asd – Snazy

The past couple of weeks my sleep has been off the chart, and so have my dreams. Some pretty damn vivid ones, and some rather personal and touching ones. Almost like a blockage has been cleared and my brain is finally starting to process some of the things that weigh heaviest on me. That is what I like to think anyway. If that is actually the case is a whole other matter.

I think it would be fair to say that a lot has happened in my life which has gone completely unresolved, or even processed and accepted. I have always been great at shutting things out of my mind, and pretending they don't matter, or never happened. Not denial as such, I often refer to some of these events and recognise their role in my life, but then I tuck them neatly away again for years more.

I think it would be good to address some of those issues one day. From childhood friends dying young, to loss of family members. Losing contact with my daughter, and living knowing she is out there and I am missing so much. There is a lot to discuss one day...

But at the same time I don't put my behaviours down to those events. Some of this stuff is just hardwired and not in any way a creation of sadness and trauma in my younger life.

Earlier this year I spoke with the GP about my ongoing mental health, how it affects my day to day life, and questioned if there might be other factors that would explain things better than simply putting it down to anxiety and depression all the time. Most recently my diagnosis was social anxiety, because it fitted with how I felt about being around others, and being in busy spaces. But to me there was a little more to it than that. The medication I took changed some things for me, but not others. CBT became infuriating as I was being told exercises with the mind would resolve the remaining matters. It did not.

The route of investigation led me to explore ASD, and a referral was made by the GP in March. A recent conversation with a friend (now Oct) got me wondering why I had not heard anything back. Having put my sister down as a reference, I checked with her to see if she had heard anything. The answer was a resounding no.

This was all last night, and on top of an inactive morning, no notable exercise on the Sunday either, I was already on edge. The events over the next 30 mins or so just snowballed into a "complete clusterfuck" (medical term!). Needless to say I struggled for hours last night, and can feel the after effects today.
Ironically a great example of how some of my behaviours and mannerisms are simply not explained away with "anxiety" all the time.

Today, even though I am a little worn out from what felt like a night of terror, with weird dreams which felt very real, broken sleep, and frustration levels off the chart, I decided I would find out what was going on with the referral. I started to write an email, then decided I would call the surgery instead so there were no misunderstandings. With the noted from Patient Access in front of me, so I had the dates and comments, I placed a call to the surgery.

I spoke with reception and explained my situation, and was then put on hold. After a while she came back to me an explained she had spoken to her senior and it appeared that although I had been sent a form to fill out with my details, the issues I had, and who I wanted to use as a reference. And even though I had completed it immediately and sent it back.... It had never been actioned, so no referral was ever started.
Nice! Frustratingly the doctor I spoke to at the time is no longer at the surgery, so they are unable to simply carry on with the process.

So, back to square one I went. Speaking to the receptionist, I asked if I would need to do the 8am call to try and get an appointment to speak to another GP start the process over again. Thankfully I was told that I would be added to the list for the afternoon, and would be sent a text questionnaire to complete. Which I promptly received, completed and returned. Now I wait... Again.

This time I have a whole list written down, things to mention, questions to ask. I just have to hope that I actually get a call this time. If not I shall give it til after the morning appointments, and give them a call back and chase it. From here on in, I need to take control of it, and not be passive about it.

This whole thing is not about medication, recognition, any kind of assistance or benefit, unless of course there is something available that can actually help me control things a bit better. But it is about understanding myself. I think I have been through this a number of times now, but the most important thing to me is understanding, and learning coping strategies.

While writing this I have had a call back from the surgery, and been given a telephone appointment for next Wednesday. No idea who with, it's all a big mystery. But at least I have the appointment set, and have a list to work from.

At some point I really do need to sit down, maybe with a counsellor and talk through some of the stuff that weighs heavy on me. Get it off my chest, and into the relevant brain department for processing and storing correctly. Not hiding away on a shelf, and try to forget about it and "move on".

I should also try and not only understand and create ways to cope, but communicate them to others, so the support I receive is appropriate, rather than overwhelming and emotional.

Right, today has been enough of a struggle as it is, so I am gonna wrap up there. Hopefully I will have a better night sleep and have a clearer head for making more sense soon.

It was recently mentioned to me that it might be helpful to look into the realms of ASD with regards to my behaviours, and general mindset, not to mention the symptoms I have commonly discussed on this blog and with others. Fair to say this is not the first time it has been mentioned, and has been the topic of quite a few conversations with certain friends of late. Obviously we know I struggle with anxiety in general. But is that the condition itself, or simply a symptom of a bigger issue? That is the question for today.

