Returning to the World

Returning to the World

This week, I went back to work. I negotiated a phased return so I’m only working Mon, Wed, and Fri for three weeks to see how my body responds. One week down, two to go.

So how has my first week been? Exhausting, and painful. Like, really painful. More than I was expecting. I have three different kinds of co-codamol, strong (30mg/500mg), medium (15mg/500mg) and weak (8mg/500mg). On Monday I took 2 medium tablets in the morning, 1 weak one at lunch time, then 4 strong ones in the evening. By Friday I was taking 2 medium in the morning, 2 weak at lunch time, 4 strong in the evening and chase with 2 more paracetamol. On Tuesday and Thursday I was scared to go back because of that pain that I knew would follow. But I did it, and will continue to do it, because my body won’t get used to it if I just stay home all the time. I bought a blood glucose monitor (to be arriving today) to help me monitor my levels and hopefully adjust my diet even more effectively. It’s something I’ve thought about before, but now it’s even more important that I get on top of my health as quickly as possible, and I’m a believer that the more data you have, the more power you have.

That’s how it has been physically. Emotionally, it has been nice seeing all the old faces, and being back in the lab where I belong. It’s frustrating, knowing that I can do things but not being able to do anything because of the strict rules they have around being officially trained before you’re allowed to touch anything. And the only people who are ‘trained to train’ are so busy with their own work that they’re struggling to find time to train me. That’ll happen over the next couple of weeks though, and I’ll get through the training quickly because I already know how to do it all.

I have noticed some interesting autistic things though that I wanted to mention though. Most predominantly, I have noticed how bad my auditory processing abilities are when there are background noises. In the lab we have several bio cabinets which have built in fans to create a constant airflow. These create a low hum, alongside the whooshing of air. There is also, always, a radio on playing music. The first few times someone tried to speak to me, and I couldn’t understand a word they were saying, I instinctually looked to their mouth and asked them to repeat themselves. When I’ve struggled to understand people before, I have found that watching their mouths form the words helps me to process what they are saying. Only now, of course, everyone is wearing a mask, so their mouths can’t be seen. I found that this tends to send me into a small panic, not knowing where I should look, and actually makes it even harder to understand what is being said to me. I’ve since decided to look at them when I ask them to repeat themselves, so they know they have my attention, then stare at the floor or wall with one ear turned in their direction. This seems to be the best way to internalise the information they are trying to give me. I have wondered what this must look like to people but, if it’s what I have to do, then so be it.

Another thing I wanted to address is masking. For those who don’t know, ‘masking’ is when an autistic person “pretends to be normal” in the presence of neurotypical people. It can be exhausting but is something that we are taught to do from a young age “to fit in”. Now, I always knew that socialising was tiring for me, and that I was always conscious of the things I said and did so as to not seem “weird”, but I never considered those things to be masking. I always thought that everybody did that, and maybe they do to some extent, but since going back out into the public after being free to be my uncensored self for over a year, I have noticed the physical restraint it takes for me to not do certain things. For example, sitting still and straight in my chair, in stead of spinning side to side or crouching in it. When I found myself alone in the lab, I started talking to myself and the equipment, then panicked when I heard someone come in, because I didn’t want to be caught doing that. And a couple of times I have almost done my vocal stim (a low, throaty, croaky, hum) while I was in the office. It took real force to stop that one coming out. So I guess masking was more ingrained in me than I thought, and now I’m out of practice.

The last thing is small talk. I hate small talk and am not really good at it. I’ve only been back for 3 days, and the amount of times I’ve had to answer the questions “How is it being back?” and “How was your wedding?” is overwhelming. Of course the simplest thing to do, would be to just answer the same way every time. Except I hate repeating myself, so I’m always trying to come up with new ways to say the same thing in stead. I’ve never understood how neurotypical people enjoy having these same conversations over and over again, and often they don’t actually mean what they say or say what they mean, they just choose from a list of prefabricated responses. It’s almost like watching two AI characters interact in a game. So, being the unique snowflake that I am, I avoid using the ‘correct response’ as much as possible (it actually makes me physically uncomfortable). But that means that I either end up staring blankly at the person, not knowing how to answer their question, or I say something honest which is often misinterpreted as rude.

