Ex carer now in need of one

[Waterboatman]

Life is a circle, for me quite empty and with no focus, my days are completely empty.

A carer myself up to nearly five years ago, for my mother. Now I need one.

Nearly fifteen years ago I worked in the computer industry.

Now being what I am means I have no friends of any description, family do not really want to know, I have some support when they feel like it, and then none when my life really gets bad.

Its not as bad now? At least I have a reasonably quite place to live, have most of my costs met, and will know soon if they will be completely covered.

I was retired, but being what I am, that which I had was easy pickings for the circling vultures, such pleasant people when you have money. Now a bit more than pennies, though not much more.

I know I am not unique, there are only so many throws of the genetic dice.

 

[Laddo]

Hi and welcome to the forum. Do you mind telling us why you need a carer now? I read your profile and from what you said you seem to be having very negative thoughts just because you're waiting to be diagnosed as Aspergers? Or is there something else?

[Waterboatman]

"Laddo" Your new here yourself, my profile is quite complete.

From being a very strong individual, capable of lifting another, to a wreck that can not bare its own weight.

All my joints are affected. Do I really need to say more than that?

Aspergers is a diagnoses I would not otherwise bother with, its a diagnoses and as such means extra benefit, something a increasing disabled body with no other current diagnoses, needs.

Don't get old, life was never fun, this however is far from fun.

[Mihaela]

Welcome, Waterboatman!

 

Life is a circle, for me quite empty and with no focus, my days are completely empty.

Why are your days empty? Don't you have any special interests? I have so many that I wish I could give some away!

A carer myself up to nearly five years ago, for my mother. Now I need one.

I know what that's like. Like you, I was my mother's carer - although she was pretty capable until her death in 2012 at age 93, she still needed with help around the house and garden. Now I find it's me who needs support, for my parents had supported all my life.

Nearly fifteen years ago I worked in the computer industry.

I last worked for money in 1976. I had to give up due to the stress caused by other people. I've done loads of voluntary work since then.

Now being what I am means I have no friends of any description, family do not really want to know, I have some support when they feel like it, and then none when my life really gets bad.

But it shouldn't mean that! I have a few friends (a result of voluntary work), but I don't get the practical support I need from them, although I get moral support which is so important. Like you, I sense that the family don't want to know, although I keep in touch with two of my cousins.

Its not as bad now? At least I have a reasonably quite place to live, have most of my costs met, and will know soon if they will be completely covered.

I live in a quiet place, but have no idea whether I have enough money to live off, so I've become very frugal, to such an extent that I'm at risk from anaemia and have been prescribed folic acid.

I was retired, but being what I am, that which I had was easy pickings for the circling vultures, such pleasant people when you have money. Now a bit more than pennies, though not much more.

I retired in 1976, and since my parents died I too have become a victim of 'circling vultures' - who latched onto me as 'friends' - especially because I have no understanding of large amounts of money. (To me 'large' is anything more than 20 pounds or so).
I know I am not unique, there are only so many throws of the genetic dice.

No, you're not alone, and it's reassuring in a sad kind of way, to know that I'm not alone either.

[Waterboatman]

Mihaela I am a single focus type, whatever I do is my interest. I am better at doing things for other people than myself. Better at making tools than the final thing.

I am good with money, if it's not mine!

I watchef my mother go from a very intelligent "Mensa type" with good memory to just a shadow of her former self.

[Laddo]

I'm sorry Waterboatman, my original post may have come across as quite callous. I didn't mean it to seem that way. I can relate to you in that I'm better at doing things for other people than myself. For me, I come last

[Waterboatman]

I have been largely trapped in my bungalow due to my declining condition and not being able to get my wheelchair outside on my own. The council are out of cash so can't help even though I have told by the 'money' that I qualify. The housing association will not do anything without an 'OT' from the council. Result nothing is going to happen for a very long time.

AAARGH, enough, bought ramps, waiting for the last to be delivered, courier is 'Yodel' someone somewhere has been playing games with the delivery. Now my drivers car is off the road and the folding ramp I ordered is horribly awkward and largely unusable, trying to save money I bought the economy version, would have been cheaper to go straight for the 'premier' version. Now somehow I have to find the money to buy it.

I am on basic ESA after a year, I survived ATOS, but most likely will have to wait for my PIP assessment before getting any more money.

