Post pandemic ‘normality’

True. I’ve learned a lot (painful lessons but I have learned something at least!). Silver linings 

One of the few positives of having done this 3 times now is being super familiar with the graded exposure approach of baby steps over a long time.

I'm sure we both have plenty of time left to get back to a better place.

Hi TriS, I’m sorry it was so hard for you, but also glad that things have improved a little for you since. Sounds like you’ve had a really rough time, and I empathise. Recovery feels so slow for me, but like you I'm seeing some improvements and I'm incredibly grateful for that. Slow and steady improvement is good :) 

I went kinda crazy again when covid started getting real, so it's hard to know how much is me struggling to get back used to life after a pandemic and how much is just struggling to recover from a total breakdown (2 really, since I had a total relapse last year that led to my autism diagnosis).

I guess I'm dealing much better with stuff made scarier by covid like public transport than I am things made scarier by my personal anxieties like eating... so I suppose I'm doing comparatively okay with pandemic stuff. Not normal person level, but not as bad as it could be/has been.

Yes - we do this. I always take the earliest appointment available. Mind you I often did this before anyway as I have always wanted to get stressful things out the way as quick as I can in the day. 

I can relate to still preferring outdoor places for a coffee and try to make appointments at the beginning of the day before it gets busy.

Hi Roy, I can relate to many of the things you write here. I love being outside, and if we eat out it’s always at outside tables now, and I’ve grown to really prefer it. I always liked to have lots of space between me and other people and because of the pandemic I feel that even more now. Like you I’m trying to reduce it a bit for the sake of my family, because even though they’re also autistic they are a bit less extreme than me in terms of they’re preference for avoiding people. Thankfully we all love being out in quiet places in the countryside, walking in the woods etc. We all hate things really crowded places and noisy people. So at the moment we’re trying to find a balance where we can feel ok and do some of the things we enjoy. For example I can’t face going back to the cinema, but my son and husband went to the cinema the other week (for the first time since the pandemic began) but they went to the first showing of the film in the morning and the cinema was almost empty. Before the pandemic we also would go to the first morning showing of films because it was quiet, But for myself at the moment I still don’t want to go to indoor things like that. As you say - I like to keep people ‘at arm’s length’ - or much further than that to be honest! I need to go to the optician as I haven’t been since the start of the pandemic (I have reading glasses) but I can’t face going. 

Hi, I haven’t read all the replies. The lockdowns were a perfect way of being. The world was at the correct pace. I am sorry so many people suffered and lost loved ones, for me it was a perfect world. I didn’t know I was autistic, when the world reopened it was when I crashed. To be honest I could live in a quiet world forever. I don’t really miix anymore, then again I never mixed much before. I do occasionally socialise but it’s more that my wife still deserves a normal life and likes to mix. We don’t watch much of the news anymore, about 10 minutes in the evening is enough, I spend that time watching my favourite train programme, yes I’m stereotypical autistic! What does help with days out is planning everything, my wife understands a lot more now and often protects me when something irregular happens.  Perhaps while the weather is nice, try a 10 minute walk in a wood or park once a day and try to increase slowly. Ask family if they want to tag along, the trick it to keep it very low key and not make it into a military operation. We went to woodland this week that has a cafe in the middle of it, my wife ordered the food and we sat outside, that was bearable and the picnic tables were set far apart. It felt okay to be in society but still kept them at arm’s length. Did the medication help from your post a few months ago? Take care.

I was in the UK through the pandemic and it felt oddly artificial to me.

The number of cases were pretty low overall and the death rate actually seemed better than usual, so the scare tactics weren't always backed up by the facts.

Where we were seeing high death rates were amongst the most vulnerable where it seemed corporate greed and incompetence were most evident - care homes that woudn't pay the high price for proper PPE, staff who wouldn't follow procedures and breathtaking incompetence from the politicians.

For any of you who have studied viruses of this nature, there is no effective way to block them with the controls we are willing to put in place - they will get through eventually. We saw this from when precaution fatigue set in, people let down their guard and the next varient took its toll.

When I was in Brazil for a few months during the pandemic there had been an acceptance of this and the "herd immunity" approach was being taken. There was the initial high death toll but then, with the majority of the population exposed to the virus, it dropped off quickly and business returned to relatively normal.

As a result of this Brazil is in strong shape now and looks to be weathering the international financial crisis very well.

