Probably a rant - All is lost

J

JasonR28

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Apr 8, 2014
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45
#1
Like said, probably a rant but I dont know. Had an especially low week with plenty of thinking and realising how doomed my life is, not because I want it to be, but because of situations.

To roll back:

- Up to 10 years old. Tough times living with a nervous condition all my life, perhaps anxiety but overall life was a happy time, there was more good than bad. I lived at home with 3 family members.

- 10 to 20 years old. 2 family members showing signs and were diagnosed with rare degenerative illnesses. Out of 66 million people in the UK, barely 3000 people have that illness at the ages my family were diagnosed. Even rarer for 2 family members in the same tree to be diagnosed. One had a breakdown and would both verbally and violently abuse the other family member as they blamed them for bringing the illness into the house. Impossible, it doesn't work that way.
Abuse at home towards me, emotional and psychological. My opinions and views were never valued or listened to. Treated like an idiot who knows nothing. Always having the blame for stuff, if something went wrong for family, it was my fault as I jinxed it. They wanted someone to blame and it was always me.
Struggling in my own life with nervous condition, unable to make friends. School and college work and socialising didn't work out. Often people made fun of symptoms. Started becoming depressed.
Caring duties for both family members.

20 - 30 years old.
1 family member passed away. No support.
Abuse continued at home, mostly from older family member who didn't have health problems. I tried reporting this and nobody cared. If I said I was being abused, nobody cared, if I said the ill family member was being abused, I wasn't believed.
My own health was getting worse. I went to NHS services multiple times who fobbed me off. No proper support provided.
No support off anyone, I found that alcohol can reduce nervous symptoms, started occasionally drinking to self medicate and try and build a life for myself.
Caring duties for the remaining unwell family member, I couldn't move out, had to also defend them from abuse towards them.
Person causing abuse was manipulative. They would cause emotional abuse, then blame it on me. They manipulated ill family member to believe I was the problem and it was all me.

Things got so bad with constant refusal of help from the NHS, on one evening I was so desperate I reported myself to the police for something I didn't do, hoping they would come out and talk to me, listen to what I had to say and help me get support from the NHS by being on my side.
Instead they arrested me, put me on bail. I harmed myself a lot during that time and eventually they saw I was innocent and case was closed.


30+
Other ill family member passed away. No support.
Repeatedly refused the help I need by NHS services.

I've been called it all by the NHS, called obsessive, told I'm attention seeking, making excuses and burrying my head in the sand.

MIND, Elefriends, Samaritans, Bereavement therapist, an occupational therapist when I was in hospital, members of other mental health forums and even the ESA assessment staff and DWP, all understand and know the NHS should be helping me. I go to the NHS services who always play it down.

It doesn't matter what GP I see, it always goes the same way because at most I'm referred to the county's mental health trust, and it's their staff that never listen, play it all down and simply deprive me of the help I truly need.

For example.... I had CBT. It didn't work. Therapist never listened. He was pressuring me into getting a job, even though I'm clearly not well enough and he made up a load of lies. 2 weeks after CBT finished he wrote a letter to me telling lies that lots of progress had been made. A week later I went to ESA assessment with no medical evidence at all (because the NHS dont understand and wont support me), the assessment staff understood and I ended up getting 2 years in the support group.


Now:

No support. Total lack of trust in the NHS.

Other health concerns developed and I would rather suffer and die than go and see another NHS staff member because of the way they have treated me.

Self medicating with alcohol continues. I find myself hoarding my dead family member's belongings to look at and take me back to the time when I was "Up to 10 years old", a generally happy time.

Symptoms have become unbearable because the little support I did have from family is gone because of their death.

You name it, I've tried it all. CMHT, MH teams, GP's, Bereavement therapists, CBT, Meds. Complaints to PALS (AKA, a service that covers up wrongdoings. If I say I was accused of "attention seeking" it won't be noted on my file by the person who said it as they know they could get into trouble. Due to this, PALS dismiss it ever happened, rather than consider what I'm saying is true)

The only people that haven't let me down are the Bereavement therapist (Who was shocked and apologetic the NHS weren't helping me), Occupational therapist (Who told me I would benefit from their services, yet the CMHT played my problems down and refused to refer me to secondary services where I could access that OT) and the ESA assessment staff members (They are meant to be the devil right? but even they were shocked I wasn't given the help I clearly need).


