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

Thank you ♥️

I’ve wanted to write this post for months, but honestly I struggle with opening up. I’ve become very adept at coping with adversity. A side effect of that is that at times I have a wall around me which is hard for others to break through and for me to break out of. Those who know me well know I’ll always say I’m “ok” even when I’m not and I’ll never ever, ever, ever, ever ask for help. Even when I need it. Heck I have a hard enough time even accepting help when it’s offered! Really I’m a difficult person to get to know properly.

When I started my first bout of fundraising not only was I difficult person to get to know but I was very damaged. I was exhausted emotionally and jaded by people and life. I found it almost impossible to connect with others, their day to day life had really genuine concerns but they were more regular ones. I had had 3 years of slowly being dragged through the process of finding lumps in my daughter’s neck and wanting medical reassurance, to biopsies, to her surgery, to finding out it was cancer. This was followed by the diagnosis of Cowden Syndrome which means this is the rest of her life, she will always need checks and operations. She will always be at risk of cancer. This was followed the next year by a diagnosis of chronic fatigue syndrome and postural orthostatic tachycardia syndrome. At each point when we were waiting to find out a diagnosis it was all consuming, at social events when I started to relax I’d loosen up and begin to talk about her cancer, or the next awful thing we were hoping it wouldn’t be (which it always was the horrible thing) and God bless the person I was talking to they would always get this look of “get…me…out…of…here” I made people uncomfortable. My life was the kind of experience at that time that parents live in fear of. Connecting became almost impossible. At the same time I had old friends of 20 or so years just vanish. I guess they found seeing a kid they’d known since a baby with all this happening was too much. I needed them though and the sense of abandonment was raw and painful.

All of this meant I’d essentially come to terms with the fact that it was me and my family. When I started the fundraising the first year being 260 workouts I’d slip into the gym during the quiet times and get it done. I hoped that people would sponsor me but I had no expectations.

I certainly didn’t see what actually happened coming. The amount of support I received was incredible. A wonderful woman ran a raffle at her business, people bought t-shirts and wore them to comps family and friends sponsored me, some brought in prizes for the raffle I ran at the end of the year, a gorgeous lady made an lovely hand crochet blanket to raffle. My son ran his first ever half marathon and it was up a Cheviot, one of our awesome coaches accompanied him (probably wise he might have gotten lost). My coach patiently programmed the workouts for me working around hospital appointments, exhaustion and general whining. Sometimes people would workout with me, before the sugar free year I had cake regularly left at the gym by a superb home baker and fabulous woman. I had people offer words of support and kindness, offers of coffee and hanging out and just being normal. These amazing people have become my friends and my life is so much better with them in it.

Thank you to each and every person who supported and continues to support me in any way big or small. Not only did we raise over three and a half thousand last year for the PTEN research Foundation in London but you healed my heart and restored my faith in people.

We still have ups and downs, my daughter has a great deal to face, her brother is fighting and doing very well at doing so mental health issues. Honestly at times I struggle with being a carer and homeschooling and the limitations it puts on both Charlotte and my life.

I know however that I have a lot of people who have my back.

Thank you ♥️

Week overview of natural sugar intake.

I had the bright idea yesterday that rather than boring you every day (I still might) with what I ate and what sugars I took in that day I could use my fitness Pal week overview. So below you’ll find my total sugars for the week. Around 40g a day about the amount in a can of coke. Funny when you think of it that way.

I’m still sticking with my sugar free booze free intentions. Oh boy, if ever I was going to cave it would have been this week. It’s been hell, everything I was working towards to try and help my son wasn’t just undermined but ripped up and thrown away plus a wedge driven between we’ll never overcome. I’m now in one of those situations where it’s like when you’re looking at a broken plate on the floor. You can try and glue it but it won’t ever be useable again. What’s been broken is broken for good, trust works like that.

It’s heartbreaking but I’m going to try and focus on moving forward. We are looking into relocating as soon as we practically can. I just want out of here. Now. Honestly if I could pack a bag and leave tomorrow I would!

Until I can it’s just keeping busy, daughter and I had a lovely couple of hours doing just that at Bamburgh castle. If you ever visit Northumberland it’s one you must see!

Day 23 – More bike erg and an accidental walk resulting in extreme hunger!

I knew I was going to spend most of the morning driving my sons around. To make sure I had time for exercise I went to the gym for 8.30 to get half an hour on the bike erg in. Even if I’m limited in what I can do at the gym with the broken toes it always clears my head.

I was right about the driving too, by the time I’d picked the younger one up from Blyth and delivered him to Alnwick then driven the older one to work and myself and daughter home I’d easily covered 80 miles. Add in a diversion to Craster and I’m sure it was closer to 100. Not bad with two broken toes. Still not as far a my husband who is driving younger son to Peterborough to stay with his Auntie for a week. That’s a rather long way there and back in one day!

About the diversion to Craster, my daughter decided she hadn’t been to Dunstanburgh castle for a while. I assumed wrongly this meant she’d been, well ever. Wrong. Now at this point I’d been to the gym and driven around 80 miles, I wanted lunch. “Let’s have lunch at a pub” I say, “no” says Charlotte “we’ll go to a cafe at the castle”. Which turned out to be a mile and half from the car park. Normally, not a problem, with broken toes I was slow. Really slow. Anyway we finally get there. No cafe, just a shop, filled with chocolate and sweets. Wonderful. My lunch consisted of a packet of crisps and a bottle of water, until I arrived home much later. Thankfully I didn’t eat my daughter or the dog. It did after a few easy days remind me how tricky being sugar free can actually be. It’s not all banana ice cream and cinamon! Gorgeous views though.

Today’s food in words and pictures (yes I remembered to take photos today!)

Breakfast

Oats, cinnamon, small apple a few grapes

Lunch

Crisps

Later lunch

Roasted cauliflower slices, fine green beans, feta, olive oil and black pepper.

Dinner

Strawberries, apple, raspberries, satsuma, kiwi and cacao nibs in a fruit salad with creme Fraiche.

Snacks

Dark chocolate

Total sugars

Day 22 – slight mishap and a trip to Bamburgh

It was actually a really lovely day today. After house stuff I spent a little time at gym on the air bike. Exercise always, always clears my mind. Of course I’m limited with broken toes, but my over sized Primark trainers allowed me to get on the bike.

After lunch I took my daughter to Bamburgh which is a pretty little village a short drive away. It has quite an impressive castle, but pretty much everywhere here has a castle! It’s not something Northumberland is short on.

Jasper particularly enjoyed killing the seaweed. It’s one of his favourite pursuits at beaches.

There was a slight mistake with a cappuccino I ordered. It came with sugared chocolate, I had asked for cinamon. Now in some circumstances I would have said something, but the lad who served me had been told off 3 times just while I was waiting and with a queue forming behind me I thought I’m not making a fuss. So I scrapped it off as best I could.

This is me looking impressed

I so, so, so wanted a gin. Warm days and gin. Argh.

Today’s food and total sugars

Breakfast

Eggs and corn crackers

Lunch

Roasted chickpea and olive salad

Dinner

Banana and cherry ice cream with cacao nibs (made with just frozen fruit blended)

Snacks

Seeds, nakd bar

Exercise- air bike