Published on 12, July, 2020
Hello, so maybe someone here can help me and give me some guidance. Hopefully this is the right place to most but I am completely new to posting on forums as really I just don't know where else to turn too.
So first things first I was diagnosed with aspergers last year so everything is still pretty new to me and I am still trying to understand everything.
So basically since I was about 15 I have been battling with depression and anxiety and trying to get support on the NHS is getting harder and harder for me.
My anxiety and depression has gotten so bad i'm at the point I don't bath or change my clothes for months, constantly have negative thoughts to the point I just feel terrible every day I have little or no energy at all to do anything. I am tired all day every day. I don't leave my house unless I go somewhere with my parents. I don't have friends, I literary have nothing in life. My anxiety is now at the point its really effecting me. My anxiety causes me so if something on that day is causing my anxiety lets say an appointment I won't eat, my anxiety will cause me to make me physically sick. When I have something that is causing my anxiety I can't settle I can't do anything it really makes me tired. Its at the point now if the door is slammed which is normally due to the wind and the door itself been lose it causes my anxiety is going off. I have now started to have issues with medication that I have been put on, I can now only be on oral solutions as my anxiety gets so bad about taking tablets my mind will manifest side effects and its at the point I am terrified to start any new medications because of this.
So lets start my doctor refereed me to an assessment team in December and only last week I got an appointment and no one there apologized or told me why it took so long for them to give me an appointment. Even the assessor told me "I don't know why it tool so long for an appointment". So had the assessment and it feels like we are going in circles they are looking to offer me a support worker to take me and out and do the whole graduated exposure but I have tried this before and really struggled with it to the point I was discharged for not making any progress. (also the whole assessment wasn't even with someone who does assessments for working age adults he does actual adults so yeah).
In the letter they sent me with what plan they suggested there were suggestions about discussing residential cares or day centers, But my issue is in the letter they didn't say how we were going foward. Who is going to see me to discuss this or tell me about anything that will happen about my care. I have gotten no time scale about what is going to happen, How long it is going to take me to get support. I consider myself to be in a pretty serious place with my depression and anxiety and it feels they just dont take it serisoulsy. Someone like me with pretty serve mental health problems should not be waiting a long amount of time to get support. Its not even support its just even a small knowing about how long I will be waiting and what will even happen.
They even said on the letter they are going to refer me to specialists but they didn't say who these people were. My doctor even called them up and asked about what is going on and when my doctor asked them what specialists they were talking about they turned around and say they didn't know who these specialists were.
I have an appointment with a psychiatrist Friday which im terrified about and is causing me so much anxiety. But on the letter it said the appointment with the psychiatrist is just for a medication review, I know what will happen in this appointment the psychiatrist is just going to give me a list of medication to try and ignore the fact I have huge amount of issues when it comes to starting new medication. I am on a anti depressant at the moment which I am terrified to come off and I worry this is the only thing that is keeping me going. I am left wondering so what support I am going to get and what am I meant to do in meanwhile.
Like I know there is a lot of information here and I would really appreciate if anyone could give me any sort of advice or any sort of ways I could get better information from these services.
I thank any advice in advance that anyone can give me.
Here's another thought, self-help groups:
https://www.mind.org.uk/information-support/guides-to-support-and-services/peer-support-directory/
There are no expectations of anyone who turns up, and they try to be friendly and welcoming. I'd understand if they're too daunting or of little interest, but just thought I'd mention it.
I’ve supposedly been on CPA since 2016, but I don’t have a care coordinator and I’ve still not had any help from mental health services (only assessments from various different teams at different times).
I absolutely agree with your comment about the psychiatrists. In my opinion, dealing with mental health services in general is like banging your head against a brick wall, aside from the fact that I would consider the latter less damaging. That says it all really...
Distraction is a useful technique, sometimes called 'brain switching'. Maybe ADs make it easier by slowing down thinking, but I've never had any luck with the five or six I was prescribed.
Yes, I hope so too. Social workers vary a lot too and are now rather too concerned with rationing care (again, in my opinionated opinion) - the idea of a care co-ordinator would be it would be the same person, who you had a rapport with. Good luck, anyway. It almost certainly will be better than you expected. Taking a list of what you need may have an influence.