What makes me so ill, worse than anything else is I know what help I need. I know how to get better. Other people, as mentioned (OT, Bereavement therapist, ESA staff, MIND, etc) absolutely agree with me. Yet whenever I go to the NHS services who can give me that help, it isn't that funding is cut, it's that these people don't listen, play down my health problem.... Even trivialise them.... and deprive me of that help I truly need.


5 years time:

If things remain as they are now, with no actual NHS help that I'm in need of, that's me finished in less than 5 years.
 
Victorianna

Victorianna

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Feb 8, 2019
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#2
Jason - It’s ok to rant! Sometimes it helps to get it all out.
I’m sorry for all the trouble you’ve been having seeking help.
What makes me so ill, worse than anything else is I know what help I need. I know how to get better.
What is it that would make you better?
 
J

JasonR28

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Apr 8, 2014
Messages
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#3
TY for the post.

The best care plan for me would be:

Access to Social worker/Support worker and OT. Of which, I either have direct experience of how they help (seeing them help my family members) or I have been told directly by said staff member that I would benefit from their help.

An OT to help me take control of my home again and better living. An OT has told me directly that I would benefit and they want to help me. Referral comes from a CMHT though who play it down and refuse.



Support worker to help me with getting out and about.....

This was backed by both the DWP (ESA assessment staff) and bereavement therapist of help I need. Also before the last family member died, their support workers helped me a bit and told me they would love to continue helping me, but can't do it unless its self funded (I cant afford it) or I'm referred to them and a funding grant is approved (Services won't refer me, as they play my health problems down).

Namely this can help me as I can no longer cope with symptoms I experience without significant distress and triggering thoughts to harm myself. It can also help me get to the inaccessible places in the countryside that would help with bereavement issues.



People within the NHS are often just so 2 faced and liars.

CBT therapist:

"Yes, I can see you would have benefited from an OT, that would have been a great help" - When asked if there's anything he can do, he said "We can't get involved sadly, it's not our place to suggest other help people may need or help them get it".

The final session: He said "Well it seems CBT hasn't benefited you at all. I do think you were right when you said in the first session about that more hands on support you need". Letter from him after though claiming I made good progress.

Which for a fact, that's purely for box ticking purposes and statistics.... I.e.... this man is cured, tick. Rather than admitting it was of no use to me, and he would have then had to have a meeting with his manager explaining why.


MH team:

Told them of my risk of being back on medication. How medication is a trigger for me to harm myself (partly as its accessible and partly as family kept saying they were going to end it with medication). Concerns were ignored, I was told I'm being "silly" and pressured into going back on meds. Went back on them, nobody to help me manage them, within a week I was in hospital.


CMHT:
Explained my concerns again about meds, told them for my own safety I refuse to go back on them. This was blamed as me "making excuses". They had falsely written on the report that I had agreed to go back on medication and would see my doctor in the next week to get them prescribed again.


I'm in a high risk group of suicide, single male, lives alone, isolated, family dead, suicidal tendencies/thoughts/wishes in family, previous attempts by myself. All ignored by teams.
 
Victorianna

Victorianna

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#4
I’m in the USA, so I don’t really know how all of this works - please forgive my lack of knowledge with the process.
How did your relatives get OT help? Was it because of their illness?
Is there anyone who can advocate for you with the CMHT? I know you say you’re isolated, but you’ve had contact with places like the samaritans, is that something they’d do?
Also, I hope you are not still self-medicating with alcohol - that’s just a downward spiral. For right now, you have to be the person who takes care of yourself, so you must be in a good place to do that. I’m not trying to be judgmental, I am just giving advice from having seen too many people go down that bad road. :hug:
 
J

JasonR28

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#5
That's ok, even though in the states I appreciate the post.

Yeah with family it was because of their illnesses on paper that instantly qualified them for it. If I had the same illness diagnosed, regardless of weather I needed the help or not, I would instantly qualify for it and have people contacting me to try and provide it.

