Peace of mind

Hey everyone

This isn't something I really wanted to get into, but thinking about it and having that effect my mind (trait of condition) meant I have decided to express the thoughts here.

I have aspergers/HFA with co morbids of Insomnia/ADHD/OCD and heavy trauma with shows as Stimming and restlessness. With a big help from the people on here and an advocat I was awarded support group ESA which was the option it had to be, the others couldn't be worse for this "condition" as they involve being in neurotypical environments, something iv experienced heavily as I wasn't diagnosed for most of my life so never had perspective on what was going on until now, this has literally been the only time iv ever been present in life and been able to express this, something that comes through having time and space, so for example if I don't sleep I don't have to be up for anything, or if there are issues or anxiety or a constant thought, I have time to process it organically.

The ESA letter said nothing about time or length, I know I applied in December last year, had the assessment in February and then got the letter in April. After that was a big situation with my dad being ill (which had a big effect on how I was, though I think anyone would be hit by that TBH) but away from that I cleared out thoughts and heavy stress from the whole assessment and procedure and have looked to do things how I do them. This is isnt to say things are "better" or "cured", but again it's having time and space away from environments that aren't good for me, and also naturally am drawn to things or vice versa, if I stay in all day because things aren't good I can, if I go out or have a conversation and that fatigues me for days (really can last that long), I have the time to deal with it. Away from all this I don't view it as a condition, I am "me" and it's gradually building an environment and world that works for me I guess (though that would be way too positive to express and again the issues are still there). This is a lifelong thing and is very fragile and vulnerable, there is no "adapt" or "see how it goes".

Anyway a big part of this is anxiety and thoughts and flashbacks and thinking of situations that could happen, and after about 6 months (so October) the thought happened of if I would have to go through all of it again, or what if I forgot how things were or what if I had an unhelpful Dr or assessor or whatever. This then turns into heavy stress and has caused sleepless nights and restlessness, it's actually a reminder of how things were ALL THE TIME at one point in my life, only because I was undiagnosed there was no perspective or knowing of anything different. This concern, although irrational has kinda snowballed into constant thinking, as I have learned and grown so much and would not compromise that for anything, and also dont want the effects of going through that again, it's a step backwards and as the condition is "invisible" a lot of the time, hard to describe. There's also all of this UC rollout iv heard about, which iv read is rolling out here in March though I don't know if that effects anything or is even relevant.

Have spoken with some people who have the same condition as me who haven't heard anything for years once they had the award, after all it is a lifelong thing and exactly the same stuff would be said and written, but the thought is still there and I want to sort my mind out with it, even though it's irrational it's still there and a genuine concern. Also don't want a situation where the thought of "could it be this week or next week" etc is forever in my mind. This kind of thought overload and its effects are part of how things are anyway about many things (still have flashbacks to many things in the past) but knew that I could write this here, so after a couple months of it being a feeling, I have done now.

Any thoughts are appreciated.

Thanks for your reply

My advocate said not to contact them as it could lead them to think about bringing it forwards or something, is the assumption that it will be one year incorrect then? It's not based on anything just me counting months!

Another thing I had heard is that it was to be made easier for cases where there is consistency as in it would just be the same, don't know if I have read that wrong though. This award has had a massive effect on quality of life (no exaggeration), but is vulnerable in that a change to it or another assessment would have the opposite effect, particularly now it's shown how different things have been since. This doesn't mean "better" or that the traits and symptoms have improved, just that there is time and space and I can be me in an environment that is mine (if that makes sense)

Another thing to this is that since April I have seen no doctors or medical people (I do pay for councilling). This
Isn't a problem personally as the Drs and consultants have been very hit and miss, and they are forever changing (which means that it's each one you have to start again with your backstory), but from an evidence point of view it's just the same letter used last time, which took a lot to get as the DR didn't really want to write one, he just copied and pasted notes. There's now a new DR again apparently so my appointment in October was cancelled, but even when you get one its nothing more than them wanting you to go and even at times look to discharge.

Aspergers here with OCD and multiple physical problems.. also diagnosed late, also experienced awful awful times in a NT work environment (though longer ago)...

I'm afraid the reality is the benefits system can be anxiety inducing. I've gotten absorbed with similar thoughts.. I think it's common to people with ASD to fixate on the stresses..

All you can do is, try and understand the system, but TAKE breaks from stressing about it (and reading about it on the internet!) .. take it day by day, control anxiety as far as possible using wellbeing techniques, meditation, mindfulness, if possible get absorbed in something else as a distraction.

With Aspergers, it can be hard, try and focus to the present, more than possible threats.