Today is not a good day. I don’t understand people who say that autism is part of them and they’d never change the fact that they’re autistic. I kinda understand that it’s hard to differentiate which parts of our personality are ‘us’ and which are there because of autism. However I swear I would trade my autism traits for part of my personality any day.
I’m exhausted by it. By the sensory overload, the anxiety, the physical symptoms. I’m pretty good at reading people now so I guess I can deal with the whole communication and social issues, but god, the rest of it I would literally cut an arm off to stop being like this.
Holidays are out of the question, (I’m just feeling too fragile at the moment to actually book something, plus with the heat at the moment I doubt we’d enjoy it) but today I booked an overnight stay at legoland as my daughter loves Lego, and we have a merlin pass (usually used at Alton Towers as that’s pretty close to us and a familiar place). A moment of bravery outside our comfort zone that I’m almost immediately regretting.
Now I’m already feeling sick and anxious about it. So much so that’s I’ve googled the cancellation policy and wish I’d taken out the cancellation waiver insurance. I could cry. I’ve just been on Facebook and seen friends with their families on holiday at the beach, in London sightseeing and now I’m feeling so low. It’s so EFFORTLESS for them. It all looks like something you’d actually be excited about, yet all I feel is that their fun lives are impossible for me to replicate. That what they’re doing would just make me ill. I went on a short break a few years ago before my daughter and I were diagnosed and spent three days feeling ill with flu like symptoms. I now know it was just to anxiety and sensory overload, almost like adrenaline fight/flight fatigue. I’m lucky that now I know I can put some steps in place so that wouldn’t happen again (not as severe anyway), but it all just seems so overwhelmingly difficult when it really shouldn’t be.
I have actual envy of my friends that all they have to stress about is the money to pay for it, booking the time off work and making sure their passport is in date. Oh how I wish I was normal (and I say that very rarely!).
I know that the night before I won’t sleep due to anxiety. When we are there I won’t sleep as I never sleep the first night in a strange place, I will be lucky if I get three hours of that half sleep, where you close your eyes but can hear what’s going on. I stress about whether I will be able to eat or will the anxiety make me feel constantly nauseous, and now I’m vegan will there actually be anything I can eat? I pray there are chips 😂. The car journey will be ok as long as there are no diversions to send me into a panic. I’m googling it like crazy so I know what the room is like, and to get a feel of the place by watching videos of it on YouTube. Maybe it would be easier if my daughter wasn’t autistic too. I’ve already booked the ride access pass so she doesn’t have to queue (it’s too overwhelming with so many people close to us we would both find it extremely stressful).
Last time I went to Alton towers, and in the first night after a really stressful day (the motorway closed whilst we were on it so we ended up stranded on the motorway for hours and had an awful detour) for the first time ever I allowed myself to stim. (Stims are things that calm us down, you may see autistic people flap their hands, tap their foot, jerk, make weird movements, make strange sounds). I never realised that when I’m mega anxious (like when my daughter is sick) I pace up and down and shake my hands. My mum has never seen me do it until then. I used to do it without realising but not in front of people. It seemed to help a bit, like I had nervous energy and it let it out. It was weird for me to consciously allow myself to do it though. I don’t think my mum understood what was going on until I explained the stress of the day meant I felt sick and was having a panic attack and I needed to soothe it somehow. She still looked at me gone out and told me I was exhausted and needed to just ‘sit down and sleep’. As I’m learning more about myself and autism I realise that there’s so many behaviours I have amended to fit in. So many things I now do and think about that are so easy for others. It makes lots of things as I grew up make a lot more sense.
What does help is to have ‘a plan’. An itinerary. This helps in every day life, to do lists really help me feel positive and get stuff done, and at the end of the day I feel ok rather than exhausted through the guesswork of the day. I think that’s why when I went to NYC it was (almost!) a stress free holiday, as we had so much sightseeing to do we had a really rigid plan to fit it all in. That is really good for me. So before Monday I will create a plan of the attractions and rides MiniMe and I want to go on and which day we will do it on. Hopefully this will calm me down a bit!
Let’s hope I continue to be brave, I know it will be a great short break I will REALLY enjoy. I just hope the experience is way better than the stress and anxiety surrounding it to balance it out.