My brain between depressions and being clobbered by a new pain killer, is sought of useable, would love to use it, my hands are largely stuffed as well, so typing can be interesting.

 

I shall try in future to leave a ranting here, and avoid getting into pointless arguments.

 

For the record, I am a third and final generation vegetarian, not a convert. I do not support the theory behind vegetarianism, and do not support veganism either. Where specific extreme diet standards apply, the local populations have 'evolved' to support the diet. It is not wise for the general population of these isles to have anything other than a broad unlimited varied diet. Those afflicted with ASD may or may not have compromised digestions, so must be careful not to exclude important sources of essential fatty acids.

I am almost of the mind that vegetarian promotors should be hung. Enough damage has been done.

[Mihaela]

I'm sorry to hear about the trouble you're having. There must very many of us in similar situations. The 'system' is heartless and hypocritical. If we had true communities in this country, we'd help those of our neighbours who needed it - as people still do in many parts of the world. Modern British 'values' are killing off altruism and community spirit in favour of an "I'm-alright-Jack" attitude.

 

For the record, I am a third and final generation vegetarian, not a convert. I do not support the theory behind vegetarianism, and do not support veganism either. Where specific extreme diet standards apply, the local populations have 'evolved' to support the diet. It is not wise for the general population of these isles to have anything other than a broad unlimited varied diet. Those afflicted with ASD may or may not have compromised digestions, so must be careful not to exclude important sources of essential fatty acids.

I am almost of the mind that vegetarian promotors should be hung. Enough damage has been done.

We're all entitled to our opinions, but to have value they need be more than mere statements. I could just as blithely claim the opposite of what you claim, but it would be worthless without supporting it with verifiable facts. I'll listen to carefully reasoned and informed opinions, but mere unsupported assertions get us nowhere. Your dismissive approach in that other post can hardly be called serious debate. I welcome intelligent debate on any subject, but opinions are just that - opinions - and will remain so. Suggesting that those who disagree with our opinions (whether informed or not) should be hung is utterly ridiculous - but quite disturbing too. (By the way, I'm strongly opposed to hanging - an opinion based on much thought and studying of ethics and criminology).

Having said all this, I'm still open to learning about how you came to hold this opinion. Especially evidence for this:

Where specific extreme diet standards apply, the local populations have 'evolved' to support the diet.

 

...and this:

It is not wise for the general population of these isles to have anything other than a broad unlimited varied diet.

I've never heard any such claim made before. However, your following statement sounds reasonable and makes sense. I presume you're talking about Omega-3 and Omega-6 and the virtually inabilty in males to produce long-chain fatty acids from short-chains.

 

 

Edited November 4, 2014 by Mihaela

[Waterboatman]

Milhaela the best that I can say, is that I do not need to prove anything, vegetarianism is a recent invention and all its supporting data is written by the same 'fluffy' type people who came up with it in the first place.

You are a convert to it, albeit when you where young, its about the same age as my grand mothers conversion, she had the sense to ensure that her children had fish in their diet, so not so extreme.

Otherwise shall we agree to disagree. I see no point in pursuing this further.

[Laddo]

The 'support' people with disabilities are given by the government is shockingly bad. They say they need to make cuts and take people who need benefits off of them, and then what? They decide to rename most benefits every few years at the cost of millions of taxpayers' money! They scapegoat the poor and the disabled as the reason the economy is a complete wreck but in reality it is all their admin nightmares and general cluenessless at the top that is ruining things for everyone

[dotmarsdotcom]

hi waterboat,

 

I've only just come across this conversational thread....so hope you don't mind if i chip in.

 

i hope it's okay to you, and other posters, if i relate to your original post, since I've only just got here.

 

(i'm not ignoring what everyone else has said.. but since you own this thread, it's only fair as a new comer to it, i address your original stuff?)

 

so going by the letter of your original post,

 

i feel for you buddy.

 

like you say your experience is not uncommon.

 

i know plenty of autistic people who when times are rolling for them, everyone hoops on board to ride the wave,

 

but when times are not so "rolling" any longer, let us say "the door bell don't ring no more?"

 

welcome to the world of dealing with NT's. alleged "human beans".

 

but.. that is what they do!

 

what i find is... it's best to realize that is what they do. and then get over it. they aren't going to change.

 

you once had loads of cash, and they milked you. then you didn't and they dropped you?

