Thursday, June 16, 2011

Food or Flight

Have finally written down and shared most of what's been going on for me emotionally since the weight went back on, since doing so I've felt a bit sadder, relieved and like I want to go run instead of stuff fat into my mouth.

I don't want to feel ashamed of myself anymore. I cope with a lot, keep a decent house and am a bloody good mum. I deserve to look and feel like someone who cares about herself!

I know there are far worse things happening for people, and overall things are on the up for us here now, but I'm hanging onto this as a reason to be moping and I've gotten HUGE again, and I need to let all the crap go and just get well. So here's letting go (sorry). . Turns out getting fat again has not helped me much and I need a firm grip and to just get back on it.

2 years ago I'd gotten back down to 10.5stone, close to 'normal' for me, and had shed 6 stone total. After going through many referrals and specialists for the boys (mostly Kai) and Sam's company dying I started to use food to keep from feeling worried again.

Started to get back on track again last summer, with Kai seeming to be close to 'just' an ASD DX and Sam in what seemed to be a steady job. Then he lost his job. Kai was referred for genetic testing and my body started messing me about to the point where I could (can) barely move some days - the only chance for real space to myself/exercise I had was running. Sam's colitis got worse and he got chucked on steroids again, which make him a nightmare to be around, and didn't even work.

Finally things started 'fixing' themselves - Sam is now FINALLY being tested for Coeliacs and is on a higher dose of meds so his UC is under control, Kai got 'clear' genetic results, and I've found Pilates is helping a bit. The BIG yay is Sam starting his new job in July, giving me space to get foods back under my control.

Then we had some results we weren't expecting at all. Sam went to the Heart Hospital for some testing last month. Nothing wrong with him, but his dad died in his early 30s of a heart condition and Sam and his siblings were advised way back to get double checked in their late twenties. His brother went in last year and was found to be in AF, has since had a pacemaker with defib fitted, and blood tests have come back showing a fault on the Lamin A/C gene (responsible for disorders like CMP and muscular dystrophy etc). He's on a cocktail of meds and is feeling ill and tired quite a lot. Been unable to hold a job down for over a year.

Sam got clear on all the tests, everything appeared normal, and we heaved a sigh of relief. Until the genetic tests came back and show that he has the fault too. Looking into the letter they've sent, it's pretty shit. There's a 50/50 chance each of the kids have it too, and it's the first recorded 'fault' in this particular place.

So now we wait each year to hear whether it's started weakening his heart muscle yet. I can't stop looking at the kids and wondering who of my beautiful children has been burdened with this stupid crappy gene, hoping my stubborn genetics have won out somehow. 

Sorry for rambly nature, if you've read and/or understood, you're a bit amazing!

1 comment:

  1. Ok, sat here just ever so slightly crying.

    I do so hope everything comes back ok with Sams heart findings. And even if they don't he has the most FAB wifey he could ever wish for to will him through whatever he has to go through :o)

    Heart felt posts are hard on the brain box, huh? Makes you realise what's going on when it's written down.

    You WILL be good hunni, you KNOW you can do it. Just jump back on that wagon and hang on tight.
    I'll be jumping on-board leave some space for me :oP

    *huge hugs*