FOMO

I started this blog with the intention of spending 2020 giving a day to day account of an autistic persons day to day life. And then pandemic. Its not an excuse but there was no way this was happening while I was existing through that, and in many ways continue to do so. But I felt like firing this up again. Maybe because I have things on my mind.

I haven’t been all that well. At all. I began having strange smell hallucinations in the Autumn of 2019. By the time I got to do some tests in the summer of 2020 I was waking several times a night and having twitches and vibration sensations. I got clicking in my left ear. My sleep study revealed no apnea or sleep disorder but the umbrella of symptoms pointed towards possible temporal lobe epilepsy. So on a bit of a hunch, the doctor tried me on anti seizure medication and I slept through the night for the first time in nearly a year (once the dose was in my system). So I was referred to a neurologist and had a brain MRI which was normal. The waking came back as did the smells – smelling poop, vomit, burning, and other rather unpleasant things. Sometimes I would wake trembling like I was about to do a big presentation or shivering like I was freezing cold. I was sweating through bedding nightly.

I finally got to speak to a neuro in Jan 2021. It was by phone with no accessibility options and I really really struggled. The neuro was dismissive and wouldn’t look at all my symptoms, only the ones she was “interested in” so I really wasn’t able to give a full picture of how debilitating things were. I was having spells of vertigo, not sleeping more than 2 hours at a time, the smells were awful, I could hear my eyes move and I had persistent clicking and sound disturbance. I was told to walk more and keep increasing my medication and add in a tranquilliser if needed. Now, I don’t know about you but a NT mum of a 7 year old would struggle with that but add in tranquillisers and I would be completely debilitated. It felt dangerous too. By this point I was on so many medications (that I wasn’t allowed to tell the neuro about) that adding in more that would mess with my functioning seemed a very backwards step to take. I had an MRI ordered and a review for 6 months time. A proposed diagnosis of ‘at least myoclonic epilepsy’ was theorised.

It’s now 5 months later and I have been really unwell for about 8 weeks. We call them ‘flares’ – we used to think fibromyalgia but this one has been very different. No pain. But overwhelming, gnawing fatigue, breakthrough episodes of myoclonus, brain fog, and weirder things like hives and extreme redness when exposed to sunlight, the worst, most long lasting migraines ever, muscle weakness and very quick onset muscle fatigue (to the point that I can’t hold myself up). I still haven’t had my spinal MRI because they forgot to order it and I still have no follow up appointment – and I am not sure she is going to listen anyway. I’m up to 1000mg of Keppra twice a day – it always works for a few weeks when I increase doses and then they creep back in. I’m getting to the point where I am a bit scared and even doubting my own soundness of mind. I know when I had the lung clots, I was dismissed as malingering and it took a big fight to get people to understand that I wasn’t ‘thinking myself sick’. I don’t present with pain or illness in a NT way nor can I always verbalise how I feel. That is a huge barrier to healthcare.

Anyway. Back to the point which is FOMO – Fear of Missing Out. At the beginning of the pandemic everyone was buying a heck load of toilet roll. Mostly because that was what everyone else was doing. I read a great article about FOMO and that in times of stress, disaster, emergency etc, people regress in to behaviours that are not normal for them. All over the news people were buying up the toilet roll and so people began to think differently about their own buying habits…just in case they knew something the others didn’t. Its similar to wacky conspiracy theories really. That feeling of everyone knowing something you don’t.

Being chronically ill and autistic too means I get a lot of FOMO. Especially seeing everyone going back to their normal lives – down the pub, off to church, to the park. I am lucky in that my second dose is just over a week away but these are not vaccinated people and I feel really confused. Either I am too frightened despite the actual risk/non risk of illness/infection…or maybe these people are acting in a risky way? Or maybe its just FOMO. I did get a lovely invitation to see some of our closest friends when the restrictions first eased. It was absolutely lovely and they are people who know me very well and understand my ways and we have lots of shared interests. But aside from that I haven’t had contact with anyone. We have seen some family at a distance in the garden but there has been no pub invites, no picnics and no al fresco dining. The frustrating thing about my head is that I have FOMO but I simply wouldn’t go anyway until my second dose was in and established! Autistic heads are overthinking heads – the reality is people know I am vulnerable and that I have not been well for some time. They are likely respecting my medical needs. But holy moly sometimes I want to just turn down an invitation so I feel included!

Many people I talk to, and its the same in my own experience, say that their diagnosis of autism left them with fewer friends than they had previously. Throw in chronic illness and you become an anti social, unreliable, rigidly timetabled bore-fest. 10 years ago I was sitting in fields at festivals and spending my summers in pubs and clubs. Now I can just…just manage the 1 mile round trip on foot to get my son to school. Mostly out of necessity as I’m no longer allowed to drive. Which prolongs these episodes of extreme fatigue etc and so the spiral becomes vicious. As an autistic person, do I get lonely? Sort of. I crave the company of select people for a finite amount of time. I tire really easily so a couple of hours is my maximum and my meds mean I have to watch my drinking which is non existent at the moment anyway!

But FOMO is a real issue for people like me. We don’t get invitations because people sometimes assume we don’t want to go or we cant access it. I would much rather be invited and graciously decline than see everyone in photos and I have been left out. I love it when people ask how they can include me. Its usually really simple stuff like familiar surroundings or a table away from a speaker. Perhaps limiting the time we are socialising or offering me safe transport there and back again. I used to be so independent.

I am going to have to really push to get whatever this is understood. I still suspect a genetic component and looking at my mothers genetics I can see issues going back several generations that may provide some answers. But probably not with this neurologist. Had I the funds, they would be put towards private care at this stage because my family is really suffering by proxy. But, its not an option so we soldier on and do what we can. I think on the next call if she wont see me in person, I will make sure someone is with me.

I feel better for a bit of a rant there. Bear with me.