 

even your family who you trusted?

 

welcome to the real world. it's a pretty cruel horrible place having to deal with "normal" people when we are as we are eh?

 

just so you know, normal people take, take, take until there's nothing left, then spit you aside, and move on to the next person they can take off.

 

smell the coffee and roses and move on from it. <hugs>

 

do we want to be like them? no way!

 

find people like yourself, who feel and are like you. you'll be happier.

 

find people who take you for what you are, and don't need to see the color of your wallet to like you.

 

all the best mate. X

[Waterboatman]

Thanks dotmarsdotcom for your posting, a breath of clear air through the above 'rantings'.

I am in a upswing, my life is like that, I shall feel more able for a few days. Then down again, what will fail next?

With little money life is simpler, one does not have much. Its quite around where I reside apart from hearing the parrot next door swearing all the time, the walls are thin. Never mind.

 

I used to live on a boat, a really bad mistake, trying to have somewhere to live and money left to live on, I only recently reluctantly applied for benefits, at the time of buying the boat my live expectancy was not very long.

 

'Normal Types' have their uses, really is this a real definition, I never use it myself. I do however classify people into a variety of types not very consistently, i forget quite quickly, I have never recorded these definitions. But in short people vary quite a lot, many types and fusions of types, ASD being a very wide spectrum, with people who may or may not be part of it.

[Laddo]

Waterboatman, why are you being so hostile towards myself and Mihaela? We have both tried to give you some support in our previous posts but you have dismissed them as rantings. We are not having a go at you - please understand that

[Waterboatman]

Laddo I am not hostile, just annoyed. I do not like people going on about vegetarianism its a stupid compromise between having a broad unlimited diet and being a 'vegan'.

 

I have been a vegan, its really quite a boring way to eat, I was young, I saw vegetarianism for what it is. I have never been a member of the 'fluffy bunny' brigade, but for a time I was very 'Buddhist'. So there you have it, a reason.

 

Laddo I would rather you did not become a complete vegetarian, largely as I am is I think ok. All life has its value, who can say wether a tree has a soul or not. So living true to life is the best way forward.

[Laddo]

People have the right to talk about vegetarianism if they want. It's up to them, not anyone else. Saying they should be hung is incredibly harsh and quite insulting to me considering my brother, stepmother and father are all vegetarians. Just because someone has a different opinion to yours does not mean they are horrible people.

[Waterboatman]

Laddo I keep forgetting that I am communicating with people on the autistic spectrum.

Honestly wether people are vegetarian or not is just an accident of history and really matters not a great deal so long as their health is satisfactory. All that really matters is that they get all their physical requirements from their diet, including supplements as necessary.

Promoting vegetarianism is another thing, and remain firmly apposed to it. If you have buddhist leanings, its simple you become a vegan.

A good diet rich in all you need, means that you function in all aspects better than you would otherwise.

Poor diet will exaggerate any brain malfunction, including depression. I know very well about that.

[Mihaela]

Thanks, Laddo

I'm sorry Waterboatman, but your comments do appear hostile, unreasonable and quite uncalled for. I don't know any other aspies who behave like this. You ignored my requests for evidence of your assertions, so I can only assume that you have none. You also ignore the very reason that I am vegetarian - namely, that I don't agree with harming and causing suffering to sentient beings.

"Milhaela the best that I can say, is that I do not need to prove anything"

Oh yes you do, that's if you're making claims that others question. If that truly is your 'best', then I'm not impressed; it's hardly supporting your assertions is it? I can only assume that you're in denial and can't even provide the basic evidence to support them - otherwise you would surely do so.

vegetarianism is a recent invention and all its supporting data is written by the same 'fluffy' type people who came up with it in the first place.

Absolutely false!! I've studied the history of vegetarianism in depth, and in Europe it goes at least as far back as the Greek philosophers. The Cathars of France practised it, so does Buddhism, Jainism, Hinduism, etc. It has a long and distinguished ancestry. As for the 'fluffy' types, if you mean irrational New Age type thinking I have nothing to do with it. I'm talking about serious peer-reviewed anthropological, scientific and medical research, as well as serious philosophical and ethical debate.

You are a convert to it, albeit when you where young, its about the same age as my grand mothers conversion, she had the sense to eat fish...