A perfect example of this is “How are you?”. The expected response is “I’m fine, how are you?” but my brain always falters here. I know that this is used as a standard greeting and that the person asking doesn’t really want to know how you are, but then why ask the question in stead of just using a statement greeting like, “Hello” or “Good morning” or if you want to be interesting, how about “Howdy”? This is usually the blank stare part for me as I try to decide on a response. Then I’ll usually pick my most prominent feeling at the time (more often than not, ‘tired’ or some variation) and say that. I don’t frequently ask the question in return (which people often think is rude or self-centred) because I know I’ll most likely get another standard response or lie. Besides, if someone wants to talk about themselves then they will, even without an invitation.

One week down. Wish me luck for the upcoming weeks.

Using my public platform as therapy (again)

Using my public platform as therapy (again)

I had my second jab (Pfizer) on Friday. It was fine. My arm was killing me for a day and I felt slightly more fatigued than usual, but that was all. Now I have no more excuses to stay home. After 1 year and 2 months of being almost exclusively confined to my home, I now have to re-join society.

I’ve spoken to the HR rep at work and we have agreed to a phased return (starting with 3 days a week until I feel able to do more) beginning on May 10th 2021. I am terrified.

I want to specify, I’m not afraid of the virus. I mean, I am, but only mildly. I have faith in science, in my workplace, and my colleagues to keep me safe. I think my chances of catching the virus are slim to none. What I am experiencing is a generalised anxiety that I haven’t felt for many years. It’s a fear of being away from my safe space and of facing the unknown. This is a fear that I have faced before, and has always been a part of me but, with practice, I was able to ignore it and live life anyway. But I’m very out of practice, and the idea of my home being my ‘safe space’ was intensified by the fact that people are literally dying by the million outside. So the general anxiety has become more akin to a phobia.

Problem solving time. I often talk about having two brains. I have an emotional, irrational one, that feels all the things with or without reason, and I have ‘Logic Brain’, who does all of the thinking and rationalising. When I was young, Emotional Brain was in charge of everything, and would shut up Logic Brain with “If that’s true, then why does it feel like this?”. As I grew up, I thought that the goal was rid yourself of the irrational feels by logic-ing them away (turn the light on to prove to yourself that the shadows aren’t real and can’t hurt you). Now, as a psychologically mature adult, I realise that neither brain is more right than the other and that communication between the two is key.

Therefore, the first questions are always, what are you feeling and why? The first one is pretty easy, fear and anxiety. The ‘why’ is more difficult. Logic Brain tells me that there is nothing to fear, nothing that I will encounter will harm me, and I am not in danger. But that doesn’t help, never does, never has. When I’m struggling to pinpoint the cause of my fear, I run through the scenario in my head and pay attention to which parts trigger the fear. When I think about the work, I’m actually really excited and looking forward to it. It’s what I trained to do and I love it, and even though it’ll be unfamiliar work to me, I love learning, so that’ll be fun. When I think about seeing the people, some I will have worked with before, some I will have worked with remotely but not met in person, and some will be completely new. I’m not a fan of socialising and meeting new people, but I know the atmosphere of the company is a friendly, respectful one and it will be nice to be able to mix with people who share my interests again. It turns out, the things that are scaring me are; getting to and from work, how well my health will hold up (i.e, how painful will it be?), and having nowhere to retreat to if things get too much. So let’s unpack these, shall we?

Number 1. Getting to and from work. I had planned to be driving by now but, long story short, I’m not. I used to get the bus(es) into work, but they are now at the bottom of my list, partly because lots of people in a tin box is a breeding ground for all kinds of things that can kill you, and partly because I had to get up at 4am to get to work on time, and that will negatively effect fear number 2. Currently my plan is to carpool with a fellow employee coming from the city. If they are unwell or unable to make it for some reason, then a £40 Uber is my backup plan (app downloaded and addresses saved and at the ready). It’s not ideal, but it’s a stop-gap until I’m able to drive myself, which is the official plan.

Number 2. My health is not as bad as it could be, but by no definition is it good. It won’t hinder me in doing my job, I have struggled through Uni when my health was much worse, but I am afraid of pain. I can take painkillers before, during and after work, but they only take the edge off, they don’t rid me of the pain completely. My best defence here (besides the painkillers), is to adjust my diet and adhere to it strictly, rest as much as possible when I’m not at work and, don’t be a hero, ask for a chair if there isn’t one. Experience has taught me that I will get used to the extra activity, as long as I care for myself properly.