The issue is with taking it more slowly at the moment there is nothing in my area that will take the long time and investment in doing graduated exposure over a much longer period. I had a social workers in the past but they really made my anxiety a lot worse. They never showed up on time and never sent the same person to me. One of the social workers as well said to me "depression is something you just get over". so that whole experience has really put me off social care.
I mean I don't have issues with saying whats wrong but it does feel that they don't listen. I am going to hope that maybe with the appointment they do but if not I will make another appointment with one and take someone with me. Hopefully this appointment Friday they will be more understanding then the ones I have seen in the past.
Hello, NAS17810
It sounds like you don't have a care co-ordinator (key worker). Partly because you can't at the moment do some things for yourself, partly because the interaction with services is itself causing you anxiety, and partly because being autistic you may have certain needs for advocacy and explanation, it could be argued that you should have. Here's an article on CPA:
https://www.nhs.uk/conditions/social-care-and-support/care-programme-approach/
It's a shame graduated exposure hasn't worked. Maybe try it more slowly under your own control?
Psychiatrists are a waste of space in my experience (not to mention money). But a lot of staff still take them seriously, and they take themselves seriously. What they should be doing is taking you more seriously than a medication issue. Have you got anyone who can go with you? If not a family member, then you might be able to contact local advocacy services (although not before this appointment).
Hi Song,
It doesn't so much make the negative thoughts stop as create a barrier, or slow them down & muffle them. I've tried describing it to my Doctor, therapists & other people I know in a variety of ways, including "like stuffing cotton wool into my head" which sounds awful but isn't.
Previously, I also used to have a problem with particular very negative thoughts bouncing round in my head for days, like a bad advertising jingle. Once the idea entered my head, it was almost impossible to dismiss & would usually only disappear after a good night's sleep. Now, the anti-depressants seem to allow me to use a form of deliberate selective amnesia.
If I suddenly remember something horrible from my past, I can get rid of it by distracting myself before it takes hold. It's a bit like that common sensation where you go into a room to get something, but can't remember what it was. As long as I don't try to force myself to remember again, the negative thought is gone again until the next time it is randomly triggered.
Not sure whether this experience of anti-depressants is unique to me though, since although they are also used to treat OCD, that isn't quite how they are supposed to work. My Doctor says that it might be because I am on the Spectrum though, since that changes all the rules in unpredictable ways.
Pirate Santadoes the venlafaxine make the noise stop for you? It isn't stopping the noise in my head, I wish I could find one that helps,, there was one that stopped it for a week or 2 but that was all, the silence is wonderful isn't it.
I've been on a four different anti-depressants over the last five years, one didn't seem to work at all for me or even make me worse , whilst others worked for a while once I got the dosage right, but then burned out & stopped working almost entirely. Switching between them has been fairly easy for me so far, once I had persuaded my Doctor to try something different. Whenever I have switched anti-depressants, this has usually involved tapering over a couple of months where one drug is gradually reduced as the replace is gradually increased. I haven't ever had withdrawal symptoms when switching so far, since they have all been either SSRIs or SNRIs & I think the incoming drug, compensates for the withdrawal from the outgoing one.
I know quite a lot of people on anti-depressants from mental health support groups that I attend & it's odd how much variation there is in the effectiveness of particular drugs on different people. It's all down to unique brain chemistry though, so what is a life-saver for one person, might actually make another person feel worse. Finding the right one for a you just seems to involve having a good relationship with your doctor, as well a certain amount of trial & error. Each attempt to switch takes a minimum of six months though, as it take a while to properly acclimatise to a new drug, before you can assess whether it is working or find the right dosage.
Currently I am on the SNRI Venlafaxine & have been so for the last 18 months. In the post above, you mention constant negative thoughts, which has also been the main cause of my depression as they can get so loud that I can't hear myself think. None of the anti-depressants I have taken seem to have had any effect on my 'Mood' at all, but when they work have dramatically reduced the amount of negative & intrusive thoughts. I can still remember the first time I noticed this effect five years ago. I woke up one morning & was suddenly struck by how quiet it was inside my own head. When I am on my own, I can still have quite a lot of negative thoughts, but it is easier to distract myself by just keeping busy or by playing computer games.
I hope you manage to find the right medication to help you deal with your anxiety, depression & negative thoughts. Although I am still struggling quite a bit at the moment, the anti-depressants make life much more manageable.