How do I get support?

[Itwasthereallalong]

I’m wondering after a particularly tough couple of weeks mentally if I am able to somehow get some more support?
I’m not sure what that looks like or where to go to ask but I know I need some support as I have no professional support and a very small support network.
I am diagnosed with asd, generalised anxiety disorder, manic depression (I have never been told this but have seen it in my medical notes on the nhs app), Eupd (which has taken me a long time to accept) and I think I have something going on which is linked to allot of trauma in childhood although maybe those diagnosed cover it, I don’t even know!
I keep to myself and just quietly get on with my life and don’t cause anyone any problems. I’m not the “typical” eupd (sorry if that sounds judgemental) but I don’t fear abandonment as prefer to be alone, don’t self harm and have only done so under extreme distress and I could go on but I won’t because I don’t want to upset anyone with stereotypes because they suck!
My long standing struggles over recent years have been paranoia, potentially hearing things but maybe they are really there, it seems like it! And “delusions” but they feel very real to me.
I have become almost a recluse almost never leaving the house and even more almost never alone!
I have very low motivation levels and struggle to even wash and take care of myself properly although I do manage to keep the home clean and orderly because my brain sees that as routine?! (I don’t even understand myself at times!)
I’ve gotten myself into debt again after working so hard to sort it from last time as I’ve not been able to manage my finances well and have had a tendency to impulsively spend.
I am too anxious to do almost anything outside of the safety zone of my own home and have kind of just disappeared from society and nobody seems to notice because I’m just not that important to anyone which isn’t me feeling sorry for myself, it’s just how it is.
I’ve done some therapy in the past and re-referred myself but after assessments have now been on a waiting list for 12 weeks but I am scared of the mental health professionals in a way as once when I did end up under a crisis team, I was almost sectioned so I am careful about how open I am when I do do stints of therapy.
I know I need more help. I’ve been working on myself mentally allot and intensively over the last couple of years and have made allot of progress but sometimes I feel so trapped inside my mind and my situation that I just don’t know what the next step is. I don’t know how to advocate for myself and there is no one else to do it with me either so I feel very lost with it.
I don’t want to accept that this will be it forever, I so want to get back to society, to have a job, to not feel like this. I have periods of feeling good but they never last and it’s so frustrating because I really don’t want to be this way.

I’m sorry you’re struggling OP, I’d recommend starting by going to your GP. They can open the door for other support options and let you know what is available. Unfortunately it is likely to be a longer than ideal wait though.

You sound very similar to me. I think you need to see your GP and ask for a referral to your CMHT.

@Mrsttcno1 what would I say to a gp? I struggle to even get to my appointment for heartburn because I’m so anxious about going anywhere alone and fearful of medical professionals (it’s taken me a long time to even realise that!) so I have no idea what I’d need to say or how to say it?! I am ready to ask for some more help now though, I guess if they don’t know I need more help how can anyone actually help?!
I am hoping that when I eventually get to the top of the therapy wait list that it can be really helpful to me, I’m ready to open up fully and really get the help I need although saying that now and actually doing it when I get there are 2 different things! and I’m so aware of the wait lists, it’s been around 5/6 months since I self referred for some talking therapy and 12 weeks on the wait list since the 2 assessments. I know it’s just the system but it’s frustrating. It sometimes feels like because I’m not suicidal and planning to end my life it’s just not important but the way my brain and spilling over into my body struggles because of my mental health is so so hard to live with at times.

@ninjahamster I’m sorry you have these struggles too, it’s harder to live with than it is to put into words and even that feels almost impossible! How would I go about asking for that? Do I need to give reasons I feel like I need more support? What support I feel I need or is it chosen for me if I eventually get to qualify? And WOULD I even qualify considering I don’t want to end my own life?

sorry to ask so many questions but @ninjahamster as you said you are similar to me, if you get additional support, what does that look like and how does it help? Are there any bits of that support that you’d feel comfortable sharing so I could adapt them and try them alone? If you don’t want to go into anything like that though it’s so totally ok, not to pry! Just to get some ideas of what I can do to help myself.

You could even just hand your GP a written note that states exactly what you have put in your post here if you feel that would be easier than trying to get it out verbally OP. Nobody can help unless they know what help you need and that’s the really important thing- you have to share what you need so that you can get that help. If you do struggle to communicate with GP verbally you an absolutely take a written note or a friend/family member to help you.

Hi, happy to answer any questions. I really struggle to leave the house so tend to do GP appointments via phone as I can cope with that much better.
I am under the CMHT. It’s been a long journey as we have tried many, many medications and that’s been the focus for years. We have now moved to a therapeutic plan and they are meeting this week to discuss it as I’m quite a complex case.
Under the CMHT, I have a care coordinator and a psychiatrist. I also have access to the crisis team.

Definitely GP @Itwasthereallalong it sounds incredibly tough for you. You need some kind of team that you are linked to always for support. If you need to maybe you could put what you have written here into chat GPT and get it to write a brief summary of what you should say to your GP. It is brilliant for that.

