Really struggling to deal with all this I am so exhausted I just want to curl under my bed all the time
Really struggling to deal with all this I am so exhausted I just want to curl under my bed all the time
The DLA is £68 a week is paid in to my mums account monthly I think if my maths is correct its about £340 a month my mum says she is keeping the DLA until I am older and living on my oem but I don't believe her I pay her £200 as rent each month again she says she is not spending this but who knows what she is doing with it all that's about £550 a month its a awful lot of money.
I am working almoat full time 35 hours a week if she was my carer and if I was to pay her for some assitance she prob wouldn't give it to me the help that I need.
I think the suitation from her point of views looks like she is trying to take everything which I should be emtirled to to let me struggle with things the DLA is meant for things like getting hair washed - no way I can do it properly myself simple things I know it is stupid but just the way that things are.
DLA is for you - not your mother. If she is your official carer she would need to apply for carer's allowance which is a different benefit.
If you are able to work then you are probably able to live independently too, and being away from all the stress might be a good thing. Yes she probably does have your best interests at heart but it is not unknown for family members to steal benefits from disabled people.
I suggest visiting a Citizen's Advice Bureau or local welfare rights centre
www.adviceguide.org.uk/.../benefits_for_people_who_are_sick_or_disabled.htm
My understanding is that the DLA is yours to control. As I understand it, you can "employ" her as a carer and pay her for some assistance. You should speak to Dept of Work and Pensions and they will advise and clarify your own situation.
If you are living at home, earning and getting DLA then it would be reasonable to pay your mother some rent but you should have a proper agreement with her about what the money gets spent on.
Sez,
I am working on the assumption that you are an adult and that your parents are no longer responsible for you. I also assume that your mother is really trying her best and that she has your best interests at heart. It is possible for a court to decide that you are not capable of looking after yourself but his is a major thing that involves the Mental Capacity Act and I very much doubt that this has been used in your case. The doctors will know this and it sounds as though they are playing by the rules and letting you decide about who gets told anything about you. As an adult you have rights that you didn't have as a child. It may be that your parents are struggling to accept that you are now an adult and that they have to stop treating you like a child.
I suspect that your mother may not agree with some of your decisions and she may not understand why you make some decisions. ASD can make people appear to be less clever than they really are because we struggle to communicate and sometimes we simply don't think the same way as other people so we come to different (not necessarily better or worse) decisions to other people. Your mother may be trying to protect you, as any mother would, from you making mistakes.
I suspect that your mother does not understand anything about ASD and that she may not understand much of what you are going through. What do you think the situation looks like from her point of view?
Thanks for this I don't want to be a burden on my GP asking her to write letters eg to my GP what I could do is if my GP says to me that my parents have wrote to her I which she always does if they do that I can say to my GP to respond saying that it's ok to tell my parents what is going on I still don't understand how my parents say they are entitled to know everything about my health care eg the CMHT what I say to my GP eg my mum claims she is my ' carrer ' prob cause she gets DLA for me but I don't see any of it and my mum doesn't use it for me she just uses it for herself it is all so messed up everything is such a mess and it is just causing me so much stress eg my mum says that I am not allowed to move out of home cause I can't look myself but I could if I got dla in a way I can look after myself I just refuse to look after myself when I am not getting the money I am entitled to does that make sense ?
Is my mum really my career becayas she gets dla wjen the dla should be mine when I turned 16 I ak mow nearly 26 in a week.
I have anorexia depression anxiety and possible asd. :(
my life is just going so dowm hill ATM I really do hate my life so much
Sez said:When was at the hospital I told my mum to go she didn't listen she stayed kept saying things like ' its so late you lying eg eg with swear words and kept looking at me in really evil way turns out I was very very ill and my mum does not know how ill I was still not 100 % only my GP and the hospital know
.............. I'm a adult right if anyone knows any info on this plz let me know ?
