[Sally44]

I hope your diagnosis is useful in getting you some support, some social life and an appropriate place to live [if your current place is not meeting your requirements]. All in all it sounds like a hard up hill struggle. But on the positive side you are doing it and getting some results.

 

Do you get DLA or PIP? Due to diagnosis and health needs you could probably get money to buy in support so that they could take you somewhere for a beer - and hopefully the person taking you would be of an agreeable nature and someone you would like to have a beer with.

 

It is a shame how people get isolated - for all kinds of reasons.

[Waterboatman]

Sally44 unfortunately I am still waiting for PIP, application made August 2014. The "Support Group of ESA" covers my basic needs, but not sufficient for bought in support at @ £20/hr via agencies, I could just about afford three hours a month if I turned down/off my heating. But this is too few hours for the agencies that cover my area to be interested in, realistically I could do with @2 hours per week, that is simply unaffordable.

 

I have been informed by a rather round about way that I will have to wait till April and the local Councils new budget arrangements before I will get any assistance at all. Confirmation may or may not be received. Complete silence means NO.

 

I am loosing about 1KG in weight every two to three months.

Its very difficult to clean myself as I can not use the shower.

The toilet is a cheap small rubbish thing that blocks almost every time it is used.

I have complained to the housing association, and I get the usual reply, complete silence.

[Sally44]

Maybe an assessment by adult services might help as they could provide those services for help with daily living skills. If you don't want Adult Services to provide the service they are legally obliged to offer Direct Payments instead. Best to ask for as much as you can, as they always give you alot less. So maybe 4 hours a day to help with personal care, household chores, food preparation/cooking and shopping etc. Then see what they offer. They might also be able to help to rehouse you.

 

Why the hold up with PIP?

[Mihaela]

Sorry, I've been neglecting the forum for a while, due to helping out various members behind the scenes.

A BIG thank-you to "Mihaela" and "The ExoDus" for talking to me yesterday over "BitWise IM", you both have really helped me, I feel in myself so much better, almost a different person, so different that I could listen to music for pleasure or at least while I moved my arms around for exercise.

Thank you too! I really enjoyed talking to you.

I feel that I have almost completely transformed, talking to someone who is interested and interesting is the best thing in the world to a "socially isolated" individual such as myself.

I hope the conversations will continue.

That's wonderful! I like to feel that I'm not wasting my time and that I'm doing some good.

...but why this? :

 

I have talked too soon it seems, never mind. I am it seems, always just going to be tolerated and not desired as someone to say hello to. I have removed "BitWise IM" from the "Dock Bar" of my Apple-Mac laptop, to prevent me from using it uninvited.

I shall it seems remain "socially isolated", I have been for most of my life, so I shall carry on as before.

 

Whatever went wrong between those posts - posted within an hour of one another? You don't explain. So confusing

I'll reply to your later posts later

Edited January 31, 2015 by Mihaela

[Waterboatman]

My health continues to decline, albeit my mental health has improved a bit due to buying a small quality digital radio with ear-bud head-phones. I have gone from existing purely in the grey zone, to being a bit brighter due to listening to Radio-3 and Radio-4, this change took several attempts, as it was historically impossible for me to just listen to a radio, it was not tolerated unless I was driving or riding my motorcycle.

 

Its sort of surreal to listen to something beautiful on Radio-3 and have breathing/heart problems, they continue, quite painful, I do not hyperventilate, its not new, just getting worse.

 

With regard to Mihaela's post above, the upset was due to a perceived snub, I understood later that this was not intended and was purely accidental. Although sometime later it was not helped by Mihaela being "invisible" and contacting me when I just checked "Bitwise IM", a very confusing, though on reflection understandable position. It just reinforces my belief that it is impossible for me to use interactive systems such as "BItwise IM" without this sort of mishap happening again, especially with another on the spectrum. In truth it would be better to talk on the telephone. Though I suspect communication will remain purely by topic postings.

 

The good done by communicating with another has not been undone, it lead to the decision to buy a music player, which became a radio. A day-out with my sister in nearby Newbury.

[Waterboatman]

Aspergers

I was diagnosed as a "High Functioning Autistic"/"Aspergers" sufferer on the 15th of January 2015.

DSM-5 AAA score of 14 which is halfway on the scale of 10 to 18, 9 and less being normal.

Physical condition

Nothing yet on the physical side, two NHS consultants doing very similar simple things to me three months apart produced 'no diagnoses', apart from 'chronic pain'.

