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Being independent (long thread)

66Mustang
66Mustang Community Co-Production Group Posts: 6,020 Disability Gamechanger
I appreciate this is a vague question

I am reliant on my parents for most things due to a combination of issues - OCD and autism/social anxiety but I believe the most significant issue is what I call my obsessive thoughts. These are thoughts that I am going to lose control and do something bad on purpose. A couple of examples are while driving, I’m worried I will crash the car, or while using a knife i.e. to cook I’m worried I’m going to hurt myself or others. These are just two examples - the thoughts plague every aspect of my life. The thoughts are less bad when I have someone with me for support but they are absolutely still there and a problem.

I’m reliant on my parents to do certain things, like take me to appointments or the shops or cook for me - that said, for the last few months, I have been doing a bit of cooking with someone there to support me, however I wouldn’t be able to do it on my own.

I’m reliant when going out as I couldn’t manage on my own due to the worries about losing control. There are other reasons like the social anxiety but this is a lesser problem and I believe if I was to tackle these horrible obsessive thoughts once and for all I would be able to start work on the social anxiety.

I’m just wondering about where to start if I want to be able to live on my own one day. Of course one day I will be forced to live alone, so ideally, I want to start doing it while it is still my choice, and, while my parents are still about so they can see that I’ve managed it.

Without sounding arrogant there are some things I am great at and will have no issues doing on my own - managing money being one - in fact I sort of manage the household finances as I am better at it than my parents and am nicknamed the family accountant! Another one is communicating via email or letter - people say I write a really good letter. However the things I can’t do seem to outnumber the things I can do and I need to work on those.

Here is a list of the main things I struggle with doing by myself. There are others but I feel these are the main ones.

- Cooking

- Going out: shops, medical, work, social

- Interacting with others

- Driving (although it might be that I could do without a car)

- Using the phone

- Organising and dealing with tradespeople when things go wrong in the house

- Working!

I appreciate my independence may be different to a lot of peoples. For example I may not have a massive social circle, I may only go shopping at night or quiet times, I may do without a car, etc. but if I got to a position where I could at least survive on my own I’d be happy.

I think I’ve possibly answered my own question in that I need to start by dealing with these obsessive thoughts, because compared to those, the other issues are manageable. However I’m not sure where to start here. I have spoken to numerous GPs, psychiatrists, psychologists etc. to no avail. My current psychiatrist does not seem too concerned. I am waiting on an appointment with my new GP in the new year and am optimistic about that. Do I just need to persist?

I’m just wondering if anyone has any suggestions?

Thanks

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Comments

  • rubin16
    rubin16 Member Posts: 237 Pioneering
    Hey,

    I have Autism too (as well as mental and physical health problems) and trying to gain my own independence. I also have problem socialising and I rely on my family alot for shopping and support, I recently moved into supported accomodation whereby I get 12 hours a week support from support worker who takes me out shopping or to somewhere to eat and manages my bills and finances. The supported accomodation is my own lovely flat fully furnished in a quiet area and I'm really happy here and getting settled in.

    Depending on your area there should be options for something similar, I would research support services in your area and see if you could potentially be put on the waiting list for your own property with support. I had to wait a few years to get my own place but already feel like it was the best thing ever that happened to me and I'm so greatful. Also once I'm deemed independent they will transfer the tenancy over to me and let me keep the furniture so I have this flat for aslong as I want.

    I hope this somewhat helps, but theres support out there you just have to look and be referred, my nurse refered me for this property but I'm sure your GP or family members can refer yourself.

    I hope you manage to find something and start to gain your independence, all the best.
  • woodbine
    woodbine Community Co-Production Group Posts: 6,123 Disability Gamechanger
    @66Mustang the only advice I can offer is "one day at a time".

    Have a safe and happy Christmas.
    Be kind to newer members
  • 66Mustang
    66Mustang Community Co-Production Group Posts: 6,020 Disability Gamechanger
    @rubin16

    Thanks for the reply

    I’m pleased to hear about your situation improving and the support you managed to get.

    I kind of want to say I don’t need a support worker as I have my parents but I am guessing a support worker is better trained to get me to start doing things for myself. My parents will always do something for me if I don’t feel able to do it, but I guess a support worker has ways to encourage me to start doing it for myself?

    In your experience, as an adult, are support workers discrete when you are out and about? One thing that I struggled with in the past was in public when a support worker made it obvious that they were support workers as it felt like a spotlight was being shined on me with a banner saying I have issues. However this could be because I was younger at the time - maybe adult support is different.