BTW from reading what you have written I think you sound like a person who is managing a disability but from time to time you need some input from others when you get overloaded/overwhelmed. I have two children with ASD and as a parent I provide that support for them when they get to that stage and we have set the elder one (adult) up with a therapist we pay for on and off.

It is not at all unusual with ASD to require the adult version of that when parents are no longer there. It is just intermittent support when the need arises.

Thank you @Mrsttcno1 , so I guess it’s just plucking up the courage to make a gp appointment stating what’s happening and I’m struggling with and asking them to help me? Thank you for the idea, I will make a list for if I get an appointment so I don’t forget anything but I’m quite scared to ask! I really also don’t want to be on any medications. When I did end up medicated for a short time they gave me allsorts including antipsychotics!! Which I didn’t like!!!
@ninjahamster can I ask if there’s anything that helps you to leave the house? I don’t want to accept that this is it forever! I much prefer a therapeutic route, I’m not really a medication person, I don’t even know why! I just don’t want to be on medication! I was under the crisis team once but I would like to avoid that for the future or ever again!
@Plethorapeach I’ve never had parents to help, well biologically I obviously have parents and grew up with one abusive one and one had left and has now died. I’ve always just tried but struggled through life doing my best and have been very good at masking and appearing like I manage like a normal person but after repeatedly hitting burnout point over and over and some more trauma added in as an adult, I now just can’t seem to get back to the previous level of functioning. I will ask chat gpt, it’s actually helped me so much this year on a therapy kind on level too! I can’t afford private therapy so just self refer to nhs talking therapies for stints every now and then when I need it but the wait lists are so long.

Thank you to everybody for all of the suggestions and ideas, it’s helping me to know what to do next. I worry that because I have the Eupd diagnosis though, I fall under that stereotype and therefore they will see me as either crazy, attention seeking or ridiculous asking for help and then I will feel even worse for having opened up.

I really can’t leave the house. I go to MH appointments and that is it. My husband takes me to them and I shake through them all. I struggle even to open the front door and put things in the bin. I can’t go to the local shop for a loaf of bread.

@ninjahamster that sounds so awful for you and I’m sorry you struggle to this degree. I’m not quite as unable to leave the house and manage to push myself when I HAVE to but am finding that that is getting harder and harder, at my worst points I cannot go into my own garden or put my own bins out but I don’t understand why! I think it’s tied more to the “delusional thinking” and paranoia. I think I also fear seeing anyone I know and having to stop and interact. I am able to be out with other people too so I don’t think they even see how much I struggle as I’m so ashamed of myself for it all. Food shopping wise I order almost everything online from places like Uber and just eat and sometimes somebody else will pick up something if needed or take me to get it. I just want to get this sorted so that I can get back to work, I used to have a job and was out in nature and doing things I enjoyed allot!

@Itwasthereallalong

I’ve never had parents to help, well biologically I obviously have parents and grew up with one abusive one and one had left and has now died

Im so sorry for what you have experienced and the impact it is having for you. It is so sad. You don’t deserve this. I hope you get the support you need. I find chat gpt really good for new perspectives too but obviously it is limited in what it can do but it is brilliant and helping organise thoughts.

It’s ok, it’s just life, it just makes it harder not having anyone to turn to or help me advocate for myself so I’m still learning! I am not sure if I should make a gp appointment to speak to the gp about this stuff, or just wait until I reach the top of the therapy wait list and speak to them about everything. I’ve tried before but get so anxious it feels like I’m going to have a panic attack so I’m even masking in therapy so I just don’t know how to do it! I am so scared to say the words “I really need some more support”. Not because I’m ashamed of needing it (although I used to be), but just because I feel like people would think I don’t need or deserve it.
I did try antidepressants for over a year from early last year to early this year and they bought me out of (another…. I pee myself off!) bad patch but I found that all they really did was dampen all of my emotions which was great for the sadness and the crying etc but it was affecting my ability to enjoy the good things properly as it was all just a bit flat and weirdly….. I actually missed being able to cry and feel my emotions properly.
I think a huge part of what I struggle with is knowing what’s even up with me in the first place because it’s just never really been explained to me properly. Which things I struggle with are linked to which “condition” and to know how to fix it so I’m just forever stuck in this stupid, frustrating headspace where I keep dipping and in the times I’m feeling ok I’m so burnt out mentally that I just can’t function properly anymore.

I made a request to the gp, the gp referred me to a mental health hub. Mental health hub says waiting for therapy is really the best course of action but also is asking gp to make an apt and thinks I maybe need medication for anxiety and depression but that trauma therapy is what should really help. I feel like I’m in a major dip. I can feel it, I know myself and I’m functioning even worse that normal, which has been very poorly for years now but I feel like I’m currently loosing my mind. I guess I have to be open to trying the medication again, and wait for the therapy. It’s now been 3 months on the wait list and it was fine waiting until this dip. I suppose on the plus side is that if I make it there during this even lower dip, at least it will be the right time.
Other than what I’ve done, I don’t know what else I can do.
I just can’t imagine another potentially 40+ years of this.