Simply put I am a worn out old man at 54! My skeleton can not support/cope with the actions of my muscles.

Very depressed recently as my elbows are now giving problems, this makes using a wheelchair difficult.

PIP

ATOS PIP assessment on the 16 of March 2015, will have to wait a few months for the outcome. The second of the NHS physical assessment had been in the morning. A tiring day and after a simple series of body movements requested by the ATOS assessor the last leaving me in a lot of pain and really close to collapsing, frightening the ATOS assessor and my sister who accompanied and drove me.

Pain Control

Pain control is via 'Tramadol' which is a synthetic opiate, and either 'real mud coffee' or 'chilli'. All these have their problems.

Tramadol.

Almost completely elevates my pain, I can not take a large enough dose to eliminate the pain completely as the overdose effects are very unpleasant and occur at quite low dosages, so ensuring that pills are sufficiently apart in time is important. Four and half hours apart, this is also the half life of the drug.

Constipation a serious problem, many/most service signals are 'blocked', pain really is a service message.

Impossible/difficult to sleep.

Water retention, although kidney function seems normal?

I have to stop after two days, and then sleep for a day, this allows normal functions to work again.

Real mud coffee.

Good pain relieve, half life of caffeine is six and a half hours, some care is needed to avoid overdosing, the effects of which are not pleasant. Three hours apart seems to work well.

Best results are from a cold infusion of coffee which takes a few hours to a day to brew. A 15ml scoop of ground coffee to 200ml of water in a sealable container, coffee grounds float so inverting the container during the brew helps prevent the coffee sticking to the lid.

Coffee is of course a stimulant as well as its less known effects as a pain reliever, one of its drawbacks is constipation.

Coffee will work well for a few days then rapidly loose its beneficial effects.

Chilli

Good pain relieve. Bart powdered 'Hot Chilli' a 5ml measure in something else every three hours.

Do not use with coffee as coffee stops the beneficial effects of chilli.

Chilli has its problems in these quantities, so has to be stopped after a few days. It is slightly depressing and causes appetite problems, I have put on weight, this is a problem as it makes life more difficult.

Overall

I now spend as much time as possible without pain relieve, only using one of the above when needed. This does mean that I am pretty much stuck/trapped in my bed for most of the time, getting up as infrequently as possible.

Lastly 'Occupational Therapist'

Still nothing from the council, thats even with a local NAS support worker and a local constituency caseworker prodding them, shall see if any change after the new financial year.

[Waterboatman]

Strange things that happen

 

PIP has been awarded at the standard rate for "Daily Living component" and at the enhanced rate for the "Mobility component". This news came in the letter post after I made the above posting here.

 

Stranger still, on ringing social services to inform them, and hopefully speed things up, I am eventually told (phone and computer in differing parts of the office?) that an appointment is in the post for two weeks time, (new financial year).

 

Rather a lot of excitement for one day, I shall have to rest.

[Waterboatman]

Chest pain and breathing problems

 

Something that I have had for some time, I call it the "wall" a rate of prolonged exertion that can not be exceeded, I used to be able to walk for miles at a slow speed. The "wall" is painful, having it start whilst lying down is not helpful, and can be frightening, sorry to say I have been visited by paramedics a few times.

 

As a result of the last visit by a paramedic who had the 'kit' to check my heart, I now also use morphine in the form of "Oramorph" and "Indapamide" to lower my blood pressure.

 

So when pain is bad I will use Tramadol during the day and Oramorph to sleep.

 

Visitors?

 

NAS next week and people from the council and housing association the week after, until I know what sought of support from the local council I am going to get there is not much I can do. It may be a case of me being moved into better adapted accommodation, I rather stay where I am, its quiet around here.

[trekster]

Maybe an assessment by adult services might help as they could provide those services for help with daily living skills. If you don't want Adult Services to provide the service they are legally obliged to offer Direct Payments instead. Best to ask for as much as you can, as they always give you alot less. So maybe 4 hours a day to help with personal care, household chores, food preparation/cooking and shopping etc. Then see what they offer. They might also be able to help to rehouse you.

 

Why the hold up with PIP?

 

Also you get assessed based on your income as to how much you can afford for your care package. So for me ive got to pay a small contribution a week much less than my actual income. Some of the money for carers wages will be paid by the council in your case the rest by yourself. Try emailing welfarerights@nas.org.uk for more information on self assessments.

