Hello – It’s been so long since I posted anything for a number of reasons but mostly because of demand avoidance (well there’s a surprise!) but also time and the fact that I couldn’t think of anything that I considered worthwhile to talk about! A little bit of background is needed so I don’t confuse you all. This post was originally written whilst I was away giving a presentation on PDA back in July. I had planned to post it the day I got back but demand avoidance again put a stop to that. Even though it’s ‘old news’ now I still feel that it’s important to share as I think it highlights the most misunderstood and forgotten part of PDA and that’s meltdowns. I shall sum up at the end but for now enjoy…..
Wednesday 13th July 2016, morning
Well, I’m currently sat on a very bouncy train as I write this – not easy when you only use an iPad! Lol. Anyway it’s entertaining me….like when you try and apply makeup in a moving car! All good fun and also good for honing those fine motor skills. 👍 So where have I been? Where am I going? And why isn’t Paul driving?!
Well, I’ve been away in Dover for the past few days giving a talk. I had to take the train (although trains would be more accurate!) because Paul was away at RAF Fairford working for a week so I had to fly solo, pardon the pun! Lol. 😂 Anyway why am I writing this post now? Well if I’m honest it’s a combination of boredom and inspiration. I’m only 30 minutes into an 7/8 hour journey so I need to keep myself entertained but I’ve also been hit with a wave of inspiration: anxiety in public. I know I’ve posted about anxiety before but I make no apologies for doing so again. This is after all a blog about an ASD where one of the overriding traits is extreme anxiety as well as our old favourite: demand avoidance. So I’m now going to try and explain “anxiety in public” – Basically I had my first meltdown in public for a very long time. Those with PDA reading this will no doubt be able to relate to just how awful that is but for those of you who don’t have PDA I shall try and explain. It’s mortifying and terrifying. We all get the extremeness of the anxiety felt by those with PDA but for me it’s worse in public. I’d almost forgotten that but I’ve had a stark reminder over the last few days! That’s what I want share now.
So on Monday 11th July (today is Wednesday by the way) I left home (Devon) for a long train journey to Dover to give a talk on PDA at a SEN Conference. Like I’ve already explained I had to travel alone as Paul was away. I thought I might struggle with the journey but I didn’t dream I’d struggle as much as I did. That did take me by surprise. Also when I struggled surprised me. I thought I’d struggle most with the London Underground part of the journey but actually that was the least of my problems. So I boarded the second train of the day at Exeter and BOOM it hit! I hit that wall. I literally couldn’t move! I was stuck in the joiny bit between the carriages (I’m sure it has a proper name but you all know the bit I mean). Now when I say stuck I literally mean stuck. It was like my feet grew roots. So I’m like what the fuck do I do now?! Everyone pushes past me and then before I know it the train is moving and I’m still stood there in that joiny bit. Now I’m alone there. My heart is racing and I’m sweating but still rooted to the spot. I lean sideways and look into one carriage and it’s packed and I swear it’s a mile long. I then look around the corner into the other carriage and it’s just as packed and seems just as long. The aisle also appears much narrower than it should be. Like it’s shrunk. I can’t go in there. I’ll get stuck. Trapped. By now I’m convinced everyone is looking. Judging. Fact is no one is. There’s no one else there. Just me and my anxiety. I open the window for some air. All I’m thinking is “breathe”. My chest feels tight and it hurts. By this point I’m crying. Come on Julia, get ahold of yourself! Breathe. Just breathe. I check the time on my phone – fuck me, only 10 minutes have passed! I’ve got another 2 hours of this. I don’t even have the comfort and option of getting off the train at the next stop because this train is the speedy one. The stops are Exeter (where I boarded), Reading and London Paddington. Great! Reading is over an hour away. Now I’m in floods of tears. As quickly as I wipe a tear away there’s another one on its way out. I’m sure people have noticed by this point because I’m rooted near the loo and there’s a queue of eyes. Some of them are bound to have noticed. It’s the law of averages surely. I’m now shaking and dripping with sweat. And crying. If I don’t stop crying soon I’ll end up with a bright red and puffy face for ages and then everyone will definitely know I’ve been crying. I check my phone again. Another 20 minutes have passed. Okay, so I’m 30 minutes into a 2 hour journey. That’s not too bad. It’s not ideal but it could be worse. Stuck/rooted to the spot for the remainder but it’s doable. It is better than the alternative. Walking into one of those packed carriages. So I look at my phones screen and see that my friend has replied to a message I sent before I boarded. It felt like she was offering me a lifeline. I reply and tell her I’m stuck and that I don’t know what to do. I tell her I’m scared and she listens. She gets me. She understands me. I don’t need to explain or justify things. She talks to me. Tells me it will be okay. She makes me smile. A virtual hand-hold – just what I needed. She enabled me to focus and think. So I follow her advice: I look out of the window and just breathe. I’d been trying that earlier but I just couldn’t – that breathing lark. It took someone else to tell me to just breathe for me to be able to do it. In, 2, 3. Out, 2, 3. In, 2, 3 and so on. Funny how the mind works (or doesn’t!). Anyway after about an hour total I finally get the courage up to stop the guard when he passes me again. I say again because he’s been past at least twice since I boarded. Anyway I stop him and hand him my Autsim Alert card and I simply say “help me”. Thankfully I’d put my train ticket in with my Alert Card earlier in the day just in case. He then took my case and showed me to a seat. It was as simple as that. So that was the outbound journey. Not perfect but I made it….just.
