Day 9 – Father’s day pie, struggling with life stuff. Charlotte and POTs

Father’s Day, which 2/3 of our children basically forgot. The one with a job hastily threw money at the problem… literally. The one without went for the time old classic “it’s lost in the post” oh his great great great great grandfather would be proud. Apparently the old ones are the good uns including with excuses. He then turned it round to he would be able to prove this but he couldn’t because evil evil mam had confiscated his phone and he only has access to that email from his phone. Not from a computer. For reasons. Of course. The girl had bought father’s Day stuff probably the day after last year’s father’s Day just in case. She’s going to be one of those folk who finish Xmas shopping in April and wrapping by May.

It’s looking likely that Charlotte throwing up, violently, All day was in fact due to Postural Orthostatic Tachycardia Syndrome. A quick read on the webs and it seems this indeed can be a thing with POTs. We need to see someone about this as she was in a real state. Which left me 80% worried about her and 20% feeling guilty as I had social out out plans that I’d wanted to keep and couldn’t. One of the tough things about being a carer is feeling guilty if you ever feel disappointed. Of course the sick person had it worse and that’s where the guilt comes from but it’s tough not being able to make plans and stick to them. People who haven’t been in the situation or one similar simply don’t understand, they think you’re just unreliable, flaky or making excuses. After a while a lot of people just stop inviting you. Which sucks. But it’s part of living with a chronic illness or caring for someone with a chronic illness. I still wouldn’t change my girl for the world.

Food in words and pictures

Breakfast

Berries, goat yoghurt cacao nibs

Lunch

Shepherd pie – homemade with turkey mince, carrot peas, chicken stock, potatoes, sweet potatoes

Dinner

Home made popcorn with salt, cocoa, made with cocoa powder and unsweetened almond milk

Total sugar

Today’s exercise

A dog walk into Alnwick centre around it and back home. Fun fact where we live has a large castle Alnwick castle and the town use to reside within a wall. The street either is named Bondgate Within and Bondgate Without.

This is the old gate

A little thing on the way home made me happy, these lovely yellow flowers.

Then it was a yoga plus CrossFit session

Day 8 – I slept through the night

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

Breakfast

Crackers with smoked salmon and cream cheese

Lunch

Fries at the festival followed by a quinoa salad with asparagus, boiled eggs and a date thingy.

Dinner

Parsnip and cauliflower soup with crackers and butter.

Snacks

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!

Total sugars