    I don’t think I am ready to live somewhere on my own just yet, but if it takes several years to get a property, I think you are right that it might be worth putting my name down now in the hope that by the time I am offered something I am ready to take it.


  • 66Mustang
    66Mustang Community Co-Production Group Posts: 6,020 Disability Gamechanger
    @woodbine

    Thanks for the kind words, I guess you are right, little improvements every day will add up to big ones over time :)

    I hope you have a great Christmas too.
  • janer1967
    janer1967 Member Posts: 13,376 Disability Gamechanger
    You have made a start by cooking and even though it's supported that's how we all learn 

    I can see your writing skills by how you comment on here maybe something you can develop more 

    Good luck and have a great Christmas 
  • Teddybear12
    Teddybear12 Community Co-Production Group Posts: 2,175 Pioneering
    Hi @66Mustang You have made a start, keep going. Happy Christmas.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,660 Disability Gamechanger
    Hi @66Mustang - I also can see some progress here.....think how you were a year ago, & what you have since achieved. I hope you are enjoying doing some cooking, even if it is with support; keep at it, as it's so rewarding.
    It must be frustrating not having had appropriate help for your obsessive thoughts, so I hope your new GP helps support you with this. Yes, do keep on persisting. Perhaps make some notes as to the main problems you have prior to your GP appointment so they'll really understand what you're going through.
    My best wishes for a lovely Christmas & for a better New Year for you. :)
  • 66Mustang
    66Mustang Community Co-Production Group Posts: 6,020 Disability Gamechanger
    Thank you everyone for the lovely posts.

    I guess I have made a start and am doing all right compared to a year ago in some respects like cooking, and I have used the phone a few times for short calls. I’ve also moved the car by myself - I didn’t go anywhere, just shuffled it between the parking spaces at the front and the back of the house - but little steps I guess. :)

    Though I feel in some ways I have been knocked back since COVID happened (I guess we all have) in that I was going to an informal support/social group at a pub once a month, but since the restrictions put a stop to that for months I haven’t been back and I don’t think I’d manage it now. I’m still in touch with a couple of the people via email though which is positive.

    I guess it’s important to remember the positives but also focus on the negatives so I can improve those.

    Merry Christmas everyone :)
  • woodbine
    woodbine Community Co-Production Group Posts: 6,123 Disability Gamechanger
    Why not draw up a list before new year of things you want to achieve and in what time scale? Then as you do whatever you can cross that off the list.
    Be kind to newer members
  • OverlyAnxious
    OverlyAnxious Member Posts: 1,721 Disability Gamechanger
    Hi Mustang,

    I genuinely believe you would be able to manage on your own ok, though living near to some support (either family or social) for if & when you needed it.

    You can cook without any sharp knives...not a cordon bleu meal of course, but basic things.  I don't have any sharp knives or peelers in my flat.  I know several people that can only go shopping or GP etc with support, that's not such an unusual requirement.  You could always build up slowly going out for leisure on your own in short periods and short distances etc while also having help for necessary outings.  You have improved with the telephone use so just keep going with that.  And interacting with others is something that it seems almost everyone has struggled with since Covid but more so for those of us that weren't so good at it before.  Again, that's something I think you'll improve slowly with practice again.  Not sure which part(s) of tradespeople you'd find most difficult...this is something that I've always found difficult due to contamination OCD, social anxiety, timescales (around IBS etc) and agoraphobia (being trapped in what should be my 'safe place' and without access to the bathroom or kitchen etc)...it's a bridge that you just have to cross when you reach it unfortunately, not much option when something breaks that you can't fix yourself.  If you're in an agent let place, they'll often deal with the admin side so you can just contact them via email (unless it's an emergency...burst water main might need some more urgent spoken comms lol!)

    As for working...I think you should probably leave that in the back of your mind for now.  I spent years trying to find a solution so that I could work 'around' my problems...  It never did work out, I tried various jobs, mostly self employed, and tried lots of potential solutions.  In hindsight, I wish I'd spent that time trying to improve the problems instead of trying to work around them.

