Day to day ability fluctuations

Yesterday, I got home and did nothing. I lay in bed with the same song on repeat, thinking about the meaning of life. I was in overthink mode and had no energy to do anything.

I didn’t even have the energy to play a game on my Nintendo Switch or to pay attention to a film, and that’s saying something.

I woke up this morning with my earphones in and a phone under my pillow with no  battery. It must have been a looooong, thoughtful night.

But today was different. When I woke up at 6:30am and felt amazing.

I replied to 5 weeks worth of emails I had deferred due to not really feeling able to respond, wrote half a blog post (coming soon), plus had 2 lots of breakfast and had a bath before I was picked up at 9:05am for work. Recently I’ve been struggling to even manage breakfast.

I got home from work at 4pm and I was oozing with energy. I went shopping, went to the gym for the first time in a month and started writing a new presentation. Right now, I am effortlessly writing this whereas it usually takes  a lot of time and thought. I even managed to tidy my room today (I usually keep it very clean, but never tidy) and had time for a one man party in my kitchen which the neighbours probably heard.

Some days autistic people can have very low amounts of energy. Things that may seem easy to you like washing the dishes or making your bed can feel like Mission Impossible to us sometimes. Other days, we are like superheroes and can do anything and everything.

I’ll use my bedroom as an example. I have had such low energy over the past few months that I have felt completely unable to tidy it. It got to the point where it was an absolute mess, and no matter how badly I wanted to tidy it, I couldn’t. It just felt like it was impossible before I even started, and my room ended up looking like this:

IMG_3502

I agree – it’s horrific.

Just to be clear – I am a clean freak. When I’m at my student house and my mum can’t tell me off for using too much water, it isn’t uncommon for me to have 4 showers a day. I also sanitise my hands before I eat anything (even if I’m not using my hands) and spend a lot of time cleaning, including completely washing my phone and iPad every day. But when I have no energy to function properly – whilst cleanliness is essential, tidiness isn’t.

Thankfully, my mum took the time to tidy it all up for me about a month ago and I have managed to more or less maintain it since.

My point is, our ability to do things fluctuates from day to day. I’ve had a lot more bad days than good recently, so I have been holding it all together at work then been unable to do much when I have got home. But I have still had my good days where I have been able to be productive and super energetic.

The problem autistic people face, is when we can do something on a good day, then we are expected to do it every day. I’m sorry, but that’s not how it works. Today, I could have easily jumped on stage and twerked for the nation if I was asked to. Yesterday, you probably wouldn’t have even got a reaction from me if you slapped me in the face.

I haven’t quite worked out properly the reasons for these fluctuations yet.

I think one major reason is spoon theory (Click on the link to read about it as I cant be bothered explaining lol).

Another big thing is that us autistic people tend to overthink a lot. It feels like the worry, negativity and analysing physically drains your energy and stops you from doing over things.

Today, compared to most other days, I woke up with no worries and nothing to overthink about. I have had a rough few months after revealing to everyone that I am autistic and completely changing my life, and maybe I’ve finally got to the point that I can stop being super anxious and start being productive again? I really hope so.

It’s quite a strange phenomenon, when you feel like you are being physically drained by your thoughts. I wonder if this happens with neurotypical people too (please let me know)? I often have debates and discussions in autism support groups on Facebook, and I can feel the energy being absorbed into my phone (unfortunately, this doesn’t charge my battery). I’ve started leaving my phone at home recently while I go out and go to the gym, and it has made me feel quite refreshed.

Of course there are going to be more things that come up that cause stress, anxiety and all the rest of that rubbish, but I’m hoping there isn’t anything for a while so I can carry on being productive and useful – if that’s how I wake up. I’ll have to wait and see.

Other than the two possible explanations above, it is quite surreal and difficult to understand. Please let me know if you can shed any light on this, and then I’ll update this post.

Either way, my point remains. We can’t always do what we usually do every day. If an autistic person says they can’t do something, please respect what they say, no matter how ridiculous it may sound to you.

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9 thoughts

  1. OMG. Your bedroom!! I get it though, though our standards of ‘untidy’ greatly differ lol. I’ve always been a clean freak. I have OCD and I did go through a phase where EVERYTHING had to be cleaned several times a day in Dettol. I just don’t have the energy for that mither now lol. People know I’m having a bad day/week when I don’t put the hoover on or do the pots and if they look closely enough, they will see my hair is 90% dry shampoo and I’m wearing the same clothes a few days in a row. During exhaustive periods, other things take priority. My child comes first. I make sure his needs are met no matter how crap I feel. I also know that these are just phases while my body and mind just need to recover some energy. My functioning varies on a daily basis. Some days I can’t leave the house aside to do the school run and that takes all my energy, so when people call me highly functioning, it annoys me.

    Another good post! Keep them coming!

    Liked by 2 people

    1. Thanks for sharing!

      That is the worst my room has ever been in my life, but I’m back on track with it now 😂

      Yeah I think functioning labels are silly too:
      ‘The difference between high functioning and low functioning autism is that high functioning autism means your deficits are ignored, and low functioning means your assets are ignored’

      Liked by 1 person

  2. My daughter’s ability to do things is so sporadic; one day she’s capable of great things, the next she struggles to get out of bed. It’s so hard explaining this to teachers / doctors she has appointments with / family. So many people put it down to a stroppy / lazy teenager but that’s so far from the truth. I just wish more people would understand. Hugs xxx

    Liked by 2 people

  3. Hello I am finding these posts very interesting as I can relate to quite a lot of this. I do not consider myself to be Autistic as I am very empathic (forgive me if I am misunderstanding at all as I am not trying to say Autistic people are uncaring at all) and quite an emotional person (have just thought I am a highly sensitive person as I pick up on others moods) but I can relate to being able to do lots of things one day and hardly anything the next. I also need lots of space/alone time. I am a little confused as some of the descriptions sound a lot like chronic fatigue and I do suffer with this. I am very messy at times (but do keep things reasonably clean) but I hate being like this. I just cannot be consistent as my energy levels and moods seem to be all over the place. I have wondered if I have Adhd as I am very unorganised despite good intentions. I think there may be overlap with a lot of conditions… Anyway I can relate.

    Liked by 2 people

    1. Hi April,

      Autistic people not having empathy is actually a misconception, created by the neurotypical researcher Simon Baron Cohen.

      A lot of autistic people are actually very empathic, and a lot are much more empathic than neurotypical people too. However, we tend to show our emotion less or feel so overwhelmed by it that we can struggle to respond and we look emotionless when we are not!

      I also really struggle to keep energy levels consistent, which gets in the way of a lot of things.

      There is a higher prevalence of ADHD in autistic people, but if I’m being honest I haven’t read enough about ADHD to know what differences being ADHD too makes. Though I am also quite unorganised, I need lots of lists and have two diaries to help keep me on track!

      Wishing you the best! 😊

      Like

  4. I too get physically drained when I work at (or rather try to work out) hard maths or physics problems… I think even for neurotypical people it happens, as the brain does use a looot of energy when you use it hardcore, and so the rest of the body doesn’t get the energy it usually does, because most of the energy goes to the brain and there’s not much left for the body. (But oh well that’s just my theory)

    Liked by 2 people

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