Hello and intro — Scope | Disability forum
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Hello and intro

silverboo
silverboo Community member Posts: 3 Listener
Hi im new here. I have had agoraphobia,ocd, depression, eupd for most my life.  And newly diagnosed with adhd and autism. I find the world confusing, overwhelming and terrifying. And humans even more so.  I've on and off tried desperately to keep a job and try and live an independent life. But every time I crash/burn out.  I'm an adult who as never been able to be independent or keep a job for very long.  I've been on sick leave from my last job for just over a year now.  And I'm having to accept i need alot of help and support. Thing is I don't really have anyone to advocate for me. I have a cmht for my mental illnesses, but I've been told they are so low funded I can't even have my own care coordinator/peer support worker this time round, and they could only afford to pay for a temp.psychologist for me for a few weeks and then had to let her go. And I was diagnosed privately for my adhd and autism as the waiting lists are so long. And cmht cant really help with that and there doesn't seem to be much local support for adults.  I've been trying desperately hard to advocate and speak up for my self this year for the 1st time ever. But Im really starting to burn out from it.  I have to rely on my ex who I still live with to go shopping once a week.i don't have any family anymore and only have 2 friends left who I don't want to bother anymore. I'm trying hard to get all support in place before I do burn out, because when I burn out I stop 100% bothering with my self and engaging with support.  
I already missed an adhd follow up appointment couple weeks ago because of overwhelm and being drained.  I have read that i should ask council?  for adult social care assessment, but I feel like maybe they would think Im too ok for support or that I'm taking it from someone who needs it more.
Sorry its so long. And happy Xmas 

Comments

  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
    HI @silverboo, welcome to the scope community :) It's a bit quieter than usual as it's christmas eve but there's regulars still around. 

    I also had to go private to get my ADHD diagnosed, the waiting for the NHS is awful isn't it? 

    I'm happy to hear you advocating for yourself for the first time. I got diagnosed with ADHD last year and was lucky, this is the first year that's looked better at the end than it did in the beginning. I know that cycle of burnout too, I would just stop caring, stop even trying to keep to a schedule. It's really good to see you working to get support in place! It's the first step. 

    We have people in the community who are very friendly :) You can find them usually chatting in the Morning thread.  I suppose it's more of an "all day" thread now.

    Are you still talking with your CMHTs at all? Even if they can't help you with the ADHD and Autism directly did they signpost any places you can get the support?
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
    Online Community Specialist

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    Opinions are my own, such as mashed potato being bad.
  • silverboo
    silverboo Community member Posts: 3 Listener
    Thanx for answering specially on xmas eve. Yeah last week I didn't shower for 7 days, I know I'm gross I just struggle to take care of my self. Yeah i was on the waiting list 8 months? Before deciding to pay instead, totally worth it tho.
    I see cmht very regularly. Sposed to be every week but when I've been too overwhelmed I've had to cancel. They are mainly focusing on my gad and agoraphobia atm. Which is what i asked for as going to appointments might be bit better when that is a bit more under control. No they didn't sign post me to anything. I did ask. I even asked if they could show me somewhere to go for transgender support as im going through transition alone too.  think i can come across as not being as bad, because of masking and scripting. I have made them aware of that. But i think they think its ok just to let me take full control and do it alone. Problem is my mask as slipped so much this year, I'm massively struggling to even mask a little, but do it just enough to be able to verbally communicate a bit when I need to. Obviously I want to be independent but I think I need more help and support/someone on my side to guide. I will check out the thread u mentioned thank you. Happy Xmas 😊 
  • Ada
    Ada Scope Member Posts: 13,811 Disability Gamechanger
    Hello @silverboo I don’t have any advice for you. But I do have a very warm welcome from me to our Scope Family. You will find friendships and support as well as advice. 
    I hope to see you around the site. 
    Sending hugs 🤗 
    ada x
  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
    silverboo said:
    Thanx for answering specially on xmas eve. Yeah last week I didn't shower for 7 days, I know I'm gross I just struggle to take care of my self. Yeah i was on the waiting list 8 months? Before deciding to pay instead, totally worth it tho.
    I see cmht very regularly. Sposed to be every week but when I've been too overwhelmed I've had to cancel. They are mainly focusing on my gad and agoraphobia atm. Which is what i asked for as going to appointments might be bit better when that is a bit more under control. No they didn't sign post me to anything. I did ask. I even asked if they could show me somewhere to go for transgender support as im going through transition alone too.  think i can come across as not being as bad, because of masking and scripting. I have made them aware of that. But i think they think its ok just to let me take full control and do it alone. Problem is my mask as slipped so much this year, I'm massively struggling to even mask a little, but do it just enough to be able to verbally communicate a bit when I need to. Obviously I want to be independent but I think I need more help and support/someone on my side to guide. I will check out the thread u mentioned thank you. Happy Xmas 😊 
    Even with meds I can struggle to remember to shower! Can't explain it, just slips my mind, and then when it is in my head I'm often too busy doing something else. I'm lucky to have a partner who prods me enough after the third day.

    Paying private was worth it, it's just a shame we often have to do it. Compared to before treatment it was like my life was "on hold". I'm now actually able to move forward a little :)

    It's okay to drop your mask, masking is tiring, especially in the long-term. Maybe trying to go back to the cmht might be an idea if you are now struggling more?

    I hope you had a wonderful christmas, hopefully next year will be a better one! 
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
    Online Community Specialist

    Concerned about another member's safety or wellbeing? Flag your concerns with us. 
    Want to give us feedback? Complete our feedback form now.
    Opinions are my own, such as mashed potato being bad.
  • silverboo
    silverboo Community member Posts: 3 Listener
     Yeah and also time blindness is real like i become aware i havent showered but no clue how long. I'm lucky I get prodded if it's been a few days too. I am writing a load of things down for when I see cmht. And ive made adhd clinic aware of lack of effectiveness of meds. (Unfortunately my promised up of dosage elvanse cant happen untill shortage is sorted) and im gonna try and get more involved with my autism clinic.
    Happy new year hope 2024 is awesome for us all. 

Brightness

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