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.

Christmas, hospital and Charlotte’s new hair.

Christmas was lovely and I took a few days off the sugar free. In fact I took 5 off, not because I was stuffing my face with quality street on an hourly basis but I had a few meals out and social engagements and really don’t want to that killjoy demanding sugar free this and that. I’m happy to pay the penalty in these circumstances and will be popping £100 into the charity pot. Generally I’m struggling with this sugar free challenge, it just adds such an extra element of hassle into daily life which is starting to wear me down. I will stick with it till June though, it’s not that long till the year is out. I’ve said it before but last year’s CrossFit challenge was so much easier.

Charlotte update – she’s doing ok, chronic fatigue is kicking her arse as is postural orthostatic tachycardia syndrome. It’s really difficult for her. She also has an operation coming up in March which she isn’t exactly over the moon about. She has a few tumors which the medical people are certain are benign but they need to come out, just to safe and because them being there could make it more tricky to spot something serious. We were at hospital yesterday arranging this.

Another day another waiting room

She has had a few surgeries across her life and always has a dreadful time with the cannula and with throwing up after. Oh my is she sick afterwards, violently, for hours and they’ve tried everything to prevent/stop it. Nothing as yet has worked. So she’s not a happy bunny and left hospital quite stressed. We did the sensible and mature thing and went home to shave most of her hair off and bleach what is left.

Punk rock girl!
She’s so cool that kid

Other than that I don’t think there’s much news, my eldest is moving into a place of his own which is very exciting, we adopted a cat we literally found in our bins, half starved poor thing. Seb moving out and the car moving in aren’t connected though swapping kids for cats could be a plan.

Bertie the bin cat

As always 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

Hysterectomy positivity, why and how it relates to Charlotte

A few friends have been surprised by my attitude towards my hysterectomy. There are a few reasons. Firstly I was utterly fed up with bleeding all the time. I was tired and drained. I also worried about the risk of the thickening endometrial layer flipping into malignancy. So to a large degree it was a no brainer.

Now once this was decided I could have taken 1 of 2 approaches, I could have become very distressed by the whole the matter or I could take it as positively as possible.

Here’s the thing, my daughter knows already that unless a cure is found for Cowden Syndrome and PTEN disorders she will have to have the very same operation. Her risk of endometrial cancer is too high to not. She will be far far younger than I have. Most likely in her 30s. If she saw me breaking down how would that affect her? I won’t let her worry any more about the future she faces than she has to already so I’ll continue to focus on the positives of this change.

Plus more periods or pms is definitely a reason to celebrate!!

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

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

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