Life has changed little, masks are rarely found being used and covid has fallen into the same category as the flu in terms of its presence : something you get a vaccination for once a year but if you get it, take some sick leave, get better then get back to work.

There is much less anxiety and fear around it here which leads to less stress,

At the end of the day, the death toll per capita is less than the UK which caused tremendous social stress and economic damage.

It is hard to place a value on the lives lost, but looking at the numbers and impact alone, it really looks like the UKs approach was ineffective.

Hi Queen - thank you for your reply. I agree - I think the pandemic was probably hard for everyone but for more sensitive people and people with disabilities it was much harder, and it’s much harder for us to ‘bounce back’ too. We are trying to accept that it’s going to take us more time than for many other people for us to feel…..I’m not even sure what the word is. More stable? Less anxious. Less unsettled. More safe. 
I’m sorry you’ve struggled so much with this too. I hope you’ve got loving and supportive people around you. Without my husband and youngest son (who I live with) I think I would have struggled even more. 
sending you best wishes and solidarity x 

I feel like Covid wrecked me mentally. Like you I find every day things much more difficult now, socialising and going out cause me so much anxiety and I'm actually really terrified now. I think the virus and the constant panic we were all in has just increased my anxiety to new levels that I didn't even know were possible. It sounds like you and your son are finding it similar.

I keep wanting to go back to the old norm, the norm I had got used to and lived in pretty much all my life and now I find myself in the new norm and it's not easy to live life this way. I'm constantly on edge, anxious and triggered all the time every day. I'm not surprised your son can't do college anymore, I looked in to doing something similar and couldn't even manage the open day. 

I think because we feel things more intensely than most that's why so many of us find it so difficult to cope now. The world went through a huge tragic time and quite naturally it has had an impact on the more sensitive people.

During the height of COVID (the first lockdown), I was watching all the daily briefings and reading the news an awful lot. I was basically glued to it, and I don't think it helped at all. We knew COVID was about but reading so much about it didn't help with the anxiety. I had no intention to ignore the fact it was there but I couldn't let it affect my mental health.

I definitely have been less productive and I haven't got to the stage where I am a bit more comfortable and confident, but all the doom and gloom didn't help - like you say, the "you could kill someone if you leave the house" stuff (much as I understand where it came from).

Hi Homebird, I can relate so much to everything you say. I feel a level of extra tension in so many areas of life now. I find being around a lot of people really difficult (it was always a difficult for me but the pandemic has made it much more of an issue for me). I have also developed a strong preference for just being outside in the fresh air (again I felt like that before but even more so now). If we eat out we sit at outside tables - the idea of going inside a crowded cafe now feels intolerable to me - both for Covid and viruses generally but also because I can’t bear the noise and the intensity of busy indoor places, I bristle around noisy groups of people. I think the pandemic has intensified my autistic sensitivity to crowds, noise, being in crowded buildings with all the sensory stuff that involves. It’s just too much. I basically have an even stronger need for space, peace and quiet. 
l have always hated anyone coming to the house - and Covid has intensified that too. If someone offered to come and clean my house and decorate the whole place for free I’d probably decline! I don’t want anyone coming in the house these days. Basically my tolerance for all these things has reduced significantly. I’m trying to work on all of this though, because I need to lower my anxiety and I want to enjoy my life, and not waste the time I have. so I’m trying to get back to my ‘baseline’ level that I had before the pandemic - and hopefully possibly better (one day!). I also need to cope better with ‘normal life’ for the sake of my family as all our anxiety is bouncing off each other’s anxiety and so we are trying to work together to make things easier for us all collectively. I think I’d probably happily go and live in a remote Scottish Croft and not see hardly anyone, but my son would hate that. He wants to work towards normal stuff like having friends and a girlfriend, so I’m determined to try and engage with life more, and to connect with a few people in positive ways, for his sake if nothing else. 

I’m sorry you’re struggling too and I’m sending you lots of good wishes and solidarity.

