Week 3 post treatment

Hi again lovely people

I thought I'd post another update in case it helps others (all your posts are so helpful to me). 

I'm midway thru week 3 and here are some reflections and thoughts and stuff I am learning:

• My days are largely spent on feed/meds/oral care and resting. I'm getting maybe three hours of energy in the morning and I have to be careful not to overdo it. Fatigue is very real. 
• It's ok to use a wheelchair in the supermarket for a bit of normality!
• It's hard to keep hearing that this is a marathon and that it's going to take lots of time, but looking back each week helps me see how far I'm coming. I've put a 'weeks since treatment' widget on my phone which helps me. 
• Worries about recovering my swallow are easing (more below)
• Secretions are still a real pain - mainly super frothy when I speak, worse when I'm tired. Lots of spitting up still. Sipping water helps. I'm less reliant on the nebuliser now. 

A few thoughts on my swallowing journey: 

• I was v worried about this so slowed down my expectations and focussed on sipping water first. A week later I felt I'd mastered the art, and started to think about little tastes of smooth yoghurt. I'm taking it slowly. It is helping.
• I'm still on 5 fortisips and all meds thru my peg and realise this may be the case for weeks if not months.
• I wasn't expecting my taste buds to be so messed up - nothing tastes of anything. But the dietician told me this yesterday which was super helpful: 'Think of it like weaning a baby, your taste buds have got to try something multiple times before they start to recognise it, and at some stages, a bad taste can be a good thing - it means they're starting to kick back into life! '
• Swallow exercises are hard to fit in but I'm trying to build a new habit. 

That's probably enough for now!

Thanks again everyone 

Polly