Emma: A day in the life of a PoTS mummy
Imagine struggling to get out of bed every morning, like you have a terrible hangover, you just don’t want to open your eyes, but you have to .. A little boy relies on you pulling yourself together and playing mum another day.
I look at the clock and yep it’s only an hour since I last checked.. it’s 6.45am. I can practically tell the time now without even looking at the clock, I see it every hour of the night, I know exactly when he’s due to stir, when the birds chirp, when the sun rises and when the dog needs out for a pee.
So here I am 6.45am pulling myself out of bed and struggling to carry him down the stairs, he can get down himself he just chooses not to and it’s too early for a tantrum. A quick nappy change, bottle in the microwave, water ran for the dishes, teeth brushed and it’s finally time for a cup of tea. The last 10 mins have been a major achievement, I managed all this with eyes half shut, heart thumping out my chest, short breaths and the feeling of blood rushing through my legs and to my head. It’s a miracle I haven’t passed out.. But I’m no use to him unconscious so I try to ignore the signals my body sends and just power through.
After a cup of tea I’m still not quite with it, but it’s time for another nappy change, breakfast, a wash and a change of clothes. I refer to him when I say wash as there’s no way I’ve got either the energy or the time to be washing myself properly, dry shampoo and baby wipes are an absolute god send. I sit on the toilet to wash my face and sort myself out, the less I stand up the better and the less likely I am to let him down. I think to myself I must not forget to take my tablets. About an hour later before we leave the house I’ve only managed to make another cup of tea and make some conversation with him about today’s plans, he listens to every word and mumbles baby talk back, he has no idea mummy just wants to collapse in a heap on the floor. But it’s time to go shopping and as I belt him into the car, breathless from the short walk to the driveway I can’t remember if I took my tablets, but if I have and I’m sure I wouldn’t have forgotten, I better not take them again.
Driving to the shop is the happiest half hour of the day, he sings along to the radio and shouts ’Hi’ to every animal, person or tree we pass, he’s a wee ray of sunshine, for a while I forget all my woes. We arrive at the supermarket and it’s raining, this means I must muster all the strength I have to run… yes run! I can barely walk but yes I must run for the trolley, run back to the car, put him in and run to the door. I did it, a sense of relief as I reach the entrance, he laughs at me with that cheeky smile and I thank goodness I made it, but wait…right on que the heart palpitations, the breathlessness, the chest pain, the throbbing pain up & down my legs, I’m getting dizzy, but I keep walking, keep smiling at him, pretend nothing's wrong, it’ll go away I tell myself just ignore it.
Shopping all done and time for the checkout! There’s a que! Standing idle is not a good idea, I will definitely pass out, my legs are still throbbing, if I stand too long I’ll feel every palpitation, every pain, panic sets in, I have no choice, I join the end of the que. I fidget and worry and try to take my mind of it by talking to him sitting in the trolley, but it’s getting worse I can’t even speak so I just smile and try not to look ill. By the time I get to the cashier I smile politely and hope she doesn’t try to make conversation, because at this point my focus is to get out of here and in the car without making scene. I pack my shopping as quickly as possible but it’s been too long a wait for him, he starts screaming and throwing himself around in the trolley. Oh god I’m not going to make it, I’m getting dizzier by the minute and I’m praying to God that he stops, his screaming bursts through my ears like an explosion, the noise in the shop gets louder. Put my pin number I think the cashiers asking me, I can’t concentrate my heads spinning. Done now let's get out of here, a quick dash to the car, I’m not even thinking about the pains, my major concern by this point is trying to breathe properly…I somehow manage to get everything and him in the car (the last 10mins are a daze) I sit in the car for 10mins eyes shut, concentrating on my breathing, trying to slow my heart rate down, I rest, my body is so weak I can hardly move. I need these 10mins to re-boot before the drive home.
On route home he falls asleep, but there’s no rest for the wicked, here comes the dreaded migraine. Usual dull pain above my eyes, I’ve done too much, this is my punishment. As soon as I’m home it’s painkillers and 3 glasses of water. But the migraine’s there to stay. I put the shopping away one bag at a time, my arms are throbbing from all this exercise. I put the washing out and serve up lunch. Maybe I’ll feel better after something to eat. Silly me it doesn’t work like that my bodies not the same as normal peoples. But hey it’s nap time. I lay in bed with him as he drifts off to sleep, my head still pounding so I close my eyes and hope for the best. He’s sound asleep in 15 minutes but I’m nowhere near sleep, I think of all the things I could be doing while he sleeps so I get up and get to work. (I work from home online & with him at my feet I barely get a chance to put in the hours) so a couple of hours at the computer will be fine, I’ll ignore the migraine and do my best. But it’s pointless I can’t concentrate, brain fog has descended and I can’t think straight, looking at my calendar I totally confuse myself, I can’t even remember what day it is. I listen to my body for the first time today and head upstairs to lay down. I’m just drifting off when he wakes up ‘mummy mummy’ time for round 2. I’ve been laying here for all of 40 mins and it’s the same struggle getting up all over again. Granted daddy will be home from work soon maybe he’ll want a takeaway for dinner with any luck.
Every day for me is different, and my symptoms range from mild to extreme as many sufferers do. Being a parent is the most difficult thing in the world, a challenge to the best of us, but PoTS can make it ten times harder. I wouldn’t change my little man for the world and despite my condition I enjoy as much of it as I can. I hope people can use this story to understand more about the condition and maybe just smile relating to similar daily struggles. All the medication and treatments in the world won’t take this struggle away but it’s sometimes nice to know you’re not the only one :)