Yes, I think I spent (and spend) more time looking at stuff online which was prompted by the pandemic, and all that time online has increased my general anxiety as well as anxiety about the pandemic, vaccines and health anxiety in general. I did less productive stuff since the start of the pandemic and spent more time online and more time worrying and overthinking. I’ve not managed to get back to how I was before the pandemic in terms of my anxiety about lots of things, and my son is the same. We’ve both really struggled and are currently having therapy but my son’s therapy has barely helped him at all. I feel really sorry for younger people for whom the pandemic has happened in the formative years of their life. Imagine being around ten years old and having to process the level of threat that we were being informed about - stuff like  the groceries coming into your house needing to be cleaned in case they give you a deadly disease, or that you could kill your grandma by giving her a hug. I know a lot of people can easily move on but for some of us it’s not so easy and I don’t think it’s that recognised enough. I feel there is a lot of pressure to just ‘forget all about it’ and that leaves those of us that are struggling to ‘bounce back’ feeling quite isolated, 

Very much so. I could have written that myself. I have been trying to work out if it is the pandemic or because I realized at that time I was autistic and have been able to unmask a bit. 

I have found each step of trying to do normality difficult. I have had to go into work or join an away day on two occasions rather than work from home. At the office I was overwhelmed and glad I could return home at the earliest opportunity. At the away day after talking to a few people in familiar groups when we had to start an activity where I didn't know what we would do I couldn't cope and ended up going home.

Whenever we have anyone come to do any work at our home I get worked up knowing they are coming and exhausted after. 

Any trip out feels like a huge challenge with a lot of preparation needed. It seems I will never return to how I was and I agree that all the bad news makes things more of a challenge. I agree every problem feels like a big deal. I also miss the peace and quiet during lockdown.

I mostly do church online as I can only cope with the occasional in person. 

I recently had two weeks leave from work yet don't feel refreshed from it. Even doing the things I enjoy like gardening can feel hard work sometimes. I also find I struggle more with sleep and have to try to discipline myself to switch off.

Thank you for sharing, it is good to not feel alone in this.

I feel that way. It's like the world just became a lot more unpleasant to live in overall and it's showing no signs of actually improving. I don't believe this is just an online bubble either. 

I started using social media significantly more and I think that impacted my life quite negatively too. I think it highlighted feelings of loneliness I had which were a lot worse than I thought.

I’m really pleased that your mum recovered - that’s wonderful

I think you’re right that many of the problems we are facing now (nhs etc) we’re already developing before the pandemic. I know that many people won’t agree but my personal opinion is that Tory Governments over the last 12 years have been incredibly toxic for the U.K. 

It’s going to take a long time to improve things in the U.K., and it won’t even start to happen until we have a change of government. The change that’s on offer from Labour isn’t going to be anywhere enough to make life significantly better for disabled people and other minority groups in the U.K. (or even the majority!). 
I was a student in the late eighties and I know nostalgia can distort things but the late eighties and early nineties look pretty sweet when I compare them with how things are now. 
I try to maintain some hope of things significantly improving - but it’s not easy. 
My dream is to have some kind of political party running things who genuinely put the well being and happiness of the citizens of this country (of all kinds, creeds and colours) as the top priority. It’s possibly an unattainable dream but we need to dream don’t we?! 

So sorry you're still in lockdown. My Mum was vulnerable during the first lockdown; I can't imagine what it would be like to cope with that level of anxiety for three years.

I don't know about twenty years, but I think we become nostalgic for the past and lose sense of the reality. The 60s and 70s were turbulent decades, politically, socially and economically, yet nowadays people just think of the fashions and music.

I agree with much of this. There are a few pluses for some people e.g. work from home is more acceptable and the Tube doesn't seem as busy, but a lot of things seem harder. It's like we saw what autistic life could be like, then it was taken away from us. That said, my pandemic experience was somewhat different to others' as my Mum had cancer and was vulnerable in the first lockdown so the change to now, when she's fully recovered, is more clearly positive.

With the wider world e.g. Ukraine, NHS, I think these are big issues that would have happened anyway, although the pandemic probably catalysed long-term structural issues in the NHS.

Honestly I think it’s just a thing that autistic people intrinsically struggle with. Especially extroverted autistic people. You want to be around people and making connections with them you want to spend time with them. But it’s intrinsically harder for you to do than other people.

so you have fewer friends and fewer friend groups, But if you are just as extroverted as a normal person then you are going to want to spend as much time with those friends as you would if you had many more friends. So on one level you’re always going to be putting more emphasis on your friendships with your Neurotypical peers than they put on the friendship.

which then makes them view you as needy or attention seeking or over dramatic, as after all you only this small group of friends to turn to for emotional support over your drama.

it sucks it sucks it sucks so bad. And I’m sure it can’t just be me. I can’t be the only autistic extrovert who is desperate for a better social life