Nobody that can advocate as the services don't extend that far (i.e Samaritans are an "in the moment" service, that don't contact anyone on anyone else's behalf). MIND would be open to doing that but there's no MIND services locally for me to access to get their help.

Sadly, I am still self medicating with alcohol as there's nothing else in life. I totally understand it could lead to serious problems like addiction and I want to change but without the support, there's just no other option.

I mean take going out, symptoms were bad enough all my life. I got made fun of, kids in the area calling me a weirdo and stuff like that. Peers and people I tried to integrate with making fun or just avoiding me. But I still had my family who at some points I could talk to and have some support from them.

With prolonged symptoms and no support, especially in the last 3 years after the last family member died, the symptoms are impossible to just sit through. They give me no quality of life at all.

I don't want to drink, I don't crave it.

It was the other day when I went out with £10 to get some bread and things in. No worrying thoughts, nothing. No intention of drinking. Yet as always the symptoms were there. Distressed before I got to the shop I spent £8 of that money self medicating.

I guess these days, even though I knew the damage it does, when the symptoms happen, I'd rather self medicate with drink than try and ride through them, end up in tears and come home to potentially harm myself.
 
Victorianna

Victorianna

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#6
Told them of my risk of being back on medication. How medication is a trigger for me to harm myself (partly as its accessible and partly as family kept saying they were going to end it with medication).
Ok, so I understand your reluctance to be on medication. And I hear you when you say you tried, and ended up in the hospital.
But you acknowledge that you are self medicating with alcohol.
So, don’t hate me for saying the following:
There are medications you can try that might help you. You can even get them prescribed in small enough amounts at a time so there is no risk of self harm by overdose.
I know you don’t want to go on medicine. I know you want to implement your plan of having an OT and social worker. But it seems you’ve tried everything, and, as frustrating as it is, the CMHT is not going to grant this, at this time, anyway.
So what I wonder is if you can THINK ABOUT medication. You don’t have to do anything right now, just start to think about it.
You see yourself going in a downward trajectory, so what can you do to stop that?
Just for my story: medicine has helped me tremendously. I had to try different drugs, different combinations - it took awhile of experimenting, with some bad experiences on some medicines - until we finally got the right doses and combinations, and now I am functional. Not perfect, by any measure, but no longer am I suicidal, or on the verge of needing hospitalization. Am I glad to be on medicine? No. Do I need to be? Yes.
So, just start to think about it. I don’t think your resistance to medicine is just you “making excuses”, you are an intelligent person, and you know what is at risk. I know it’s a real concern. But if your quality of life right now is zero, what have you got to lose by trying?
 
J

JasonR28

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Messages
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#7
I appreciate your input, thank you.

RE: meds.

Ive been on 5 different types of medication over the years. Citalopram, Sertraline, Mirtazapine, Propanolol and 1 other I cant remember the name of. I got zilch from them. The only effect at all was Mirtazapine which after taking, barely 30 mins after I couldn't keep my eyes open.

The last meds I was on, Propanalol, by then I had od'd 7 or 8 times. The GP said he would prescribe me 2 weeks dose at a time so I never have larger amounts in my possession.

Getting them was a struggle since it required me putting in a request, collecting the prescription note and then going into the pharmacy to collect them. Often staff would question why I'm having such few tablets as they would have to cut open a packet and split them off.

Those tablets did nothing for me at all (even though according to my GP, they are supposed to work like a painkiller.... fast acting... but instead of reducing pain it reduces anxiety symptoms).

After being on them for 2 months, I got my prescription and perhaps a GP mistake? They had written a full month dose. I only noticed when I opened the bag when I got home. Barely 48 hours later I was in hospital attached to an ECG monitor.


My downward slope is often due to my circumstances. I'm so alone it's unreal.
 
Victorianna

Victorianna

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#8
I’m so sorry. I wish you could get the help you need.
Do you have any other ideas of what you could do to better your situation, if there is just no way to get the home care you need?
If it gets really bad, can you do something like check yourself voluntarily into a psychiatric hospital? Or would that not even help?
I’m sorry that the system is failing you, and you have no one to advocate on your behalf. :low: