How And Why Am I Still Going?

It’s been one hell of a day so far,
Fifteen hours, it’s taken me,
Just to get to lunch;

There are too many days like thisβ€”
Where I’m fighting lethargy,
Fear at leaving my room and facing the mess,
Then the anger, and cleaning which I must do first,
Then cleaning the bathroom again if I forget to lock it from the outside,
And the exertion which causes me to sweat,
Which means another shower later, because it aggravates the eczema;

The housemate who got back from Portugal,
As well as always leaving a mess in the bathroom,
They’re the one whose room is above me,
With the terribly-creaking floorboards,
24/7,
β€”There is no peace from it, without my own measures;

All of this stress, and the anger,
Is very exhausting,
Besides doing the daily tasks,
And the OCD and repetitive body tics which the stress inspire,
All very exhausting,
Just to keep my head above water and survive another day,
For no purpose because no progress has happened towards fixing anything;

I’m not really interested in knowing whether things will eventually get better,
Of course they will,
I’m increasingly concerned at the amount of time it will take to get there,
And increasingly anxious about my ability to put all of this behind me;

I’ve really been feeling badly for the last week or two,
Had a big downturn in mood and optimism,
I’m getting too tired to continue in this way,
And dissociation is increasing,
Which prevents me from enjoying anything;

But, there was some glimmer of hope today,
β€”One of my wordpress friends, on a video call,
Suggested asking my family to pay for some private diagnoses;

The money is definitely there,
But it had never occurred to me to expect them to do it,
β€”My parents stopped helping me out with money the day they locked me out of the house,
In January last year;

They later resumed, after two terrifying weeks,
And as my health worsened, those costs only increased;

Man I have come so far already,
And I will never know just how far,
Until I’ve finally regained stability;

For all that I’ve discussed my traumas,
And challenges,
I’m inevitably downplaying it, because I’m still in it;

However, a brother has recently offered to help,
So I’m going to get a message to them all,
That if they’re reading my poems and genuinely interested in helping me get out of this horrible mess,
Then private assessments for autism and OCD are the way forward,
And my only option;

Those assessments and diagnoses are the key to moving forwardsβ€”
They vastly strengthen my PIP application,
And obtaining the PIP allowance is in turn the key to getting relocated,

Which is itself the fundamental basic necessity on which all else is built;

I gave up on asking people (especially family) for help a long time ago,
The sad fact is,
That I’ve received a lot more help through not asking for it;

After so many attempts at reaching out to people,
To the healthcare system,
And ending up so alone and left to fend for yourself…

You stop asking;

However now I am optimistic that they would do this for me,
Which needed to be done a long time ago,
And it took me having such a good friend whom I can discuss these things with,
β€”It took that conversation just to get the idea,
Which is itself fairly obvious;

And now that I’ve got the basics of the day out of the way,
Now I can sit down to make some progress with thisβ€”
Send out an email inquiry to the online psychiatry service which diagnosed the ADHD,
All of those two years ago;

I have faced so many challenges and obstacles today,
It took such an effort of will to get to this point,
And this was a single day;

But I do now see a way forward,
Towards my eventual goalβ€”
All I want to do is to dedicate my life to helping people in situations like mine,
Especially those also struggling with the complex difficulties and needs,
And pure lack of understanding,
Which are so typical for people with autism,
And god I have to help to improve that situation,
That’s the only thing which keeps me going,
Because this is not fucking acceptable.

πŸŒͺ

32 thoughts on “How And Why Am I Still Going?

  1. Yes if your family can raise fund for the assessments, the allied health reports will likely support the PIP assessment scoring. Once you are granted the PIP, then more chance of being prioritised in public housing independent living.

    Liked by 2 people

  2. “Because this is not fucking acceptable”.
    No it is not and you deserve every bit of happiness in this world. You are an amazing person and friend.
    β€οΈβ€οΈβ€οΈπŸ™ŒπŸ™ŒπŸ™Œ

    Liked by 1 person

      1. Thank you Cassa was able to talk to me just after I said that

        Like

      2. I was about to say there was no one to talk to, as I had no one to talk to for a few hours

        Like

      3. I really struggle with having anyone friendly to talk to in those situations

        Like

      4. I actually only have one person I have phone calls with β€” Cassa. I’m so limited. I can have a video call with her and it helps so much. Having to talk to someone random over the phone through phoning the police or 111 or whatever is just even more stressful.

        I have a few other people I can sometimes talk to with text chat, but that’s it.

        Like

      5. Anyway I feel a lot better now after talking to Cassa. And the NHS person I spoke to said I should get a phone call from the mental health hospital at 9 and I might be able to have an appointment there later.

        I was doing well and about to do something really positive at 12, but this whole thing was started from going in the bathroom and seeing such a mess in there again, and I was screaming my head off and slamming doors πŸ€¦β€β™‚οΈ.

        Honestly my plan from now on in that situation is I’m just going to get to the mental health hospital and wait to see someone each time. Because the time outside on the scooter will really help as well as racking up records of screaming for help… πŸ€·β€β™‚οΈ

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      6. Sorry I couldn’t reply to you straight away. I was actually typing a response when Cassa called me back. Before that I was just lying there for ages.

        Like

      7. Everything has suddenly got sooo much harder since that housemate came back, as I knew it would.

        Liked by 1 person

      8. Oh Robin, I’m sorry you had such a tough night.

        But I’m really glad you got to talk to Cassa – sounds like she helped immensely.

        I hope you get that appointment at the hospital today too. You really do need their support and they really need to give it.

        I hope today is a better day for you.

        Much love πŸ–€πŸ–€

        Liked by 1 person

      9. I can’t last much longer. Thing is none of that makes any difference as long as I’m still here. It is all undone the moment I go into the kitchen or bathroom

        Like

      10. They are now leaving the backdoor open 24/7. Why ? Who knows. I can close it multiple times and it’s open after the next time someone smoked

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      11. I will keep phoning the duty number at the hospital as they told me too and do these private assessments and I will be making so so much noise every day now. It’s a life or death situation every day it’s that serious

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      12. Keep calling them absolutely –
        and the woman who was helping you with your housing.

        Can you Google agencies that support people with mental health issues near where you live? Maybe your local council’s duty social Work team can help?

        You’ve most likely already tried all these but it’s all I can think of for you just now.

        πŸ–€πŸ–€

        Liked by 1 person

      13. Thank you Charmer!! πŸ™‚ I appreciate the suggestions :).

        That callback from that team today… that was one of the first times I can remember in a long time where I had a call like that, which was largely empathetic and wasn’t ending in a big ‘but’ which put me right back where I started. Because the tragic thing is most of the time I’ve just been bounced between organisations or having them tell me something is impossible. So the idea of having a positive response to me calling, and encouraging me to call again… honestly that was quite novel.

        A charity actually called me back just before the CMHT didβ€” whom I had a phone assessment with 2 weeks ago. So that’s one mental health charity who will be helping me now. And I had another one suggested to me today, which I am going to look into as well.

        Actually about googling, I keep finding that a lot of mental health charity services here… they’re really hard to discover online sometimes! I’ve found these word of mouth suggestions to be more effective. I dunno how much of that is my brain not working in the moments I’m inspired to look for them… πŸ€·β€β™‚οΈ

        Anyway, I definitely have enough to keep busy with now and make progress with :). πŸ’™

        Liked by 1 person

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