 

Also theres webpages on the NAS website about benefits and community care. Self Directed Support is what Sally44 is referring to and I was 1 of the people who rewrote the guidance for Self Directed Support. PM me with any questions you have and I will see what I can do to answer them, if I don't know the answer I could know people who do.

 

http://www.autism.org.uk/living-with-autism/benefits-and-community-care/community-care-for-adults/community-care-self-directed-support.aspx

 

http://www.autism.org.uk/living-with-autism/benefits-and-community-care/benefit-appeals.aspx

 

Sorry if ive already asked but have you been checked for orthostatic intolerance?

 

http://en.wikipedia.org/wiki/Orthostatic_intolerance

 

Also for the pain either fibromyalgia or elhers danlos syndrome (EDS) spring to mind. I ask because EDS and fibromyalgia are common in the autistic population. Particularly the "My skeleton can not support/cope with the actions of my muscles. Very depressed recently as my elbows are now giving problems, this makes using a wheelchair difficult." Do your joints feel loose? Could you do all sorts of strange overbending movements with your joints when you were younger? Do your elbows hyperextend or your knees give way?

 

http://en.wikipedia.org/wiki/Fibromyalgia

 

http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

 

Hope im not overloading you with this information but mention to the NAS a) the problems you're having getting your physical disabilities recognized and the problems you're having getting community care including problems with mental health services. There is a NAS branch in west Berkshire contact details are below;

 

Kate Lo

Branch Officer

Tel: 07748 880725

Email: westberkshire@nas.org.uk

 

Hope you find something useful in my post.

[Waterboatman]

Hum

 

The above links viewed, a diagnoses is unlikely to ever be found, my doctor concluding that there is little point in any more visits to consultants especially if they are some distance away.

 

I have done heavy manual labour, putting on working weight quickly. I have always been flexible, one foot in the trench the other on the side, scraping and tossing out the soil with the shovel in one smooth motion.

 

If I hated the work, I just worked harder. I did a variety of heavy demanding manual work in my twenties. I even broke the crank on a bicycle, I always wanted a faster gear. My brain being used more from my late twenties onwards.

 

I stopped driving as late as mid 2012, giving away my last car. Walking became an increasing problem six months to a year later.

 

My joints and heart? have always been problematical, there was always a way around the problem. Diet does help a lot, being a vegetarian bordering on being a vegan did cause un-nessessary problems.

 

The base problem? is genetic, it shows up, with the classic flexibility in my family, though mostly without major issues.

 

Fifty onwards is a problem for everyone, our lives catch up with us with a vengeance.

[trekster]

By flexibility do you mean flexible joints? If so try the beignton and brighton scores and see what you get. Elhers Danlos syndrome type 3 and hypermobility syndrome (argued to be the same thing in lots of cases) is a genetic disorder.

 

http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Diagnosis.aspx

The Beighton score

The Beighton score consists of a series of five tests, the results of which can add up to a total of nine points.

The score is worked out as follows:

• one point if you can place your palms on the ground while standing with your legs straight
• one point for each elbow that bends backwards
• one point for each knee that bends backwards
• one point for each thumb that touches the forearm when bent backwards
• one point for each little finger that bends backwards beyond 90 degrees

If your Beighton score is four or more, it is likely that you have joint hypermobility.

The Hypermobility Syndromes Association has images of the Beighton score tests, if you would like more information.

The Brighton criteria

The Brighton criteria take into account your Beighton score, but also consider other symptoms, such as joint pain and dislocated joints, and how long you have had them. There are major and minor Brighton criteria.

Major criteria

The major Brighton criteria are:

• having a Beighton score of four or more – either now or in the past
• having joint pain for longer than three months in four or more joints

Minor criteria

The minor Brighton criteria are:

• having a Beighton score of one to three, or having a Beighton score of zero to three if you are over 50 years of age
• having joint pain for longer than three months up to three joints, back pain for longer than three months, or spondylosis (spinal arthritis) or spondylolisthesis (where a bone from the lower spine slips out of position)
• dislocation or partial dislocation of more than one joint, or the same joint more than once
• having three or more injuries to your soft tissues – such astenosynovitis (inflammation of the protective layer surrounding a tendon) or bursitis (inflammation of a fluid-filled sac in a joint)
• having particular physical characteristics called Marfanoid habitus – this includes being tall and slim and having long, slim fingers
• having abnormal skin – such as thin and stretchy skin
• having eye-related symptoms – such as droopy eyelids or short-sightedness
• having swollen and enlarged veins (varicose veins), a hernia (when an internal part of the body pushes through a weakness in the surrounding tissue wall) or – in women – pelvic organ prolapse(where the organs inside the pelvis slip down from their normal position)

According to the Brighton criteria, JHS may be diagnosed if you have:

• two major criteria
• one major criteria and two minor criteria
• four minor criteria
• two minor criteria and a close relative, such as a parent, who has been diagnosed with JHS

[Waterboatman]

Hum OK

 

Both elbows will bend backwards, the right more than the left.