Please don't compare it to a religion, it is a moral stance. I SIMPLY CARE FOR ANIMALS, and you sidetrack this crucial issue. By saying your grandmother had the 'sense' to eat fish, what on earth do you mean by 'sense'? ...Or is it just your opinion.

I see no point in pursuing this further.

...and it's so obvious why - for you can't provide any rational justification for your weak claims.

I do not like people going on about vegetarianism

That's pretty obvious too, you clearly have a bee in your bonnet about it. Whether you like it or not is irrelevant. I don't like people going on about eating dead animals. It's a pretty disgusting habit, in my opinion - but so what? Opinions are irrelevant - unlike facts.

its a stupid compromise between having a broad unlimited diet and being a 'vegan'.

Stupid? You're not making sense. Maybe I'm a bit thick...

 

I have been a vegan, its really quite a boring way to eat

Boring? How sad! In my experience it's exciting and we eat a far greater range of food that the average (unimaginative) meat-eater.

I was young, I saw vegetarianism for what it is.

Did you really? Maybe that's where you made your big mistake.

I have never been a member of the 'fluffy bunny' brigade, but for a time I was very 'Buddhist'.

I'm not a follower of any fashion, group, 'brigade' or religion - never have been. I value and cultivate my independent thinking and reasoning.

 

All life has its value, who can say wether a tree has a soul or not. So living true to life is the best way forward.

 

If you had read my earlier post you'd have noticed me quoting that old chestnut used by meat-eaters trying to justify their habit: "But plants may feel pain". You've virtually said the said the same thing - but in a metaphysical sense - thus proving my point. Actually, I'm more interested in sentience than 'souls' - 'fluffiness' in the extreme. Pain is felt by all sentient beings, and this requires a developed nervous system. Trees lack nervous systems. As for having 'souls' you'd better ask God, for that little matter lies in the realm of religious speculation.

I too live 'true to life'; my philosophy is simple: goodness, truth and beauty (the transcendental triad). Ultimately, nothing else matters. "Each transcends the limitations of place and time, and is rooted in being. The transcendentals are not contingent upon cultural diversity, religious doctrine, or personal ideologies, but are the objective properties of all that exists... where there is truth, there is beauty and goodness also" I prefer to call it the existential triad.

 

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

No offence intended, but you really do need to educate yourself a little more. Please gracefully accept that you're not well informed on this subject, and try to keep any inflammatory opinions to yourself in future. If you wish to pursue this discussion do your homework first - for your own sake.

 

 

 

Edited November 5, 2014 by Mihaela

[Mihaela]

PS - Waterboatman, I see you made a another post just before mine - a far more sensible one, but still not all that reasonable. I'll try to explain what I mean:

Laddo I keep forgetting that I am communicating with people on the autistic spectrum.

This is surely irrelevant. It shouldn't matter whether we're on the spectrum or not. We should all treat other as we would wish to be treated ourselves - in this case by sensible, polite, reasoned discussion.

Honestly wether people are vegetarian or not is just an accident of history and really matters not a great deal so long as their health is satisfactory. All that really matters is that they get all their physical requirements from their diet, including supplements as necessary.

Very true, but I'll add another little proviso: as long as animals don't suffer in the process.

Promoting vegetarianism is another thing, and remain firmly apposed to it.

This sounds an extremist approach to me. Are you opposed to freedom of speech and expression? I could equally say that I was 'firmly opposed' to the promotion of the eating of dead animals. It would only be my opinion, and therefore worthless.

If you have buddhist leanings, its simple you become a vegan.

Or if you simply have a strong empathy for suffering - which is central to Buddhism, isn't it? 'Ahimsa'?

A good diet rich in all you need, means that you function in all aspects better than you would otherwise.

Poor diet will exaggerate any brain malfunction, including depression. I know very well about that.

 

Yes, yes, YES! I'm so glad we agree on something.

 

[Waterboatman]

Mihaela you and Laddo are worrying. Both of you have eating problems, I do not care what you eat, just eat more of it. I am really worried about Laddo he may be eating less than he has stated. You can not live for long on so little. I know, I have been down that path.

Eating little or nothing is the way out from existence in not so distant future.

The administrators of this site do not gather personal information, it may be an omission.