I can understand your fury at being treated like that - I would be swearing too! Fortunately I have been living on my own when I have had my "wobbles", but the downside of that has been that sometimes I could do with support and there is nobody around.
If your parents do not believe you are ill, then I would ask your doctor to write a letter/report clearly stating exacly what the issues are. Give your parents a copy.
Tell the GP that you want copies of all correspondence and all tests. I have a large folder now with all this stuff in it, and it is very useful to refer back to.
You can also request copies of your medical notes, however you would need to pay about £50. Either save the scans online, or if you keep paper notes and your mother is nosy, get a metal box with a good padlock :-)
Good luck x
In the past I have been diagnosed with CFS and anorexia. And in a roundabout way, this is how I ended up on this site!
Fortunately the GP I have now is brilliant, but have had a lot of battles with them in the past. Much has been down to their incompetence and inability to spot connections that seem obvious to me, but some down to me doing dumb things (eg during a manic episode writing a 10 page rant to one GP, littered with capital letters and explaining the meaning of life) 
CBT can be a great help but it doesn't address the physical causes of CFS, which are different in each patient. I like the approach of Dr Sarah Myhill, who is based in North Wales and has had plenty of battles herself with the medical profession!
www.doctormyhill.co.uk/.../About_my_practice
www.doctormyhill.co.uk/.../_ME_sufferers.
She has written a book about CFS called "Mitochondria not Hypochondria" which looks very interesting.
Well they saw I lie about everything when I don't lie about anything at all not that type of person.
I eeally don't know its a diffucult suitation to be in and the GP was persuading me to call my mum so I did but wish I hadnt would have been very difficult for me to get to hospital otherwise.
When was at the hospital I told my mum to go she didn't listen she stayed kept saying things like ' its so late you lying eg eg with swear words and kept looking at me in really evil way turns out I was very very ill and my mum does not know how ill I was still not 100 % only my GP and the hospital know
my GP does keep everything confidental and she won't tell my mum without asking me first
its so strange though as my parents write letters to my GP saying they should be involved in my care ( that's not right ) I'm a adult right if anyone knows any info on this plz let me know ?
My gp always tell me if my parents have contacted her and says to me do you want me to let your parents know what's going on and how you are - I say ok almost always
this gets me so so DOWN and DEPRESSED !
People with ASD think differently and express themselves differently compared to non ASD people. Misunderstandings and arguments are very common parts of our lives and this is one of the reasons that we end up in confusion and depression. I was diagnosed because my bosses at work simply did not understand me and I did not understand them and we were having continuous arguments about things.
It is a short step from that to someone calling you a liar and it could be because you said something that perhaps might have been expressed differently or more or less completely by someone who wasn't ASD?
The situation at the doctors sounds very difficult for everybody concerned. You were probably very stressed, your mother was probably very stressed and the doctor had some sort of a scene going on in the hallway. The doctor may have tried to defuse your mother's anger by partially agreeing with her. Have you tried to imagine how it was for your mother and the doctor? What would you have done if you were in their shoes?
Patient confidentiality is an important part of the doctor patient relationship. If you tell the doctor that you wnat things to remain confidential then they should remain confidential. If, on the other hand, you have agreed that your mother should collect you and take you to the hospital then it is slightly different - it would be almost impossible for her to do that without being told some of the reasons by you or the doctor. You have the right to tell the doctor what can be said to your mother.
I didn't know that interesting.
I dont think its that my gp knows a lot about my past trouble is though is my parents say I lie about things and they said that to my GP when I was there so now whenever I tell my GP something she isn't likely to believe me which makes it very difficult for me to get the support that I need at the moment.
My GP wasn't really standing up for me though ill explain what hapowned briefly : my GP exaimned me and said i needed to go to hospital and to call my mum to take me so I did my mum arrived shouting and swearing saying ' you lying and other words which I won't go in to then my gp came out and said let's go to my office my mum wasn't having it she was in the surgery hallway saying how much of a lier I am my GP was literally agreeing with my mum was so hard for me and still is now I feel like it is just a waste of my time soeaking to my GP ask it alwaya makes mw feel worse going to try and tell the cbt person about this on Monday as I feel it would be helpful for her to know I feel the best thing to do is just to keep things to myself but if a medical emerhwjcy was to occur then my patents would not take me serioursly.
Dyspraxia is a common companion for many people with ASD.
It sounds as though you are afraid of your GP learning all about your past. Do you not have a GP that you can trust to work with you?
Yes it seems to be I mean this person just has doctorate in psych but that's very hard to get any requites a lot of training and at least doing it privately then no info gets passed on where as if I did with NHS then the therapist would have to pass on quite a lot to my GP eg about what I said about my problems eg that is how the NHS work together well there meant to they don't half the time.
i am running out of ideas of what else to try I'm hopping after couple of sessions of cbt I will be feeling better will just have to see a family member knows the therapist bit of course she can't say to them about the sessions eg that I am going as from first point of cobtsct its all confidentally I have met the person once but didn't really talk she seems like a nice person and in her 30s which is good for me as I want to work with a therapist a similar age to me.
I am trying to stay awake till about 11 pm then sleep till 6 am get up for work and see if that helps as ATM I think I am getting to much skeep trying so hard to stay awake in the day and see if that makes a difference I am just so tired all the time ATM but I am trying to eat re and eat more when I do eat which I feel will help and also help me to recover from the anorexia that apparently I have according to the eating disorder clinic where I am not going anymore.
i have found that how you think is all in your mind basically if I think sad I will feel sad if I think happy things I will feel happy its strange in a way but it does make a massive difference.
With the despraxia I find every day tasks diffucult now this could be due to the Asd if I gavs that but have been diagnosed with despraxia since a very young age and it does affect me quite badly certainly enough to make me feel depressed and anoxious a lot of the time but I have found that if I tidy my room eg when it is a mess it gives me a sense that I have done something well and just helps me to feel better everyone has there own ways to help them feel better.
Sorry about long message
I suppose that that's what it costs to get someone who is properly qualified?
I have decided ftm to possibly do cbt privately as I know waiting for it on the NHS will be about 6 months and want to feel better soon is costing me £80 for hour and a hair assesment and then £80 after that for hour sessions its a lot but I will see how the assesment goes and go from there I'll let you know how I get on.
Hi Sez,
NHS Choices website has some useful info on this. It describes it as a serious condition and I think that means that it has a significant real impact on people that suffer from it. It also says that you can have it to a mild, moderate or severe degree. I don't think that it means there is a serious physical problem behind the symptoms. It may mean that you are overwhelmed and stressed by things that are going on in your life. It may be that it is your body's way of saying slow down and let me build up reserves of energy. The first suggested therapy for this is cognitive behavioural therapy (CBT) and I would encourage you to pursue this with your doctor. Print out the page and say that you have read about it on the NHS Choices website and he might find it difficult to refuse. Taking a printout with you like that can be useful when trying to persuade a GP that something needs to be done.
www.nhs.uk/.../Introduction.aspx
Yellow Sunflower's experience is, I think, encouraging and might help you think of it as a short term (but real) problem that is most likely to subside with time.
I have been diagnosed with cfs and just finding it very hard with everything else that is going on I have heard that things can help like exercise and getting plenty of rest but I don't want to get plenty of rest I want to be a active 25 year kid enjoying life but at the moment I just can't.
I have bouts of Chronic fatigue syndrome or M.E. throughout my life. If you google it, it will expand on the whole range of symptoms, as it is a bit different for everybody. Depression can also do this to you. You can also get CFS after a virus, like a cold. My last bowt was two weeks ago after Lyme Diesease. I forgot i can get it after beeing unwell and thought i was in with it for the long haul. Luckily, this time it lasted 2 wk! Even anemea, the winter, emotional upset can do it too. I really hope it doesn't last too long. I can get debilitated with it.
