From April 19th 2022
And here’s today’s chronically craptastic awareness raising anecdote:
I took my son somewhere new to play today. He loved it – lots of variety with toys, sensory and messy play. It was fantastic for him. And I loved it too because I got to chat with other mums. But it was hard on my body.
I didn’t want to draw attention to myself by sitting on the floor, or dragging a chair around the room to every playing station my son pulled me towards – when all the other mums were chatting standing up. Standing… my biggest nemesis. I just wanted to ‘fit in’ – as is often the case for many people in new situations/places, and especially for those with chronic illness. I didn’t want anyone to know there’s something wrong with me.
So, I chatted to them, standing up. Which was lovely (conversation with grownups – yes please!), however, it was physically really hard for me to do. To them, I managed to appear like a ‘normal’ mum. But what they don’t realise is the entire time I could feel the blood draining from my brain, and the resulting light-headedness, and general sense of urgency to sit down before I collapse.
I crouch down to play with my son when this happens, as this helps to get a bit of blood back up to my head – without doing anything to draw attention to myself. But I can’t crouch for long … because I’m fucking old and my knees can’t hack it! So, then I stand up and pretend my vision hasn’t just gone entirely black (thankfully only for about 5 seconds). And while all this is going on, I’m still paying attention to my son and chatting to other mums – pretending to be ‘normal’. No-one needs to know about my constant invisible struggle. Well, not unless I miscalculate things and face-plant the floor. Which thankfully, I didn’t.
Later at home, I fall asleep during my afternoon rest (which no-one at the playgroup has any idea that I need), because that’s what happens if I’ve pushed my POTS and ME too far. My brain just shuts me down so it can recover.
I know I should have just sat on the floor, or explained to the other mums that I have a health condition and need to keep dragging a chair all around the room (because my son is shy and won’t go off to play without me) as a way of managing my symptoms. But I didn’t. Because sometimes, after being in an electric wheelchair and so unwell for so long – it’s just nice to finally be like everyone else. At least on the outside.
And my baby had a great time – which makes it all worthwhile. We will go again and eventually I will open up about my need to sit. But for today – I got to be (abnormally) normal.