[Laddo]

It's true that I don't eat much. I honestly don't have the appetite for food most of the time due to the stress of trying to stay afloat in this NT world as I'm sure you have experienced when you worked. I'm not trying to say that my situation is any worse than anyone else's, but that is just one of the ways my body deals with stress. It's very unhealthy, I know, but unfortunately I will probably continue to have poor appetite until I find a job that demands less socialising. Thank you for your concern though, I do appreciate it. You don't need to worry about me though, you have enough to worry about as it is! I do hope things do improve for you Waterboatman. Hopefully the DWP will pull their thumbs out and give you a bit more money to live on

[Waterboatman]

If no appetite then its possible to live on either of the "cow & gate infant formula's" the one with the "teddy bear" or the one with the "bunny rabbit", one is the normal the other is vegan. I have and still use it to keep me healthy. Its normally easer to drink than eat. You can mix it with anything, apple juice, beer is interesting, so is port wine.

As for stress, eating better should help you cope better, I know stress is a great appetite killer. The approach I use is to break my meal times into 5 rather than 3, it means all are smaller and hence easier to consume, also when only eating still very little its possible to feel better. First is at 06:00 then 09:00,12:00,15:00 and finally 18:00. I live by the times of the sun, maximising the amount of day light. If you shift your hours thus, mornings are quite, in summer you have the cool of the morning. Wildlife is easer to see.

Work is hard to get, impossible in my condition, and I became unwanted once I hit 45. I do not have a massive problem with people, just so long as there are not very many of them. I know of no approach other than avoidance as far as socialising goes, I was forced 'a condition of employment' to go to the companies Xmas party, they got very drunk, I stayed on coffee as did one other. We both left in our own cars at a sensible time.

[Mihaela]

Very good advice, Waterboatman. I ate very well until my mum died. Made ambitious meals, and she liked cooking for me too. I tried to keep this up after she died. At first I lost my appetite but gradually improved. I'd spend my usual amount of money on food. Then all the trouble with solicitors and council started. My stress levels shot up. I realised I had bad executive function (I'd never heard of that term until then) and so I began spending as little as possible on anything. That's when my eating got seriously worse. Now that I've a warning from my GP I'm slowly beginning to eat better, by spending more, and I've even done a little cooking in the past couple of weeks. Tomorrow I'll go out and visit the greengrocery stall at the market. Oops! That reminds me, I must take my folic acid tablet! (I'm very forgetful)

Work is hard to get, impossible in my condition, and I became unwanted once I hit 45.

I last worked for money in 1976, and soon realised that I could never keep up a 5-day a week job. The social aspect of work put me right off. I also get bored very quickly, but never when I'm alone absorbed in my special interests. If I'd had a diagnosis long ago, I'd have realised that I could have managed part time work with animals or children. Instead, I happily lived off about 20 pounds a week for decades.. (I was a children's gymnastics coach and judge for 20 years - and I needed to be fit for that, and I was! About 12hrs/week but unpaid). I could never be self-employed for I've no interest in making money, and couldn't handle the money side of things.

I do not have a massive problem with people, just so long as there are not very many of them. I know of no approach other than avoidance as far as socialising goes.

Same here. Not very many and not for more than a hour or two. I find it easier getting with Aspies, especially if we have common interests. (I have so many, that it's often easy to find common ground even with those who have few interests).

I was forced 'a condition of employment' to go to the companies Xmas party, they got very drunk.

 

Aaaargh!

[Laddo]

I think both of you are quite amazing people. You have both been through a lot yet you still find reasons to keep going which is very admirable. You're both quite inspiring. I wish I was in a position to help you both out in some way or another, even if it's just tidying the house or something, but sadly due to my location this would be difficult.

 

It is very sad that you once you reached 45 you were unwanted in the working world, Waterboatman. It's yet another factor of the unfairness of society. It's very worrying that certain groups become 'invisible' like that. We really need to get the narcissists out of power and start putting some people who actually have empathy in charge of running this country. It's a shame that I am only 23 years old and already totally disillusioned with society and politics, but unfortunately I think this is the case for 90% of my generation.

 

I too have poor executive function, Mihaela. I lived away from my parents for two years at university and more at a flat with my brother (who I am almost certain has Asperger's too) and on both occasions usually forgot to eat, spent all my money almost as soon as I received it and achieved very little. It's depressing. It did not help that although I was diagnosed with Asperger's when I was 7 or 8, I had no useful support and didn't even understand the condition until very recently. My mother did not bother to tell me anything or give me anything to read about the condition and led me to believe that Asperger's was little more than being 'crazy' (I had a lot of behavioural difficulties when I was a child - not helped by my ADHD in the slightest!).