    It does seem like your intrusive thoughts are the biggest issue to you taking the next step here.  It is part of OCD but more difficult to manage because the compulsions are mental.  I know we've discussed it before but there really is no 'help' that anyone can give you for this, it simply doesn't exist.  The thoughts themselves are just thoughts, the problem is your reaction to the thoughts and the intolerable fear that you will actually act on them...every time you focus on the thought or believe it might be true you're just fuelling the OCD.  The only way to break the cycle and take away that fuel is to just 'allow' the thought, without trying to justify it, and without trying to actively avoid it by thinking of something else.  There is no other method of dealing with them, there's no exposure therapy like there is for handwashing etc.  You will always have intrusive thoughts, everyone does, some more than others, but ultimately you have to accept that they will always be there, and you just have to learn to live with them, they should pass much more quickly when you've achieved that, and stop the seemingly unending tormenting anxiety caused by them.  So HOW do you do that?  Well, if I could answer that, I wouldn't have so many myself lol!  It is hard and it will be a slow process, but as long as you keep working on it and chipping away at it, and not slipping back into the 'old' ways of giving the thoughts meaning again, it will improve over time.  Most 'anxiety' CBT therapists don't understand OCD so you're unlikely to get any real help with it from the NHS. 

    In 2, 3, 5 years time you may pick up a knife to cut a slice of cheese and get an intrusive thought about harming yourself with it...appreciate and understand that it is just a thought and will pass shortly...and by the time you've sat down with your cheese, crackers and whisky in your own arm chair in your own flat, the thought will have passed and you'll be focussed on your nice, quiet evening in.  :)


  • 66Mustang
    66Mustang Community Co-Production Group Posts: 6,020 Disability Gamechanger
    Hi - I just wanted to say sorry for not replying yet, I’ve been occupied with Christmas/family and am currently up with stomach problems so can’t give the full attention I’d like to my reply but just wanted to say I do appreciate the posts, haven’t forgotten them and intend to reply properly soon

    Thanks :) 
  • Teddybear12
    Teddybear12 Community Co-Production Group Posts: 2,175 Pioneering
    Hi @66Mustang I hope you will soon feel better. Keep warm a hot water bottle can sometimes help. Take care.
  • 66Mustang
    66Mustang Community Co-Production Group Posts: 6,020 Disability Gamechanger
    edited December 2021
    Hi @woodbine

    Thank you. I actually have a doctors appointment in the new year so I have done that and will take it down to my appointment and see what they say. Hopefully they will be able to advise.


    @overlyanxious

    Thanks for the post. I’m glad you think I’d be able to manage on my own, as I know you know my problems quite well.

    One of the things that makes me think I’d struggle is that I find it difficult being left alone at home for more than a couple of hours. I sometimes get left at home for a few hours, when my Dad is at work and my Mum has an appointment, and after maybe 90 mins - 2 hours I start to really struggle with the obsessive thoughts that I’m going to harm myself in some way.

    That is a good point about working. Maybe I need to get better first rather than find a job I can do in my current situation. Or at least maybe get a little better, if not completely, then find a job with a small amount of adaptation. I was thinking perhaps there would be some kind of office/bookkeeping work done from home, maybe with a trip to the office 1-2 days a week (couldn’t drive myself but could get parents to drive me or, if I worked on it, maybe get a taxi if it wasn’t every day), would probably have to get over the phone issues as well though!

    I think you are right about the talking therapy - I have tried all sorts of talking therapy on the NHS and none have worked but still wonder whether there is a medicine or something that can take the thoughts away, even a bit. Not saying you are wrong just I don’t want to give up hope :D I have noted the thoughts get less after alcohol. I’m not suggesting alcohol as a solution but my point here is that shows there is a chemical in existence that does work on the thoughts. Because of that, perhaps there would be other chemicals (medication), specifically ones that I can take that don’t impinge on daily functioning like alcohol does and still allow driving etc?

    To be honest I’d take something even if it didn’t allow me to drive as long as I wasn’t so knocked out that I couldn’t function. I remember as a teenager my thoughts were misdiagnosed as psychosis and I was given some medicine that really sent me dizzy, sadly it didn’t work though.


    @teddybear12 thanks for the kind words, the stomach settled down after a few trips to the toilet!! I think maybe nerves plus the rich Christmas food got a bit too much.

  • bekindalways
    bekindalways Member Posts: 134 Courageous
    @66Mustang Helli again Mustang.  I am really sorry that you're having those thoughts and hope your appt went/goes well with your gp. I find it helpful to write down bullet points on what I need to get across in any appt so I won't forget and my doctor has the full picture.

    You write extremely eloquently and in all honesty, I really didn't know you were suffering as much as you are, so please accept my apologies for not picking up on this. You always come across as a nice fun person.

    Intrusive thoughts must be pretty frightening and I hope your gp can advise what is best for you both in the short/medium and long term especially as it can at times relate to harming yourself or others. Have you maybe tried to break down the things you want to be able to do by yourself into manageable chunks? Setting goals for yourself is a super way to start, but please remember that in setting yourself some goals for this year, that you make sure you're not overstretching yourself which may exacerbate your intrusive thoughts. 