Before I dive into that, I wanted to make note here that today in general has been a pretty shitty day. No particular reason, just generally started out on a low, and for a while went deeper and deeper into it. Snappy, struggling to focus and keep my cool, and VERY irritable. Nothing particularly on my mind, but just had no tolerance for anything at all. Noises especially today have really wound me up. I had a nice walk in the sun with Ann before work, try and get some of those endorphins flowing, then came home to relax before work. Nope, not happening, just getting wound up tighter.

After another conversation with another couple of friends, I thought I would re-run an ASD screening test I have done before. Recalling the score, I thought it would be interesting to see where I scored now. As I went through the questions, it is incredible how many things you realise "trigger" you. Reading scenarios, then taking a moment to honestly answer the question. Not the "yeah yeah I am fine", but really being honest with myself. As I said before it is nice to pretend that you can do anything, but "coping" with something is not the same as being able to simply do something.

Similar to being asked by the GP yesterday if I could go to the shops OK, and first saying "well yes", then realising I shop at off peak times, generally prefer smaller stores, always use self checkout to avoid interaction and so on... So, nope, I CAN go to the shops, but it is NOT easy. So today answering the questions on the assessment I thought I would allow the same thought process to take place. I learned something for sure! I am NOT OK !

By the end of the test, I scored quite highly, well into the "severe" score range, and displayed multiple strong signs of ASD. Then to the "what next" section. Well of course this was done on a private companies website, so there were places to enquire, but also some helpful pointers on who to speak to and where to find help. Like I say, this is not the first time considering ASD, so I have some ideas of what is out there. The wait for the NHS last time I checked was somewhere in the region of two years for assessment. While private clinics such as this one have much shorter waiting lists, but come with a price tag of around £2,000.

So now I am left wondering what to do next. The idea of ASD is not a simple and convenient one for me. But as I have said to others in the past, the more I have learned about it, and the more I look back over my life, the more it would make sense. Will it change anything, not really. I am not looking to "cure" my anxiety as such, not turn my life around. I like who I am, and how I live, label or not. But it would answer some questions I have asked myself, especially about my upbringing and earlier years. It would help me convey to others what I struggle to do, why, and what they can do to help me. And of course it would make me cool.... OK I am lying about that one, but there is nothing wrong with knowing what is going on inside the grey matter.

Like I say, it doesn't change anything fundamentally for me, life goes on. But it helps with the frustrations of life when you struggle being on a busy train, around strangers, or some days just want to be left alone for a bit. Like today. Not to an extreme, but it has taken me a few hours of being at my desk working to start to feel balanced in any way. The first couple of hours, trying to do quite simple tasks of comparing data fields on documents, focusing on an issue to resolve it, or just typing in a phone number required exhausting amounts of concentration. To a point of "arrrgh I can't do this" and wanting to just call it a day. Moment like that are usually the catalyst to a much bigger and longer episode. But thankfully in the peace and quiet of an office, on my own, I was able to work my way through it, and feel much better in my mind this evening. There is hope!

Using today as an example, this is what I was trying to touch on yesterday. An anxiety disorder, triggered by stressful situations, being in an uncomfortable environment is one thing. However today was not triggered in any way. I slept OK, and simply woke up feeling like I needed space, fresh air, and some time out. So there probably is more to it than straight forward socially triggered anxiety. And with that in mind, that is why I was so torn about starting the medication straight away, or waiting for some more questions to be answered, and more things to become apparent. If I had started the meds yesterday, one of the side effects is heightened anxiety for a while, and today would simply have been put down to that, and nothing else.

Instead, I have had the head-space to consider opinions of others. And that is actually quite important. To have the honest and frank opinions of others, as it is so hard to see sometimes how your behaviours actually appear. From time to time I will catch myself acting differently due to how I am feeling, but most of the time it is more likely others can tell you more about your behaviours than you can yourself. So I am very grateful to have such people around me, and encourage anyone who thinks they have something of benefit to say to let me know. No offence will be taken I promise. Unless you are being a bit of a twat, in which case, expect as good as you gave.

So now with the test results, the comments and opinions of others around me, some of whom are in a very educated position to form such opinions, when I see the doctor next I can raise the question of ASD screening, without feeling like I am clutching at straws, searching for a label, or just trying to find more and more excuses as to why I should continue to work from home. Where it goes from there, who knows. I am sure there is a long long waiting list, and one which will not be in my favour with work related matters. However at least having had the conversation and been referred for screening, or indeed considering paying to go the private route may help in all walks of life. Time will tell.

Thanks as always for reading a long ramble, and a special thanks to those who have taken the time to reach out, share their thoughts and opinions, and give me a little bit of hope and direction.

Til next time...