 

I am the same as you both are with other people - I do not mind a few, but too many and I start to get stressed. Unfortunately this makes getting a job nigh-on impossible as 95% of jobs seem to require excellent social and communication skills. The job market has become focused on the ability to chat for long periods of time over actual ability in a job. It's ridiculous.

[Waterboatman]

Hum, "Laddo", I have been through a lot of interviews, granted I only truly succeeded three times. But those three account for nearly eighteen years. It may also help that I was interviewed and hired by directors of small companies directly, not 'Human Resources'. Also computer types were accepted at being a bit strange, it goes with the territory. It helps to be presentable, I asked once why I failed, my hair in long a very long ponytail, it was short after that for nearly thirty years, its long again. As I have said before, I have spent my life as merely a slightly eccentric person, I suspect 'Mihaela' has done the same. Before 'Aspergers' people were eccentric. To be honest I think I prefer eccentric over ASD.

I also note the job market is very tough for graduates, my brother in law is a recruitment consultant so I have had the unvarnished truth on that. Its very tough for graduates with very good degrees. Its a buyers market, they want the degree and experience, no one is taking the risk of training. I paid for mine, one that made sense for where I wanted to go. One must make what one can of what is available. Forget ASD and all its branch's.

Poor "executive functions", making a mess, an increasing mess, an insurmountable mess, meltdown. I think it may a common feature amongst the people frequenting this site. If one is not sure about what ever one is doing, then disaster looms.

[Laddo]

I can usually do okay in interviews - I've passed four out of six - but it's actually getting the interviews these days that is the issue. The job market has become absolutely brutal these days and the advice the government keeps churning out on how to get a job is useless information designed by people who have always been in work who have no idea how much things have changed. I see smooth-talking businesspeople giving 'tips' on how to succeed in the workplace but often what gets them their jobs is the gift of spin. You can't get a job if you're under-qualified and you can't get a job if you're over-qualified. For example, McDonald's won't hire me as I have been to university but as I didn't complete my degree or have any NVQs, I am struggling to get a job anywhere requiring a bit more skill. The best way to succeed these days is to know exactly what you want to do for a career from a very early age but unfortunately a huge amount of young people don't have a clue what they want to do because they are so disillusioned with the inequality of today's world. Short of a revolution I can't see how things are going to improve.

[Waterboatman]

Laddo when I have been refused I have had very similar reasons, if any came. I thought you needed a first class honours degree to toss whatever at McDonalds.

Overqualified is used when they can not think of any other 'correct' response, its normally a lie. With me it would be really 'you are too old'. Is any mention made of your diagnoses? If so then that is the real reason.

If one is not want is wanted by the employer, and one gets through to the interview, then some lie that will not get them in trouble is needed to say why they do not want one.

As for learning anything that will help with the future, its best that you find it easy and fun, that way you will be good at it, distance courses may be an option, if it ends with a C&G or NVQ or whatever all the better.

I have C&G Cobol and C&G electrical 'something', thats it apart form three O'Levels, Maths.Physics & Chemistry. Times were different, then everything got outsourced. AARGH.

[Waterboatman]

The ramps I need to get out of my bungalow have finally turned up. Thats good, slight problem to be truly useable I need to stick them down in place. That will have to wait until my sister and her husband are prepared to help. Mean time I can get out by moving one of the lighter ramps about. Three ramps are needed to get out, and that does not include the kerb!

Encouraging a couple of others on this site to eat more, has prompted myself to eat more. Problem I have gone overweight at 74.5kg and I am 1.9m of a formally large build. What do I mean, surely I am underweight, well I have a degenerative joint condition, meaning my joints have trouble supporting my weight, my weight limit has dropped over the last year from about 85kg to about 72kg now. I have no formal diagnoses for either of my conditions, Aspergers or my joint condition. Result is I am on basic ESA with no assistance for my physical needs. So if I go overweight I am very restricted in my movements and what I can do. I do have a wheelchair. Its just that I have to stand to transfer from bed to chair, from chair to toilet, and to use the shower. The bungalow is not adapted for a wheelchair user.

