So I have realised lately, that I struggle to remember what it feels like to be in my old self (mind and heart) anymore. I think the 24 hour care cycle of my son through the night and the day; every day for five years has slowly led me to this point. I struggle to be my old me. My former non anxious relaxed and just have a moment without worry or planning anything “me” . Me before things got complicated . Even 6 months ago I was able to have a few hours without the children and I could feel like “me” again. Recently I had a morning with my husband and without the kids, just from 7am to 9am and 2 hours is a long time for me to be away from them both and have access to just doing something for myself/ourself as a couple. I think reflecting back to the day, I actively worried most of the time that they’d wake up and need the 1 carer with them to do 2 differing things at the same time. Or one would escape sight of the carer and something terrible would go wrong. One would unintentionally hurt the other, the carer might fall down stairs or slip over or just be overwhelmed. Because it is overwhelming. I think more so for the regular carers due to there being no break form it, so maybe its less stressful for the casual carers? I dont even know anymore.
In most cases, the adult carer can manage a 5 year old and a 15 month old baby at the same time, without too much issues but my son is non verbal, diagnosed with the highest severity of autism, severe oral and visual sensory versions/issues, cant chew, has a disorder which makes breathing/swallowing when eating a choke hazard, allergies, non toilet trained, demanding, undiagnosed ADHD so caring for him is hard for one adult let alone someone older or when there is two kids to mind at same time.
So leaving the house at 7am excited for a morning escape, the guilt and anxiety literally started in my chest and my stomach, heart pumping like a beating drum inside my ribs the moment I pulled out of the driveway. I try to ignore it, breathe through it, reassure myself its all ok, they are ok, the carer is ok. I turn up the music, I look out the window, I breathe and focus on breath and oxygen, but its a like an urgent sudden rush of grief for the ability to be normal, when will I feel normal again, when I still stop feeling so anxious? The tears come into my eyes. I try to hide it from my husband who is happy and excited to have me for a window of time to just relax, but I cant. I just feel so bad, Im so broken I cant even enjoy the time away anymore. Dont want to show my tears so I turn my head and talk and work through it. Its ok Its ok.
Its not. Life is so much more complex and layered now. How do you explain to others that say, “you need a break” “self care” “me time” etc that even when you fight so hard to find someone to help you and access the support, which is so humiliating to have to ask for and need in the first place, that once you have it, it aches inside the whole time and is riddled with anxiety.
I used to enjoy escaping for a 30 min woolies break, because I could walk around distracted about life , thinking about recipes, toilet paper, protein, treats, dog food and which length foil to invest in.. now I seem to walk into woolworths and find it so overwhelming and upsetting I start to feel closed in by the aisles and claustrophobic that I rush through convincing myself I’ll forget something, which I always do because my brain is so tired and broken and anxious that I cant remember it all. And I am rushing to leave.
Then the line up at the registers is sickening, wish they had an express anxiety aisle for those having a panic attack at that moment.
Then I race home and feel safe in my driveway for a 15 second moment. Then I get up and go inside and everything is as how I expect it, either chaotic how it always is with screams or door slamming or peppa pig/wiggles etc on three devices at once, the noise of our world, but its fine in its own way. I then wish I hadnt been so worried but I cant help it. I cant find my old me anymore, is this another thing to grieve, my old undamaged nerves and my lack of anxiety before I fell down the stairs, before the baby nearly died for the first time?
Do we have to accept along with the new life with a child with a disability and all that goes with that, the grief, the loss of our own self too? I am trying to see it as the “birth” of a new me, but the new me is so anxious and struggling. I miss my old me, will I see her ever again? Will my husband and I feel like the old “us” anymore or ever again? Can I please just have a moment of her and us occasionally? Not much, just once a month, or once every 12 weeks? 4 times a year?
I miss my old me. When people see me or hear from me, they miss my old me, but I am missing it much more than they are. I feel GUILT I cant be the old “me”, I cant make everyone happy by giving them the old me anymore, I dont even know where she is, or where to find her or how to be her anymore. I keep trying. I Keep hoping. I miss her and it hurts to look for her and then no matter how much searching I do, I can seem to feel it anymore.
One day, I wont give up. I keep trying. I have to be patient, even though I feel like it is getting so much harder every day. I hope others dont forget who I was. I dont want to forget who I was. Or how it felt.
A Journey to Joy 