For me this time it was something as simple as making myself Jam on Toast that started my downward spiral. I had been doing well lately, I have learnt to avoid triggering situations when I can and those that can’t be avoided, such as a pending scan appointment, I have spun them around into a positive scenario rather than one of fear. But it’s the things that catch you unprepared and off guard that hurt the most.
Jam on Toast was all I ate for days on end at points. It was the only free food we had access to on the wards, and over the Christmas period it was the main staple in my diet, alongside leftover Christmas pudding which I now cannot stand. When I made Jam on Toast last week, all I could think about was those weeks on the D wards waiting for a diagnosis, living in fear of the future, unaware of how long we had left with our son. I remember one night on the second admission I lay next to him and watched him sleeping and I just lost it. The thought of him being terminal and having months left to live consumed me. Those are the fears that Jam on Toast brought flooding back and I feel like I am back on D34/35, not E39 or PCCU.. right back at the start, fearing the unknown, fearing the future. Which is what I’ve been doing ever since.
Don’t get me wrong other situations trigger other memories.. such as the life support period which has my worst memories. I actually had to sell Logan’s Pram earlier than I planned on doing because looking at it reminded me that we went out to buy it one day whilst Dylan sat on life support and shortly afterwards his deterioration began.. That damn Pram gave me feelings of guilt and pain more than you can even imagine. I have a similar reaction to platters of cupcakes, flowers, certain songs, and my old car which Mike drives.. but I avoid scenarios where those things could trigger me. Walking past PCCU triggers memories of running from the parent rooms to him as he was deteriorating and worrying we weren’t going to make it in time, so I avoid walking that way around now when we have to visit E floor. You get the drift.
Christmas is a huge trigger for me and the last two years have been really hard, the fact I’m feeling in a bad place already isnt helping, so I’ve tried to switch off thoughts of that for now at least. Luckily I’d already done a lot of my shopping before I got triggered as I don’t really feel like it now..
Dylan has also had a rough two weeks with illness and eating AGAIN and because I’m already in ‘fight or flight’ mode from the Jam on Toast trigger my brain is in overdrive. I feel constantly like something is going to take him away from me, last night I even slept with him in our bed. I can’t sleep for wanting to keep checking his breathing and I feel sick to the pit of my stomach daily.
Logan is approximately the age Dylan was when this all started bar a few months, but he is bigger and very talkative so you could be forgiven for thinking he is the same age. He looks just like Dylan did at that age, except with slightly darker hair, he has the same smile and the same mannerisms and fits in all the same clothes Dylan wore that winter including the Tshirt he was wearing Christmas Day 2015, but I’ve not let him wear that one yet. So now I’ve found myself worrying about him too which is completely illogical I know, but PTSD isn’t logical.
I have C-PTSD or High Functioning PTSD which basically means I’m very good at hiding all this from everybody, putting it in a metaphorical box in my mind, and getting on with daily life. To the outside world I look mostly like a fully functioning adult, infact I’ve been told I actually come across as totally ‘put together’ and that I do ‘more than most’ but that is one of my coping mechanisms.. Keeping myself busy, being that ‘extra’ mum keeps my mind and my demons quiet until I let my guard down. Which I think sometimes is why it hits me so hard when I do have some downtime like this evening.
It’s important to remember that actually.. Most people fight battles behind closed doors, and sometimes the quietest person has the loudest demons or that ‘perfect’ mum or dad crumbles into a nervous wreck every evening. But each morning they get up, put on their brave faces and head out into the world because even though life is tough, it could be worse..
