Last night I slept through the night for the first time I can remember unmedicated (there have been short periods of time across Charlotte’s cancer journey where I’ve used sleeping pills) No shame about it either). Anyway I have in my mid 40s accepted waking usually a couple of times a night as part of middle age. Kind of have v just have been one of those rare blessed nights allowing me to snooze 10.30 to 6 undisturbed, or could even the relatively low level of refined sugar I was enjoying across the week have been causing an issue. I guess I’ll find out over the next few days, weeks and months.
I took Charlotte to The Mighty Dub fest, a VW festival that takes place in Alnwick. We walked there with Jasper the dog. She was so looking forward to it but within 20 mins and a quick whizz round in a waltzer she had a huge chronic fatigue flare up. I had to wrap her around me and haul her to the road where her dad could pick us up. Of course people thought my teenage daughter was drunk, some shock their heads others even tutted. Of course a teenager can’t be ill or disabled, they must be up to no good. When the truth is my daughter has chronic fatigue syndrome, postural orthostatic tachycardia syndrome and is autistic all of which are linked to her Cowden Syndrome.
Poor kid, she wanted to have a good day our and ended up broken. This is why I’m fundraising for research into Cowden Syndrome. I want a future for her and for kids like her. Without Cowden Syndrome she wouldn’t have had cancer and wouldn’t now how chronic fatigue syndrome or postural orthostatic tachycardia syndrome
Before we left I did buy a bowler hat though. I suspect I will wear it a lot!
I should be out socialising tonight but she is so poorly right now I couldn’t possibly leave her. It’s tough for both of us, I had plans tonight she had plans tomorrow neither will happen. Such is the way with chronic illnesses.
On a different point I had a couple of interesting finds that will allow me to add flavour to food. A vanilla paste and orange oil, both with neither sugar nor alcohol.
Todays food in pictures and words
Crackers with smoked salmon and cream cheese
Fries at the festival followed by a quinoa salad with asparagus, boiled eggs and a date thingy.
Parsnip and cauliflower soup with crackers and butter.
Banana ice cream made with frozen bananas, frozen fruit and the vanilla pods I acquired..
A smidge of dark chocolate
I really, really wanted a gin tonight, I’m not a big drinker but 2 or 3 singles on a sat night especially when stressed (which I always am when she’s poorly) is lush.
Oh my god the ice cream is amazing. So simple too, 1.5 frozen bananas, 100g frozen berries a splash of almond milk and the vanilla paste (a smidge).
Of course it is quite high natural sugars wise so whether this is better for me than normal ice-cream I have yet to be convinced!