I’m not OK but I’m OK…


Yesterday my husband called me bionic. And today, my friend told me that I was one of the bravest and positive people she knows. Both those comments left me feeling humbled. Their kind words, they made me smile. As I was hugging my friend goodbye, I saw my phone light up – an email from the doctor. I cried the whole way home.

Right now, I’ don’t feel worthy of those words. I certainly don’t feel bionic, or brave or very positive. At pick up, one of the lovely school mum’s said she read my last blog post on my health, that she’s here for me, any time, anywhere – all I have to do is ask. She blew me away. H has only just started there but yet we have be welcomed with arms wide open. What a support network. I thanked her so much for her kindness. I told her I was OK. I am OK. I’m always OK.  I’m always smiling.

But as I got into the car, tears started streaming down my face and I had to bite my lip hard to prevent H from noticing. We put music on and sang the whole way home. Where my husband greeted her so that I could go to an event. The launch of Rachel Riley’s new collection. Once again, more crying en route. Maybe my period is coming. I’m not normally so hormonal.

Yesterday, 40 hours into my fast, I felt great. I felt invincible. Nothing could get me down. I walked over 12,000 steps and 21 flights for the experiment the doctor was carrying out. He was baffled at how well I was doing, as were my family. I get a real kick out of proving people wrong, especially doctors. It makes me quite proud.

But today, I feel so low. And that’s not like me. I’ve said it before, and I’ll say it again. I don’t want pity. I don’t want you to empathise, it’s not worth it, there’s no point because I’m ok. I write because it’s cathartic for me. And sometimes people ask, I’m not trying to seek attention. I write to share my journey and raise awareness to Brain Tumour Research & The Pituitary Foundation.

I know it’s OK to not be OK. But I’ve gotten to a point where I just don’t understand. Why does this damned thing keep growing? Why can’t I just be a simple case?  I mean, if I was, everything would be manageable.  I know it’s good to be unique but why can’t I just be ‘normal’ for once? Why can’t I receive some positive results? Why can’t I just live *one* day without a headache.  I’m tired of not being textbook.  Yes, it’s good to be different… but not in my eyes right now.

For 4 years and no improvement.   It’s “much bigger” he says. Why? It’s shit. It’s fucking shit.  No answers.  Yes, I am lucky, very lucky. Yes, it could be worse. But today, I’m struggling to see past that. I want to give H a sibling. I would love another baby. I’m broody. I’ve always been a believer of it happening when the time is right. But today, I’m feeling low. There has been no major breakthroughs and tests are now going to be weekly and let’s face it, no one wants to be a guinea pig. We’re no closer to finding out if I have that tumour on my pancreas (insulinoma) and the brain tumour (prolactinoma) is being ever so stubborn and the tears, they just keep coming.

But you know what…. tomorrow is a new day.  And I’m going to do my damned best to put my positive pants back on with a great big smile to accompany it.

*Disclaimer* – this was written last week before it was properly shared.  I am now OK and getting back to my usual perky self xx