My bed became the centre of my world on May 19th.
As many of you know I began to struggle in early March, with what I presumed where mental health issues. I was waking in the night drenched in sweat and feeling nauseas. I decided I was anxious. I couldn’t motivate myself to do anything, or even get out of bed. I wondered if I was depressed.
By early April I knew I definitely wasn’t depressed. Feeling happy about my life, but I was starting to find my short daily walks with Coco (the Purple dog) wiped me out for the rest of the day. So I assumed it was a flare of the chronic illness I’ve been diagnosed with, asked for extra help from Mr Purple with meal prep etc, and tried to carry on.
In the week leading to May the 19th I was spending more and more time in bed. Then I just couldn’t function any more. So here I am. I’m starting to recognise a correlation between feeling anxious and my physical health. I really do not know what it is, but there’s a link I’m sure of it.
I’m mostly in bed, with short trips downstairs. I’m working, from here, because I feel that if I don’t keep up this connection with the world then I’m disappearing. My next public speaking job is in three weeks at The Autism Show, I’m determined to get there but may need support to make that happen.
In the meantime the rest of the Purple family have had a busy month. Wonder Girl turned seven and had the most magnificent party at a local pottery studio.
Super Kid took his SATs. This was not a huge concern as he’s academically very able, and apparently enjoys exams because people are quiet and he can concentrate. But they’re done and he heads into his last term in primary school. I try to focus on the journey of watching him grow, rather than the stages we are leaving behind.
It’s tricky for us all that I’m so unavailable. Sometimes too tired to even manage to smile and listen to them tell me about their day. I am wracked with guilt, and praying for this to be short term!
Coco has enjoyed a very active social life. Friends and family have helped with walking duties. She even went on an adventure to the beach, with a friend and her Cavachon. this weekend. I long to walk her but I’m really glad that she’s not missing out despite our current situation.
So the overall sense in the Purple house at the moment is one of waiting. Waiting patiently for whatever our life ends up looking life after this. I hope I’ll see improvements. Obviously I want everything to go back to normal, but it’s possible that the cycle of bust and boom led to this. I may need to tweak normal to be something which enables me to stabilise and avoid these crashes.
So since I have no idea what that will look like at this stage I’m focussing on short term. Short term I have ambitions to be dressed in something other than PJ’s (though I do love my PJ’s) and downstairs with my family more. One step at a time right?
Ella, I think it’s a ‘May’ thing as I too had a period where I couldn’t engage body with mind.. mine is most definitely depression and every so often the black dog craves attention.
I would only suggest that you should never feel guilty about inactivity, I learnt a long time ago that when your mind ignores the hints to slow down, the body will stop you.
You’ve hit a ‘crash’ for a reason, perhaps you’re stretching yourself too thin and trying to prioritise everything and please everyone … you cant, you are amazing but even Supergirl had limits. Find out what your Kryptonite is and limit your exposure to it.
But PS… DONT EVER FEEL GUILTY!
Thanks for sharing, Ella, as always. Your posts and videos are so hugely valuable to me in my work supporting families like yours and I find I’m constantly sharing your clips. Thanks so much for all you to do make autism a normal part of our communal life – a difference not a disability.
Never doubt your amazing parenting skills. You truly love your kids and have taken the time to learn how best to parent in your peticular situation. If more parents did that, I think the world would be a much better place.
So thanks again Ella, and keep shining bright.