Where am I now in my journey? Well I’m a lot more than 30 minutes in where I started writing this. I’m now on that same train again and you’ll never guess what…..deja vu but worse! I hadn’t even set foot on the train before I started crying and forgetting to breathe. Dear god! What’s wrong with me. I force myself on board and then freeze. Here we go again! Another public meltdown. Now I hate myself for this part but I thought “why me”. I really did. Why did this have to happen so publicly…and twice! Why can’t I just board a train and find a seat like any normal person! Why must I have to burst into tears in front of half of London. I also (shamefully) thought “it’s not fair”. I want to be able to do the normal things like get on a train. I want to be normal. I hate having those types of thoughts. The self pitying type of thoughts. Woe is me and all that. Normally I “suck it up”. I deal with it. I’m tough and I can handle anything (apart from physical pain). I’m certainly not the type of person who cries because they are scared of boarding a train alone! I’m confident and bubbly right? Well, yes and no. I am confident and bubbly if I have someone I trust with me. I can’t emphasise that word enough. Trust. It can’t just be anyone. It can’t be a random on the street but it also doesn’t have to be Paul or even a close friend. It can be someone I’ve just met or, as in this case, the young man serving behind the buffet counter on the train. Someone who looks trustworthy or whose job it is to help. By pure luck I boarded in the buffet carriage (this fact is important but not just yet), so I board and head towards coach F, I’m teary eyed and scared but I’m okay. I think I’ve got this nailed. The slidey doors open and I walk forward about 10 steps into the carriage, I see a sea of heads, the air is still and hot, there are bags and cases sticking out everywhere, how can a train that was completely empty a few minutes ago already be this full?! The train looks so long and narrow again, I pause to scan the carriage for a seat. Any seat alone will do. Wait I can’t sit next to a stranger. I look but can’t see anything free. The train begins to move and I panic. I start backing out. I just can’t. I reverse as far back as I can go and end up back in the buffet carriage. Now this is where the fact I’m in the buffet cart comes in and also the young man. He saw me right away and asked me if I was okay. I just handed him my alert card and blurted out that I need help to find a seat. Straight away he told me it would be okay and asked me to follow him. He carried my case and took me through to first class. He stored my case and told me to sit down and to relax. Before my bum had even managed to warm the seat another gentleman had arrived with a refreshments trolley and he, upon seeing how upset I was, said to me that if I needed anything to just give him a shout, even if I only wanted someone to chat to. So all is well I think. I’m safe. It’s almost empty in first class and the air is fresh and cool (God bless air-con!). I relax. I breathe. In, 2, 3. Out, 2, 3. I’m going to be okay now. Just sit here and breathe. Simple really when you think about it. Well all good things must come to an end! The third member of staff I met was the ticket inspector (and whom I subsequently found out was also the train manager) and he was something else altogether! He saw my Alert Card but upon seeing my ticket announced loud enough for the rest of the carriage to hear that my ticket wasn’t valid and that I’d have to move. Through tears I asked him repeatedly to speak to the young gentleman who seated me here. After about the 4th time of my repeating this he finally relented and grabbed my ticket and Alert Card and stormed off to speak to him. A couple of minutes later he returned and told me that I could “stay here until I’d pulled myself together”. As he walked away he said that if I want to upgrade then I’d have to pay, again loud enough so that those around me could hear. I couldn’t face being a further source of entertainment for the people around me so I just left him to walk off and pretended to read my book like everything was cool. I was in fact more than happy to pay the extra but I wasn’t about to become another source of entertainment for those around me. So now I’m even more upset than I was before. I’m now sat waiting knowing that at any moment he’ll be back to get me to move and then I’ll back exactly where I started. Seatless and scared. A few minutes later the trolley gentleman comes past again and can see that I’m more upset than when he left me last. He sits down opposite me (table seating) and I explain what’s just happened. It was at this point that he informed me that the ticket bloke was in fact the train manager. I had to stop myself from laughing through the tears at this point! That rude and grumpy man is a manager! Well now I really have seen everything! The trolley man apologised and promised me that I wouldn’t have to move. I offered to pay the extra to upgrade but I was told there was no need. He was very sympathetic but in a non patronising way. He sat with me for a good 10 minutes. We just chatted about this and that, mostly how unfair it is that we can’t smoke on trains anymore! Boy I needed one at that point. With massive thanks to both the buffet and trolley men my experience wasn’t a complete nightmare but it was exacerbated by ticket man aka ‘train manager’ who interestingly enough was wearing a Mr. Grumpy pin-badge!!! 👍
So what have I learned? That I’m not made of stone. I’m vulnerable to meltdowns and that I can’t always stop them. I’m mortal to them. I think I already knew this but I tired to convince myself that I was past all that. I think I’ve spent so much time now surrounded by support and living in my ‘bubble’ that I’d forgotten that without all of that I can’t manage. That’s scared me. I don’t like that.
Could I survive without Paul? Yes, but my world would shrink massively, more so now than ever I think. He really enables me to have a life outside of the home. Without him I would hardly ever leave the house. Paul is much more than just my partner – he’s also my carer, my rock and my best friend. 💜