Jealously

Sometimes times I get a little jealous, when I see kids reaching normal teen milestones or people achieving something I would like to. Back to school, prom, taking a great job or doing up the house. I don’t begrudge them in the slightest, heck in fact I’m pleased for them every single time. I just perhaps feel the walls around my choices around our lives a little more strongly that day.

When my children were young working part time worked well, it meant I could be the one who picked them up from school, I could attend every school event and my eldest needed a little more support due nuerodiversity and schools struggles with the nuerodiverse. I had always planned on moving into a more academic field once they were all at senior school level. I have plenty of qualifications ready to go. Charlotte of course just wants to be teen and do all the regular stuff that goes with it.

How does the saying go “Life is what happens while you are busy making other plans” J Lennon, and so it did. Anyone who reads this blog knows what happened next. My daughter developed cancer, followed by a diagnosis of Cowden Syndrome and later Chronic Fatigue Syndrome, Postural Orthstatic Syndrome, OCD and anxiety. She needs me, she needs me to there, to help her with homeschooling, to take her to appointments, to make her food, to look after her. Life took a detour and my daughter became disabled and I became her carer (as much as I dislike the word). Now I want to make it quite clear that I do not resent that in the slightest, I would not want anyone else to do this for her. What I would wish is that we both could have a normal life, that she could be at school and out at the weekend, worrying about crushes and ridiculous fashion, that I could be out at work and furthering myself in some way. That our lives had not detoured. But they have and I think it’s ok to occassionally mourn that, to acknowledge that I wish things were different. To say “honestly I wish my daughter had the opportunities yours does, I wish I had the opportunities you have” I wish we didn’t have a wall around our choices.

I know I’m not alone in this, carers of all ages all over the world face the same thing, it’s a tough thing to talk about though as I am sure none of us want to make our loved one feel that we don’t want to be there for them. Of course we do, what I mourn and again I’m sure it’s the same for most people in my situation is the life we both should have had. I know at times she feels left behind behind by her friends and I feel left behind by life. I feel like my family runs just to stand still as the chance to move forwards just isn’t there, we still fight to every day.

I also know there are those who look down on me for being a “yoga teacher” while their careers have soared, It;s been made clear in both subtle and not so subtle ways. I guess that one is on them for having a narrow perspective of success. It never ceases to sting though when someone puffs up in front of me, boasts of this that and the other then asks with a hint of derision if “I’m still doing my yoga thing” in a way that makes me feel small in comparison.

In reality this year has been a success just in a different measure, Charlotte and I started the year with us both desperately nervous about full time home schooling and by the end of June she had sat 3 GCSE,s at 14, quite successfully I’m sure (we don’t know yet and are rather excited). She is happy and by god that means more to me than anything else in this world and we have time together, a luxury not many families do.

I have freedoms a full time working person doesn’t have, I can run in the middle of a day or go to the gym in the middle of the day while Charlotte is resting. I enjoy the job I have as a yoga teacher, actually I LOVE it especially where I teach at the moment.

Please forgive me though if every once in a while I have a pang of jealously when your teen is off to prom or you get a promotion or buy a new house. I’m happy for you, I genuinely am I just occasionally feel the walls around Charlotte and I.

If you find anything of interest or use in my blog please consider sponsoring me and help work towards a cure for Cowden Syndrome. Thank you.

https://www.justgiving.com/fundraising/sugarfreeyear

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