With a bit of practice I can still land both palms on the floor. Before pain relieve fails.

Have just tried little fingers, left hand goes furthest, actually I can get the neighbouring finger to go a bit further, thumb is very strong and well, can brake things.

Pain is in all my joints, especially if i have tried them.

 

Joint pain is in all my wrist/ankle joints, followed by by all my knee/elbow joints, followed by all my hip/shoulder joints.

 

I played with Plasticine as a child, I have very strong hands. My flexibility is in my major joints. My nephew can do all the hand things. Mostly if it shows in our family its the major joints. My maternal grandmother could do the splits in her seventies.

 

My father was tall and thin, considering his age and upbringing. He was also flexible and strong. My mother considered "Mensa", actually both where bright, she being stronger in all ways.

 

The genetic "thing" that makes us is a double edged sword, either to success or problems. Make what of it what you can.

 

I think I score 4, I do not know how I would have scored before.

 

Major joint dislocations are my right hip and left shoulder, since time I can not remember.

Other side is less mobile and seems to be oriented differently, yet is still more mobile than others?

 

Result Tramadol and Morphine, morphine is softer.

 

Morphine is in my blood now, yet I will not sleep, its better to not sleep "with" than tramadol. I simply can not sleep with this, I am too alert!

 

I would not sleep anyway, I have two people tomorrow visiting, one from the council and one from the housing association! The "End Of The World" or "What"? They are both female, and are both likely to consider me to be a complete waste of space and time. Hardened soured females tend to have a low opinion of males. Where is the shotgun? That is for me by the way. Or them to use on me. Please.

 

Reader take heart, morphine talks here.

[Waterboatman]

Morphine still talks

I am frightened, really.

I really am bad at handling this sort of thing.

If I screw up this I could be homeless and alone.

Not the place and time to say this

but I am frightened

and

I

am alone

[Waterboatman]

Out of Morphine

it was a trail dose

Tramadol

is spiky

Slept a bit

herding thoughts

just had breakfast

feeling a bit better

still frightened

If

I

could still walk

I

would

[Mihaela]

Nice pattern. I know just what you mean by 'herding thoughts'.

[Waterboatman]

Visited

by an OT and my housing officer from Sovereign

smoke and mirrors

will anything

happen

?

I feel sick

[Waterboatman]

Sense

of

humor

has

surfaced

feeling

better

.

[Waterboatman]

Cynical me now afloat.

The "Housing Association" has put me into almost completely unmodified/unadapted bungalow and is asking the council to pay to bring it up to spec. A spec that is suitable for a disabled wheelchair user. They could get a higher rent or even sell it.

The council paid official is saying "no way", we are not paying you to improve the rental possibilities of your property.

 

I am stuck/trapped in the middle.

I

was waiting for August

yet

I

am not

going

to

pay

for

these

improvements

either

!

[trekster]

I know you are unsure about moving but if there was a different housing association which understood autism and had adaptable properties would you move there?

[Waterboatman]

I will be 55 this year, housing options that where not available or affordable before, will be possible.

So yes I would move, and quite likely will, if a suitable place can be found.

I will register my interest in moving with "Housing" possibly next week, although the coming elections will likely cause disruptions, so it maybe better to wait until the dust settles.

 

If a really good place existed somewhere else then that would be an option.

[trekster]

Good to keep your options open and house for 55+ tends to be bungalows :-)

[Waterboatman]

I am using almost all my PIP to pay for five hours of care per week from "Blue Bird Care". First session this last Thursday, leaving me in quite a lot of pain, my sister did a "Blue Badge Shopping" on the following Friday, I was already in quite a lot of pain and taking Tramadol, quite weak, I no longer care about the pain,it helps.Thats a gap of at least two weeks since my sister had seen me last.

I think now in reality, there is no point in me moving. Morphine will replace Tramadol from Tuesday. I am now largely house bound and will need aid in going anywhere. There are children playing outside, that seems to help my humour, wild flowers growing in the unkempt front lawn, birds busy in their lives.