Sorry but the pain from knees just hit me. I know I have done damage. No food for a few days and strict calorie controlled diet after that to keep me below 72kg. At 69kg I can actually walk 30 feet.

If I was a dog or cat and was taken to the vet, I would be put down. Just wish that was real option for humans.

[Laddo]

You should really go and see someone about your joints Waterboatman. If you get a formal diagnosis you might be able to get more ESA and financial support for your mobility needs. You might be able to get a carer to assist you as well

[Waterboatman]

Trying to get a diagnoses started last year, rheumatology 2nd attempt in about a month, different hospital and a consultant this time and not a junior doctor. It has not helped that even with being quite thoroughly toasted by X-ray and quite drained of blood, nothing much was found. They are not going to use expensive kit on a useless individual like me, especially if they do not believe me. My sister only recently came to believe me. So what can I expect of a non specialist who has not seen "what ever I have" before? Diagnoses for difficult conditions like mine can take quite a few years. In the mean time, no diagnoses equals minimal ESA. I have been through the weeding out of ESA claimants 'who can work' by ATOS, saved by one of my other conditions, that does not need a diagnoses, odd that. I can not be expected to work with it, but I still won't get any more money to cope with it! I have to buy my own supplies, not available on the NHS. So minimal ESA is a struggle, my limited savings are going down to meet the short fall.

I have applied for PIP, I would expect to get the full mobility component, except I do not expect I will get an appointment for quite some time. Me thinks the money side is governed by a simple rule, if they can strip money off you, act fast, otherwise if its more money for you, try and stall for as long as possible, the claimant might die in the mean time.

Edited November 6, 2014 by Waterboatman

[trekster]

I have locked this thread as it is getting out of hand please respect other people's opinions on here.

[matzoball]

After review the thread has been re-opened. Please be respectful of each others opinions - we're all on the same side here

[Waterboatman]

Thank you "matzoball". I stormed off leaving as little as I could, deleting everything possible.

 

Everyone here is most likely on the fragile side, like a cast iron butterfly, very strong yet prone to shatter.

 

I am only back as I am now a user of the much maligned NAS website, and clicked on one of the affiliates bringing this site into focus.

 

Personal update. Been through the much feared ATOS and now classified as "Support Group" for ESA. Thats me most likely "blacking out" a few times, the doctor preferring to talk to my sister "my driver", and being the wreck that I am in my wheelchair.

 

A note: should this be moved now to somewhere else?

[matzoball]

We're all here to support each other, might not get along sometimes - but at the end of the day we're all human

 

It's up to you if you want the thread moved Waterboatman - it was your first post as a greeting to the forum but if you want it moved let us know

[Waterboatman]

Going through the mill again.

I expect a quite a few a few of you have experienced, have gone through a similar process.

Fresh diagnoses, no progress, a clinician, a consultant doctor no less, puzzled, struggling.

The ASD aspergic spectrum throws up individuals like myself, puzzling, how could we such powerful intellects function, work in a real environment for decades? Answer with tolerance from others.

I am angry at the moment, no pain,

NO POLITICS.

[Mihaela]

Sorry to hear this.

It's high they time some of these 'experts' realised that we are all different. True, we need to be treated as Aspies, but also as individuals each with our own specific needs. By our very nature we can't be pigeon-holed.

Edited December 3, 2014 by Mihaela

[Waterboatman]

Recent appointment rheumatology again showed up nothing, just a consultant getting splinters (scratching head). Referral onwards in maybe three to six months to see neurology?

 

Pain relief is now Tramadol as and when needed, with "coffee" to smooth its action. Tramadol is a synthetic opiate which is highly addictive.

 

My aspergers diagnoses should now be in the early new year, I was number 10 on the list when I called some days ago. Hopefully the diagnoses will help finding what is wrong with me physically.

 

I have ramps ! Only at the front, but I can get out!

How! Well last week I asked for a "key safe" so that emergency services etc could gain access to the bungalow , just 40 minutes later it was fitted and the "fitter" very kindly also, put and secured down my ramps.

Now as these have been put down by someone working on behalf of the council, they should stay down. Rules have been bent, they had to be. The council will not do anything for me as I am too expensive and ill for their depleted finances. I think I am on the "Too expensive, and may die soon, so we won't do anything" list.

 

Otherwise I am in good spirits, and since the pain killer is an opiate which hangs around for up to seven days, I can get rather whimsical.

