It’s a beautiful spring bank holiday weekend here in New Zealand, my adopted country of 13 years. It reminds me of my childhood with the cherry blossoms and the sound of birdsong, though, half way round the world from my homeland, the sounds are distinctly different. The smell of cut grass remains the same and my chilled chardonnay would most likely taste just as good in my parents back garden as it does here on my freshly cut lawn. It’s idyllic in a way, but behind the scenes lies an ache in my heart that at this moment in time, feels impossible to mend.
My girl has been trying to get dressed for 5 and a half hours. And so it was the same the day before, and they day before that and the day before that. Every day that passes, is currently spent in an OCD induced routine that has reached epic proportions.
All I can do is wait. The waiting brings up so many feelings and emotions. Every day they come and they overwhelm me. Every day I go through the processes of finding peace in the most difficult of circumstances. Every day I cry with frustration and pity and despair.
Today is Sunday. My horrid sleep ruining alarm clock went beep beep beep beep at 6.30 am, as it does every day. I awoke with feelings of hope that today would be a great day. I put my feet onto my fluffy rug and snugged into my dressing gown, swooping up the little kitten on my way through to the kitchen. She loves to squish herself into my arm, which makes filling the kettle really awkward but I love her so much. I fumble around. Next my little dog Wilma is let out of her night time cage and I fling open the kitchen door to be greeted by Mr Marley boy, the fat fluffy farm cat who goes on wild adventures during the night and is hungry for cuddles and cat meat when he shakes off the garden that’s collected in his long grey fur.
The coffee tastes good.
Step two of my morning routine takes me to my lap top, which I sit at crossed legged on my heap of comfy cushions. Piper and Marley begin the purr chorus and I flick over to Facebook to check in with my cyber family. The ones who keep me going and inspire me to work every day on learning and supporting PDA.
When I’ve had my fix, I go to my girl and start my morning routine to wake her. You can read in full detail the morning routine on the post entitled what do you do in the mornings with Pathological Demand Avoidance syndrome. But suffice to say, that if you can imagine everything that needs to be done is a demand that feels like a threat to your life, then waking up is a really big one and it starts with heightened anxiety. To antidote the anxiety, avoidance kicks in and we begin our creative dance around the demands as we ease as gently as we can into the day. Anything less than tiny steps and indirect encouragement, results in angry shouting and panic. Continuing on the wrong path results in worsening behaviors and verbal abuse, followed by complete refusal to even have me in the room, let alone speak or pass the breakfast tray.
Novelty within routine is a PDA strategy. This means that the predictability of breakfast in bed is mixed with having a choice of what to eat. A sudden surprise in breakfast offering can override the anxiety and refusal and have a motivating effect. For example, coming in with hash browns and saying I thought I’d treat you to something different, can have a really pleasing effect. We have also talked about this and concluded that “Mum, even though I like to know whats going on, I also like to be impulsive or I get bored”
I am not going to run through all of our getting dressed routine out of respect for my beautiful 15 year old girl. But please know that OCD is a crippling illness and has once again taken hold in our lives. Over the years, it has fluctuated in severity and is currently manifesting in checking and symmetry. This means that she gets into a loop that is so powerful, it’s almost impossible to break. I don’t know if you have understanding of OCD, but it can be managed through power of thought and determination, alongside medication and therapies. If you have OCD and PDA, it’s a double wammy of conflicting inner voices. Even if the sufferer of OCD wants to fight back, PDA will not allow it. Anxiety appears to be from two separate sources and the result is an even bigger dose of fight or flight mechanism.
Waiting. Waiting. Waiting. Always at hand to help if called. Running through the emotions of helplessness and uncertainty.
Finally we got out to the country fair we had planned to go to when we woke at 6.30 am. The time is now 3 pm. The fair finishes at 4. The stalls have run out of food, the crowds are dwindling, dawdling around. It’s not the hub bub of excitement it would have been at 11 am. I feel disappointed, my visions of filling my bag with fresh produce and laying back on my picnic blanket followed by a walk to the waterfall, not realized, but I remind myself of the things we are so lucky to have and my mind brings up the picture of Bethany and I compare my girl to her. My feelings change to gratitude and determination that we will make things better.
We only manage a half an hour walk around the fair before things get too overwhelming and uncomfortable for my girl and she is panicking and asking to go home. We do as she needs because it’s all she can manage. Some days are better than others but every outing is hard.
Everything we say and do is considered and we always have to be prepared to down tools and retreat. PDA and OCD are in everything we do.
On the outside, you would never know. If my family walked past you at the spring fair, we would look like a normal, happy, carefree family. You would never, ever know that we had spent all day trying to get our half an hour of normality. Covers of books are never to be judged.
So, here I am, another coffee, another morning, another day ahead. I hope this post has given some insight into not only a day in my life, or a day in the life of PDA, but to a day in the life of everyone who lives with PDA. It is a hidden disability and it needs to be heard. If you know someone who lives with mental health problems or illness, please do not assume that because they seemed OK, or looked happy and normal, that they are. Behind the smile, there is a lot more going on. Please learn about PDA and how you can better understand and help others.
Thanks for reading.