I used to be suicidal, now that I know that I am dying I am not suicidal, funny, really is it not?

Frankly if you know me and you want to park somewhere difficult, you can use my "Blue Badge" so long as you take me with you. My wheelchair control may be a bit erratic and you may have to push.

[Waterboatman]

Still Alive

Bother

Oh well, maybe next time

Whats this?

Last Friday the paramedics were in attention again

"111"

Chest pain, really serious, certainly I was told

"if it gets worse, call 999"

result

EKG showing nothing,

"Perfect says the machine, says the paramedic"

?

Yep, they can show something is happening

But NOT that something is not happening

wonderful

?

 

Opiates used to treat pain are also stimulants, especially when used at the doses needed to just deal with pain.

The worse the pain the more of the the opiate is needed or more often, as with me, a 100 ml bottle of 10mg/5ml lasts just a day and a bit.

Silly me had a new pain, it seemed to be just a variation of the ("The Wall", my normal chest pain), I called the new pain "The Tadpole", as it was that sort of shape, its head below "The Wall" and its tail wrapping around on my left side, and sometimes my left arm, hard to tell really with everything else.

Now, I find "hospitals" a frightening prospect, and every time I decline.

A worried paramedic, saying I should have called my doctors, as it was during the day and on a Friday, yet him calling them, and finding why I called "111" and not my doctors. My regular doctor was on holiday, and the Locum prescribed another bottle, as I was using my last, (I still have not used it, the new bottle that is), the paramedic was around for quite a while, waiting for the Locum to call back, not good really.

I carried on with the morphine, until the bottle was almost empty, deciding at that point to stop, as it was not doing anything for the "The Tadpole", I had to wait about 12 hours before I could sleep, and then slept for a day and a bit.

It has taken really several days for me to recover and realise what happened.

 

The best way to deal with pain, is to try and avoid what causes it.

 

For me

Avoiding travelling in vehicles, as the vibration causes a lot of pain, so no more days out, except very locally, and if possible only as far as I can travel in my wheelchair.

Avoid unnecessary movements, I have moved my food and water next to my bed.

Though one must still get some exercise, that is my carer taking me out for a trundle, me propelling myself as much as possible, with helpful pushing on inclines.

My carer comes in 6 days a week for one hour a day. That costs all of my PIP and a large chunk of my ESA Support Group. I have to be very careful about expenditure now.

I am better, yet still a lot weaker. My power assist wheels on my wheelchair, really need the push from my carer, even on a gentle incline. The "Free Wheel" helps with ride, much softer even over what passes for roads around here. I have to use the roads, cars seem to want to live on the pavement! The road is far too dangerous a place to leave a car it seems, so they are left completely blocking the pavement! Grrrr.

 

I am in pain again, its inevitable, but I am not taking anything, morphine will just make the "The Tadpole" worse, it comes and goes, as does "The Wall", and not forgetting that drifting focus to remind me of everything else.

 

I am seeing my regular doctor next week, should be interesting.

 

 

I do not expect to ever get any support from the local council, at least one person who is currently being seen has to die, before there is any prospect of moving up the list. Thats this year, next year the budget will be yet smaller, so the "part time" OT covering the south of England, will only be able to deal with the paperwork involved with removing people from the list who have died waiting.

 

Humour is at least with me, I have called the "Tadpole" "Kermit", when "Kermit" grows up, I will croak.

[trekster]

Sally44 unfortunately I am still waiting for PIP, application made August 2014. The "Support Group of ESA" covers my basic needs, but not sufficient for bought in support at @ £20/hr via agencies, I could just about afford three hours a month if I turned down/off my heating. But this is too few hours for the agencies that cover my area to be interested in, realistically I could do with @2 hours per week, that is simply unaffordable.

 

I have been informed by a rather round about way that I will have to wait till April and the local Councils new budget arrangements before I will get any assistance at all. Confirmation may or may not be received. Complete silence means NO.

 

I am loosing about 1KG in weight every two to three months.

Its very difficult to clean myself as I can not use the shower.

The toilet is a cheap small rubbish thing that blocks almost every time it is used.

I have complained to the housing association, and I get the usual reply, complete silence.

Can't you get a financial assessment to see how much you can afford to pay for care? Chase up the new budget arrangements as it's nearly June.

[Livelife]

I've read through the posts here and would also like to add that The forum Asperclick in my experience at least makes you feel vulnerable and unprotected from the behaviour of others.