Number 3. This is another thing that having a car would fix. Sometimes, being around people and noise and smells and places gets too much for me and I need to retreat to a confined space that is silent, where no-one can see me. Usually, this would be a bathroom stall, but I’m not sure about the safety rules that have been put in place regarding toilets in the building. This is something I will need to look into, but stairwell is also an option. Solutions to this problem require extra research, but it’s not information that is difficult to get hold of, and I can definitely prepare for this beforehand.

So there we have it. Emotional Brain has calmed down a bit because instead of telling it that there’s nothing to be scared of, Logic Brain had put plans in place to ease the fears. The anxiety is still there, but it’s less, and over time, with repeat exposure and further developments, it’ll become pea sized and manageable again.

Thanks for helping me with my therapy today. I hope you’re all well. :smiley face emoji:

Everything Happens for a Reason

Everything Happens for a Reason

I am a person who believes that everything happens for a reason. I have to with everything that has happened to me. If I didn’t then the universe is just cruel and unfair and what’s the point in struggling against the tide? But in stead of hopelessness, I chose to believe that, although I may not know why, and may never know why, the things that occur in my life have to happen in order for some other event to happen that creates balance in the universe. This belief brings me peace of mind and allows me to carry on trying when everything is telling me to give up.

5 years ago I went back to college to do an Access course so I could go to University. Halfway through my college course I got a very severe flu-like illness and never fully recovered. I got M.E. I was still able to complete my course (just about), but was unable to get the work experience required for the University course that I wanted to do. I was rejected from all four of my University choices and left pretty distraught. I was on the verge of giving up when my favourite University offered me a place on a different course. It wasn’t what I wanted to do, but it was close and it could lead me to what I wanted to do, so I accepted and went to University.

1 year of that course and my health had deteriorated to the point where I was almost completely bedbound. I was still managing to get the work done (and was getting good grades) but my tyrannical course leader said that if I didn’t show up for class then I would be kicked off of the course. If I was kicked off of the course then I would be kicked out of my campus accommodation, making me homeless. I somehow managed to get a meeting with the leader of another course who said he’d be delighted to take me on. I ended up loving that course and that department and they supported me with my illness so I was able to graduate this year with excellent grades.

If I had been accepted onto the course that I originally wanted to do then I wouldn’t have wasted a year on a terrible course and I would have graduated last year and been in work this year when the virus hit. And what was that course that I wanted to do? Child nursing. Yep, if I hadn’t gotten M.E, I would currently be a Nurse in the NHS right now.

Just saying… everything happens for a reason.

Livin’ on a Prayer

Livin’ on a Prayer

Firstly, apologies to my followers who have had to wait twice as long for this post. I was awaiting some good news to share with you all (for a change), but unfortunately that news hasn’t come yet. So, I’ll talk today about university in stead.

I’ve just finished my second week back and although I love being a student and have enjoyed my classes, I’m still terrified that this pace is not sustainable. This past week has been a particularly stressful one and I feel as though a crash is inevitable, it’s just a question of when.

I attend university three days a week. Two of those days are half days (9-1 or 11-3) but the last day is a full 9am-6pm. Over the summer I also moved home so I no longer live on campus and have a 2 to 2 and a half hour commute each way, depending on traffic. This means that every Friday I have to get up at 5am and I don’t get home until past 8pm. My days are spread out across the week, Monday, Wednesday and Friday, but second year expects much more from us than first year did, so even on my days off, I feel like I’m not able to fully rest since I have studying to do, not to mention the few household chores I can do and keeping on top of my general health and hygiene.

I’ve also recently begun to worry about what I’m going to do once I finish my course. I won’t be able to hold down a full time job, but who ever heard of a part-time graduate position? Sure, if I already had a job I could negotiate a reduction in hours but how am I supposed to go into the job market at the same time as the rest of the UK’s graduates and convince a company that they should take me on even though I can only do half the work of their other candidates? And the kind of work I want to do is not the kind I can do from home. I mean, there’s always paperwork to be done and I could probably take that home with me, but lab work needs to be done in a lab, under carefully controlled conditions.

So in conclusion, I am stressed. I don’t know if I’ll make it through uni and even if I do, my career prospects look bleak. I feel as though the best I can do is just keep plowing ahead and hope that I find some treatment that allows me to live a half-way normal life.