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

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

More hysterectomy tales, a nasty illness, adopted cat and a cheat day!

It’s been a tough month since I posted last. I was coming along amazingly after the hysterectomy, walking every day starting to get on with life. Then two weeks after I came down with some form of illness. It’s hard to say if it was a virus plus an ear infection or a really serious ear infection. All I know is that for 6 days I did nothing but sleep and throw up and my balance was so off moving was like I was drunk. I was sleeping for around 18 to 20 hours a day, the time I wasn’t asleep I was curled up on my left side feeling so unwell I was wishing I was asleep. It was awful, By day 6 my husband was so worried that he called an emergency doctor as standing up involved falling over basically every time. Because I had had an operation so recently she too was concerned in case I had a sepsis brewing somewhere. I ended up in hospital. Thankfully they were able to establish that I was in no danger, they also figured out that as part of what was going on my vestibular nerve in the inner ear had been affected hence the inability to stand or move. I have had a chronic ear infection for months so it’s likely that had spread. During that week literally the only thing I could hold down was a couple of slices of white bread a day. I must admit I was not considering the challenge at this point, my body was exhausted from surgery and then illness. I think this is an allowable time to not try to read labels.

After antibiotics the worst of the illness seemed to clear up though my inner ear is still affected, I was back at work during the tail end of feeling awful which was around 4 weeks post op. I also had a phd proposal to get in to the university within 5 days, a completely new one I had not even started. By the end of that week I was exhausted and by the end of this last week with work, working more on my proposal, exercise and homeschooling I’m pretty exhausted too. I’m glad I’ve managed to get back into gentle exercise at the gym and running (run/walk/run), this past week I had 2 gym sessions and 2 runs which 6 weeks post op I am happy with.

I am functioning ok during the day but by the time my day ends at around 7 and I have time to sit down all I want to do is go to bed and I end up asleep by 9. It’s hard to tell if the tiredness is a post infection issue, a post op issue or a combination of the both. I am hoping it will abate soon as my life is not one that has many opportunities for rest which makes dragging myself around slightly miserable.

Monday ended up being a cheat day, I had Charlotte at the hospital in Newcastle when all of a sudden I came over so shaky and weak that I had to have some form of instant energy. I have paid the £20 fine into the fundraising in accordance with my rules!

Oh and we have adopted a stray we are calling Bertie, when I say adopted I think he just decided he lived here.

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