guess the VHLer

I don't know what other things the people in this space might have fallen to them. But I reckon that of us sitting here are all guessing who has what they have. How 'well' we are. How disabled do you look and is that because of a tumour? 

Did you lose that eye first and then found out about this or did you know and it's inevitable? 

fasting and other advice

I have clinic today. So perhaps when this regular potential life changing might happens my disease is more on my mind. Tits night then explain why, with 2 relative strangers, a woman at choir and a TA at work I've said more about me when asked my recovery is going. 

One listened with care and interest and reflected on how I am accepting, impressed that I came across as close the three Buddhist ideal she strives for. The other asked if I'd tried fasting. She'd heard that helps and stuck to this advice when I explained it was genetic. If only the Drs knew! I almost told her about my 3 weeks of starvation level not eating when the cyst was crushing my brain stem. Kept hydrated and enough mineral stuff in the form of tablets and the odd mouthful of something. That didn't change the tumour. But of course I smiled and thanked her and made my excuses to leave. 

I worry that I could find myself monitoring my food too much, taking away the joy I find in food and suddenly being someone who stresses about what I eat and drink. I don't think that is how I want to live. 

Let's hope my day is a good one. 

You can only work with the body that you arrive with

 There's a lovely, lively lady who does roller derby with me, we're both just as useless as each other at skating backwards. She has been so kind and thoughtful about my return. And she says that, and that's all I've been able to do. Tears when I feel lots of feeling, because this body isn't the same. 

And I've had some mind wandering about what the impact will be if I need more surgery,  because that will keep happening and I can't keep bouncing back and this time I still haven't. 

And then the hiccups, most days, once, could be 'normal' could be something on my brain stem. That's the thing with VHL, who the fuck knows. Could be all sorts, but as unlikely as it sounds, that's not a leap of logic. It's VHL logic. 

sigh 

Rolling back in

 It was on my list of recovery goals, and today I went back. Much more emotional than I expected, each time I referred to the length and difficultly of the recovery compared to other ones I welled up. The team were very supportive and kind and I did feel like I was slower, wobblier and I didn't get through the full 2 hours, but I did it. My neck does now hurt a fair bit but hey... better than not doing it at all.