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 ♥️

Exercise experimentation and sugar free struggle.

I found out at a patient meeting Charlotte and I went to last week (I’ll post about it properly tomorrow when I have time) that her low muscle tone is most likely part of her PTEN disorder (Cowden Syndrome). Now I’ve always struggled to put muscle on too but not to the same degree as Charlotte till perimenopause. Which puts us at a similar place.

My coach Hesus and I are going to experiment with ways to build strength in me (a naturally non muscular) person and then translate that to Charlotte as she gets well enough to start weight bearing exercise.

Weight bearing exercise is extremely important for her, not just because of her hyperflexibility and lack of strength. She had thyroid cancer which meant the removal of her thyroid, it also means she is kept on a higher dose of thyroxine in order to keep her risk of thyroid cells regrowth and subsequent cancer low. This carries with it a big risk of osteoporosis. Exercise will be vital then for her bone health.

She also along with chronic fatigue syndrome has POTs (postural orthostatic tachycardia syndrome) which is greatly helped be exercise.

Today was my first day of this new program. I’m excited to be starting something that might help her.

I did however find it hard. It’s tough to do things we aren’t good at, there’s a certain amount of mental struggle. But I believe it will be worth it.

My younger son was going to come to join in but couldn’t make it. He did come home for dinner though and wow he’s looking so well. His skin is amazing. I can’t wait to see how well he looks a few weeks further down the line.

Speaking of dinner now here’s my struggle. Calories. On training days to gain strength I should eat at least 2000, sounds simple. Sugar free it’s actually not. 2000 calories of whole foods is actually a heck of a lot of food. I’ve hit the calories but not quite enough carbs and honestly I couldn’t eat any more if you paid me!!!

This evening Jasper and I went for a wood walk, it’s a few minutes drive from our house and lovely and cool on a hot day like this. Plus it’s very pretty.

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

CrossFit, weekend treats and family time.

My elder son was in CrossFit contest today which we went down to watch for a couple of hours. My younger son came too to support him which was actually really nice. I haven’t spent time with him in a long while and it was pleasant to remember that actually we do get along and have many things in common, sense of humour included. He’s looking really well too which was lovely to see.

The weather wasn’t kind to those competing and seemed to flip from raining to sun and back again. So it was either too hot or drenched through. You can see how wet it is by the reflections! We weren’t close enough and my phone camera isn’t good enough to get decent photos of my son as he was on the far side, but he’s the blue t-shirt on the way over the fence.

This is a picture of all the competitors from our gym together looking rather damp. My elder son is the slightly taller one with his shirt off.

After that it was back to more mundane weekend stuff, washing dog walk etc. I did take Jasper on one of his favourite long dog walks which involves passing sheep, a wood and a castle. Along the way we also saw a family of ducks and a pair of beautiful dragon flies

Tonight of course is Saturday evening and I must admit I do like something enjoyable with a film. This week it was cherry and banana “ice cream” (basically blended together) and plain popcorn. Honestly it was amazing fake ice cream especially with extra cinamon in.

My total sugars today were the highest they’ve been since I started this challenge. I’ve had such a headache today and just wanted fruit. As the point of this year isn’t to avoid sugar but refined sugar why the heck not. I’ll be doing a weeks total sugars tomorrow same as last week.

Trying to keep busy and holy hormone hell

So the past day or so I’ve been trying to keep busy in the midst of all this drama/trauma. It’s affecting my stress levels and blood pressure which I don’t want to start becoming a problem.

My hormones are also all over the place like ridiculously so. I’ve just had a 17 day cycle and the one before that was 22, before that 35 days. The past month I was either bleeding or building up to a bleed. Honestly I’m exhausted. The doctor is sending me for an ultrasound as there is a chance of cancer at my age and it’s always best to be on the safe side. They are also upping my hrt in a week’s time. I’m hoping that will help.

Tomorrow should be an exciting day as my daughter and I are traveling to Manchester to meet with a whole load of other PTEN gene disorder sufferers. I’ve been Facebook friends with a few for a while so it will be fab to meet them in person.

Sugar and booze wise I had a really tempting moment with the sugar just today. My husband has taken to having bags of chocolate around when he’s working, giant buttons that kind of thing. Normally I’d just dip my hand in and take one. In fact that’s such a subconscious pattern I almost did reach over!! But I didn’t. Still on the straight and narrow!

Fab sugar free find of the day has been a sugar free Tumeric Latte mix, it’s lush!