[Waterboatman]

On the 15th, yesterday, I had my diagnostic Aspergers interview. It really was an anticlimax, my reaction to the diagnoses surprised the clinician. I was really depresses afterwards.

The full written diagnoses will be in a week or so. If it helps good, if it makes no difference?

Slight error, I mentioned my suicide attempts in front of my sister, who I had forgot was there, so focused on the interviewer. She was rather quiet on the drive back.

The diagnoses will/should help in the diagnoses of my physical problems, and communication between clinicians will help/speed this?

Most of all. The local council now have a legal duty to help me. Social Services can no longer ignore me and discriminate against me, being accused leaves one in limbo.

The moral here is, if you are a suspected Aspergers but not yet diagnosed do not tell Social Services.

[Mihaela]

The most important bit is: The local council now have a legal duty to help me. Social Services can no longer ignore me and discriminate against me, being accused leaves one in limbo.

 

They can't wriggle their way out of it now. The same applies in my case. We must all make sure that social services and councils, never neglect this duty. Our wellbeing depends on this.

[Waterboatman]

Exploits afresh anew, really unheard of before.

 

I have this day, taken my my "Kuschall" wheelchair complete with "Alber Twion Power Assist Wheels" & "Freewheel All Terrain" up a lane, a "chelsea tractor" could not get up, being quite steep and heavily rutted, my wheelchair made progress up the bit in the middle and less deep rut! Trip continues to the Surgery and back towards the pub, that has no wheelchair access at all, I really wanted a Beer, theres the adjoining cafe. But my wheelchair was really covered in mud, my gloves were muddy and wet, the Pub said "Muddy boots and dogs welcome", obviously not "muddy wheelchairs". OH well, short look around for an alternate wheelchair entrance, none found, went back via the "valley road".

 

Granted "BOOST", not being able to turn round on the upward muddy track, the wheels power assist on max, my inability to ask. The day belongs to the "Freewheel" without which this really would not have been possible.

 

I had just intended to go around the block, to give my shoulders some much needed exercise, the route (only the 2nd time) is of a housing block which is on the side of a hill, my bungalow being on of the flattish bits, of a none square block.

 

The wheels have a 9 mile range, max is 5 bars, end of trip 2 bars, maybe of 1 to 2 miles.

 

A bit of previous history

 

I first acquired my "Kuschall" and "Alber Twion Power Assist Wheels" from "EPC http://www.epc-wheelchairs.co.uk"October 2014, over flattish distances this default basic setup was of immense use. (The control app is for Andriod, my phone is an iPhone, changing any settings on the wheels needs an Android phone, acquired and used later, when realized that changes where essential.) However my sister expecting too much of me, escorted me up a adjoining road which is very much of a deep valley shape, to a cafe in the main part of the village and a bit beyond. (I tend to go on to "BOOST" mode, when I have a visitor or am being taken somewhere. During these times I feel no pain and can do rather a lot), even with "BOOST" I was really in pain just half way through, needless to say I had done quite a bit of damage to my self.

When I am ill, hurt, whatever, I have no help, in short I could die and no one would know for maybe three weeks!

I should add, when really in pain, I tend to shut down, I know it will not help to call the NHS.

My sister makes it quite plain, that she will only visit if she feels like it and for me not to bother her, this varies a bit, nut much. On average a visit/(trip out) every two to three weeks.

This damage meant I really needed to go to the "SPORT" mode of the "wheels" as my upper body strength had declined so much, and that really still for the flattish bits, not really very far, not really very often, my range had declined quite a lot.

My weight has declined now hovering around 68/69 Kg, much rested with now "Tramadol" aiding my sleep, this has also enabled my to recover, not to where I was, yet better than I was a little time ago.

 

FreeWheel

 

Misdirected post yesterday, prompted me to try my recently acquired "Freewheel", again from EPC, (arrived Monday) the difference, improvement in handling, ease of use on a non smooth pot-holed road!!

The journey extended into a round the block, no real discomfort, felt good!

 

 

 

 

And finally

 

I think the above is perhaps a bit of a ramble, a bit like my trip.

 

I have flirted with another site, sick of children scribbling in crayons on any postings I made, I have returned.

Edited January 22, 2015 by Waterboatman

[Waterboatman]

Still waiting for my formal diagnoses, hopefully in the post.