    It's absolutely brilliant that you're doing small things on your own. The more you do that, you will definitely become more confident over time. Sometimes I wish I could wave a magic wind and everyone would be better, but hey ho..... 

    So keep doing what you're doing.... because reading your post shows that you're aware of what's happening and you're doing everything in a way that's taking you in the right direction. As I said earlier, if you can write down some bullet points, it may help your gp understand more fully, your fears. And please please please, do not overstretch yourself or try to do too much too quickly and make sure everything is manageable. Set your own pace. 

    Sending kindest wishes to you, and your mum and da. (Sorry for the long post, but I can ramble at times) 👍
  • 66Mustang
    66Mustang Community Co-Production Group Posts: 6,020 Disability Gamechanger
    Hi @bekindalways and thanks for the nice message.

    The GP appointment has come and gone now (I probably should have updated this thread, sorry about that) but I did exactly what you suggested and wrote down a whole page of information for the doctor.

    She was helpful and supportive but I think ultimately was worried to do anything because last time she altered my medication and my psychiatrist got very unhappy that another doctor was interfering.

    My psychiatrist doesn’t seem to do anything to try to help. He has promised medication and therapy in the last 6 months or so and I am yet to receive either. I appreciate there is Covid going on so the therapy may take a while but not sure that affects the medicine. I am especially disappointed as he said there is medicine that could help me, but I need to cut down my alcohol intake for it to work, and to come back once I’d done that. I did so and reported back and he then said he wasn’t willing to give me the medicine.

    You make a good point about not rushing in too quickly with my goals and I will keep that in mind. I’ve had the issues for many many years so it doesn’t matter if it takes time to work on them. Truth be told I feel lucky in a way to have problems that potentially can get better.

    Thanks again and I will keep the thread updated if anything changes :)

  • bekindalways
    bekindalways Member Posts: 134 Courageous
    @66Mustang Thanks for the kind words hun. I'm sorry that you're not getting much support from your Psychiatrist. Sadly some medication has a caveat regarding alcohol and it's dangerous to mix the two. Is there no way you could bring forward an appointment to discuss your worries and concerns? 

    As I said in my previous message, you are working towards something better so never lose sight of that, no matter the timescale. Its still progress. Maybe try something, when you have intrusive thoughts, to disconnect that link. Play some music that you love that's upbeat and concentrate on that or something else that you love doing.  

    And of course, you always have your friends on here who are always there to have a natter. 

    Big hugs to you and your family. Xxx
  • bekindalways
    bekindalways Member Posts: 134 Courageous
    For some reason, I'm still not getting notifications when someone replies, so I can only apologise in advance, if I ever miss a response. Doh!
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,660 Disability Gamechanger
    Hi @66Mustang - is there not a case to be made with your GP, that, altho your psychiatrist said there's medication that they would be willing to prescribe if you cut down on alcohol, having done so, the psychiatrist is no longer willing to prescribe?
    I can only speak from personal experience, but I did have one specialist, who was initially helpful, become unwilling to say what he felt as, in his words, ''he was unwilling to step on another Drs toes'' (I feel this should actually be named a syndrome that some Drs, rather than their patients, have). Altho not mentioned as such, this attitude hindered our family getting a diagnosis for several years.
    So, now with no conflict of interest, perhaps worth a further discussion with your helpful & supportive GP. As she knows you best, she may be willing to let you try the medication that may indeed help.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,660 Disability Gamechanger
    edited January 14
    Hi @bekindalways - about notifications, click on your profile picture/avatar, then 'Edit profile.' This will show a list, including 'Notification preferences.' Tick those you want to receive by email &/or pop up. Make sure you 'Save general preferences.' Hopefully that will sort that, if not, contact the Scope team.
    Edit: I 'think' it's the 'Notify me when people comment on discussions I've participated in' that you're asking about.
  • bekindalways
    bekindalways Member Posts: 134 Courageous
    @chiarieds Hi again hun, yip I'd already ticked all the boxes, so I think it just doesn't work for me. One of the mods tried to help out a few weeks ago and it didn't work then.

    I've made a point of coming on here each day now to get a bit more consistently involved in saying hi to new people and the coffee lounge etc, so I'll just check in the notifications to see if anything changed, much like it did when I saw you'd commented. Thanks tho for the advice there. Enjoy the rest of your evening xxxxx

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