Your not allowed to express an opinion as others get upset very easily and as it's mostly young people it resembles a school playground rather than a serious forum for debate and help with genuine concerns about Autism.

It may be suitable for many people and they are very happy how it functions but personally it wouldn't recommend it for adults it needs to focus on children and games and there arena lot of petty arguments between young adults there, not a place if your after debate and serious conversations with other adult members.

[Waterboatman]

Triggered

21 Days Later

 

On Wednesday 27 May 2015, my doctor caused me by her words and actions to make me, make a serious attempt at my own life, an overdose Tramadol 120 x 50mg capsules and a packet of Codeine. I thought the stuff in that quantity was lethal, wrong at least for me.

The visible scars have largely healed, thats from the extreme itchy dance or involuntary movements that lasted for a day or so, 72 hours later most effects were over, smelled like a pharmacy, blood on the sheets.

The following Tuesday I informed the Practice Manager of what had happened. A senior doctor in the practice was supposed to call later that day. Its been complete silence from them since, I am not sure I want to ever see these people ever again.

 

 

Yesterday ventured out accompanied by my carer, the first time since that day 21 days before.

[trekster]

Have you made an official complaint against the Dr who triggered you so badly? You can see a different Dr or can change practice.

 

Hope your venture out with the carer was beneficial for you. As someone whose been suicidal in the past i can empathise and hope

you find some better mental health support soon.

[Livelife]

 

Triggered

21 Days Later

On Wednesday 27 May 2015, my doctor caused me by her words and actions to make me, make a serious attempt at my own life, an overdose Tramadol 120 x 50mg capsules and a packet of Codeine. I thought the stuff in that quantity was lethal, wrong at least for me.

The visible scars have largely healed, thats from the extreme itchy dance or involuntary movements that lasted for a day or so, 72 hours later most effects were over, smelled like a pharmacy, blood on the sheets.

The following Tuesday I informed the Practice Manager of what had happened. A senior doctor in the practice was supposed to call later that day. Its been complete silence from them since, I am not sure I want to ever see these people ever again.

 

 

Yesterday ventured out accompanied by my carer, the first time since that day 21 days before.

I'm so sorry to hear of your experience I'm glad your ok and dealing with this awful experience you had at the doctors.

I can empathise with the fact of how some doctors treat you, the point was made that i only wish to see a doctor who has experience in either the field of mental health or Autism.

One doctor said to me oh that's common in people like you didn't listen to me was not interested wrote me a sick note and said not to see him again see my usual doctor.

I now have an arrangement where if there are no appointments available to see my doctor to inform the receptionist to contact my doctor to ring me back. If she can't deal with it over the phone because I'm not too good on the phone she will make sure I can see her but in most cases a phone call is all that was needed.

If you can find a nice doctor explain the situation then maybe they could offer a similar service, I know that things are not always that easy but I think I'm trying to say there are good doctors who really do want to help and not to give up because of a particularly bad Doctor your worth a lot more and a caring doctor will see that I am sure.

[Waterboatman]

I have changed my carers.

The last changed my hours with out telling me

better fortune?

[Livelife]

That's good to hear you have made changes that will hopefully suit your needs better than the original arrangements did.

[Waterboatman]

I am still around, less mobile and in poorer heath.

Eating is difficult.

I am now ensuring

that

I

consume

enough

animal based fats

BUTTER

Other things that help

are

Ceylon Cinnamon

 

[Waterboatman]

I have had to stop taking cinnamon as I have reached its toxic dose levels.

It has been difficult, its obvious liver damage.

Recovering by taking just butter!

Its too soon to say if my liver will recover again.

What do I do for pain?

I am starting to do those things I would not of thought of.

[trekster]

See a different gp to the one that saw you and ask for a referral to a pain clinic to help you manage your pain. There is also TENS machines.

[Waterboatman]

Still around

the housing association

is now looking

for

suitable accommodation

fot me.

Hoping that that to council area

that I move to

does not

have

an

official

DISCRIMINATION

policy

I

am

taking

cinnamon again

with

coffee

and

large amounts

of alcohol

I

am

weaker yet angry

my day in court

to

expose

these pretenders

at

providing care

[Waterboatman]

Calmer, yet the words have been spoken, they have been heard, I made the correct speech "If I could afford to sue you, I would not need your services", they know full well I mean it. Seen a senior person Monday, a high ranking social worker told someone outside my bungalow that the they had two weeks holiday followed by a six month sabbatical, the day after. Heads rolling?