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 & oophorectomy part 3

I’m three months post op now and honestly I feel better than I have in years. I’m so glad I had the surgery. It sounded drastic at the time but 12 day cycles were exhausting me. I was either bleeding or pre menstrual pretty much all of the time.

The constant hormone fluctuations meant I spent half my time trying to not snap at someone or burst into tears. Now I wake up with energy and look forward to the day ahead. Honestly I wish I’d had it done far sooner.

I’m running more than I ever have in my life, the extra energy had to go somewhere. I’m certainly not an ultra runner but 21 miles in a week feels like a success to me. More importantly I love it, the freedom of being outside, just me and the dog plus very loud rock music.

CrossFit is taking longer to get back to as my hormone levels with hrt are not quite right which is affecting strength but generally I feel amazing so I don’t care.

Here’s to hopefully feeling better and better as I get further away from the operation.

*edit, the op wasn’t of course just due to short cycles. I was bleeding very heavily and had a dangerous thickening of the endometrial layer. However being free of the short cycles is absolutely fricking awesome

Healing and sugar free

We are still waiting for appointments for my daughter, in the meantime it’s life as normal and trying to not worry.

Today’s sugar free year observation is on healing, as in the physical kind. I’ve never had issues with skin healing in fact I’d say I’d always been a pretty good healer. Now my bodies ability to repair tissue is excellent, my hysterectomy incisions knitted over in a matter of weeks, I had no bruising in fact I bruise very little these days. Then there’s the tattoo I had done a week ago, it’s my 6th and 4th big one so I’m fairly use to the tattoo healing game. This one has healed over in 8 days, all scabs fallen off all flakiness gone. There’s still a little itching and se raised areas but to look at you wouldn’t think it was quite so new.

What has caused this improvement in healing I can’t say, it could be the lack of sugar though it warrants saying I never had a typical western diet of junk food so never had a high sugar intake. Plus although my “added” sugar intake is zero my actual sugar intake (from fruit and other whole food sources) is the same as it ever was.

Perhaps that’s the reason, when I cut out all the extras I replaced them with fruit, fresh peas and other fruit and vegetables. My fruit and vegetables intake is higher than it’s ever been at around 8 to 10 portions a day. Whatever the cause is it’s certainly a happy side effect.

Waiting for consultants- Cowden Syndrome sucks

Sorry for the long delay in blogging. I’m not feeling especially chatty at the moment, my daughter has some breast issues which I can’t discuss in detail but could range from the very serious to the not at all serious. She also had a bleed in her retina which again could range from serious to not serious. We are waiting for appointments with consultants to try and establish what is going on. I hate the waiting, I hate Cowden Syndrome, I hate that we get to a period where things seem calm and then she has a whole load of new things to worry about. I hate the fear. I hate that she and I are both looking forward to seeing the breast surgeon as we can at least then have the conversation about how old she needs to be to have a double mastectomy. I hate that at 15 she’s in a position where she’s looking forward to such a major surgery. I hate that once again we are heading into Christmas worried sick. This is the reality of Cowden Syndrome.

I’m still persevering with the challenge aside from a cheat day at the cinema that my son offered to pay the penalty for. It’s important to me keep fundraising, it’s important to me to think that one day there will be a cure or treatment and she can just live her life, one not without worry but with normal worries.

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