Not the best of days/weeks/months

It’s not been the best of times recently and today has just tipped me over the edge.

I struggle as I’ve talked about before with the responsibility of being a carer. I feel the weight of doing right by my daughter, by all my children so very much.

At the moment I’m trying to get her the help and support she needs to not only do well at GCSE but to be able to do A levels. Did you know there is no at home provision from the local authorities for A levels? It only goes up to GCSE. Disabled kids apparently don’t need to have a future or a right to university.

I have a few leads to follow on that and hopefully will get somewhere. But sometimes the fight just exhausts me. I am determined that her disabilities won’t stop her from achieving what she can but by god the world isn’t making it easy. Then there’s her upcoming surgery which makes me sick with worry.

Throw on top of that a few large unexpected bills (there’s the holiday savings gone) a parking mistake that led to a ticket and people being generally mean and I’m just done. I really do try to remain positive and count our blessings but right now I honestly just want to cry, curl up in bed for a week and be left alone.

I wish the universe would occasionally just give us a break.

Spain! Plus a cheat day 😱

We arrived in Spain rather tired and bad tempered and ready to kill each other. It wasn’t the earliest start in the world at 4am but early enough if like some younger Kelly’s you forget to go to bed till 1am! The villa was not disappointing nor is the area, both are beautiful. In the villa we have 2 downstairs apartments and a 3 bed flat upstairs, a pool to ourselves, 2 different outdoor eating areas, 4 balcony areas, can I just live here please?

The grumpiness mainly settled by the next day Sean and I attempted to go for an early run didn’t quite manage it out of the villa fast enough so hit the promenade at around 11.00 yes folks me you friendly neighborhood pasty red head was running in Spain in the middle of the day. After 3 miles I felt rather wobbly and found a cafe. I figured Sean would find me eventually. The rest of the day was spent in the pool enjoying the Villa and exploring Calpe, the older part of town is particularly beautiful.

Monday

We decided to chill for the morning, no running but I swam for an hour then we explored Benidorm, I’ve never been on a package holiday but of course Benidorm is famous as a resort for the party life. It was huge fun visiting almost like a British seaside town but actually sunny! I must admit I’m glad we are in the quieter town of Calpe. Later on Monday while in the pool James managed to crack Sebastian in the face with a pool net, you know the kind that is used for fishing leaves out. The poor guy has a black eye so bad it looks like he’s wearing eye liner!

Tuesday

We spent most of it by the pool and at the beach, that is what we are here for after all the views of mountains continue to take my breath away, it’s the first time in a long while when I’ve been on a holiday where I don’t want to go home.

I even braved going out in a bikini for the first time, oh in at least 2 decades!!!

While here I’ve been trying to keep up with exercise, running 5k in the morning and swimming for an hour some time during the day. Right now I’m sitting in a cafe after finishing my run which somehow was my fastest ever 5k in ridiculous heat!!! I think the cafe at the end helped !!!

Wednesday – Valencia

It’s about 90 minutes drive from where we are so seemed well worth the effort. The city itself is stunning though driving past the bull ring was a reminder of cultural differences. We didn’t have a set agenda as ots tricky with Charlotte we don’t know how well she’ll cope. We had a fabulous lunch which of course I had no idea how to ask what was sugar free, gluten free was hard enough. I somewhat suspect that if I’d been asking for a gluten free sugar menu in an Italian restaurant in Spain they’d have thrown me out. I’ll pay £20 penalty into the fundraising, as I knew I was paying the penalty I had 2 glasses of wine, and cake. I wanted my money’s worth for a day off the challenge!!!

It’s an absolutely beautiful city and I wish we could have spent more time there.

We did have a chance to pop into a CrossFit box and pick up a t- shirt for Seb and I. It was on his must do list! There were such lovely people and have Seb a few tips on how to get double unders.

Thursday

A day spent in Calpe, a run in the morning a hike in the afternoon followed by a swim.

Friday

Spent recovering from overdoing it in the heat on Thursday!

Saturday

Home time!!! Jasper was pleased to see us!

Better-ish

I’m feeling somewhat better today, Generally I actually love my life. There are a huge amount of positives, I adore where we live, I have a very close relationship with my kids because life have necessitated I’m around most of the time and although far from rich I never have to worry about food on the table, or a roof over our heads.

There are times however where I have to work at my mental health, I had to when Charlotte was first diagnosed with cancer and Cowden Syndrome and every time she has a scare. I’m going to have to now coming off the back of my younger sons very serious mental health struggles. In all honesty there were points where I found his difficulties and resultant ways of coping harder than Charlotte’s cancer. With cancer it’s terrifying but there is a very set plan of action and very specific planned outcomes of each stage. The professionals speak in terms of action and reaction and hoped outcomes. With mental health it seems that getting help in the first place is a nightmare and then it’s a case of throw things at a metaphorical wall and hope things stick. For two years in my sons case nothing did. Now he seems to have started to find his way out of the mire. I’m incredibly proud of him for that. Depression is a serious illness and like cancer takes lives. I think people often forget that. He’s doing amazingly to get through it.

Anyway so that leaves me with own brain a touch fried, in the past 3 years there have been more than one moment where I thought I’d lose my daughter to cancer or my son to depression, or lose our relationship.

In a nutshell I need to work on my own mental health, I need to focus in not out. The first step to this is to step away from social media. It doesn’t help, we all know that essentially it’s a highlight reel but even within that is the reality that most people have had an easier life than ours. Not all, I know some amazing strong people who have actually had it worse, but on the whole most families don’t have to deal with childhood cancer, or a youngster life threateningly depressed. Thank heavens they don’t I wouldn’t want them to, but equally I don’t always want reminded how much of a struggle our life has been in comparison and continues to be. My husband and I have often joked that the only break we get is a bone. It’s funny because it’s true. Dark humor for the win!

So I’ve a installed a block app on phone that allows access to Facebook and Instagram only once a day, that way I can check for notices by my gym, share work posts and then step away. Only my daughter has the pin to unlock the block app. If I miss that time period either I wait till the next day or have to load the actual laptop. Who can be bothered doing that?

This means all those spare moments on the loo or in waiting rooms will be filled with reading. I’ve taken this approach in the past and found it highly effective and beneficial.

I’m going to journal again,this is something I’ve also used in the past as a tool to focus on the positive and also found highly useful.

Most importantly I’m going to make time to see friends, this has always been the most helpful to me. To work on those real life connections. As much as I back away like a wounded animal when I hurt I need people. We all do.

Finally I’m going to accept that it’s ok to struggle, we’ve been through a hell of a lot in the past few years and my role has been to hold everything together and everyone up. That takes its toll on a person. Throw in perimenopause and crazy irratic cycles even with hrt and it’s a miracle I can hold a thought. Can I hold a thought? Not sure…what was I saying?

I’ve started this as my bathroom book it’s very funny.

Oh and on a totally different note I keep having “omg I had a glass of wine by accident or popped a piece of chocolate in my mouth, I’ve failed me challenge” dreams. Ugh Catholic guilt has clearly found a way to attach itself to this year!

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

If you’d like to follow me on Facebook that would here:-

https://www.facebook.com/cure4Cowdens

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