Wednesday, 1 July 2015

On normality

I've been wanting to write this post for a while now but I've been too busy. Busy being normal.

From about Week 18 of my pregnancy, once the morning sickness finished and I could eat enough to get some energy and my blood pressure came up enough that I didn't feel like passing out after 10 steps, life has been resoundingly normal. And it is fucking awesome. 

I had forgotten what normal was like. Normal is going to work and not coming home exhausted. 
Normal is not needing two rest days to get through the week. 
Normal is being able to go out both days on the weekend and not feel shattered. 
Normal is feeling happy pretty much every day, instead of just when I've had enough rest. 
Normal is amazing. 

Being off my leukaemia drugs because they're unsafe to the baby has shown me just how much I've had to change my lifestyle and that what I thought of as normal really truly isn't. The 'new normal' is often talked about amongst the dealing with CML or liver transplant circles and it's taken this medication break to realise just how true that is. You feel pretty shit when you first start the medication. Lots of side effects and thing to make you feel awful. Then when that wears off after a month or half a year or however long it takes you start to think you're getting back to almost, but not quite, normal. It's amazing how quickly the brain can adjust to the new energy levels and while you know you used to be able to do more with your days you just accept it as a change. 

I've embraced every minute of normality while it's returned to me. It's so precious. I know MR enjoys having the true old me back as well. I joke about staying pregnant forever. Just second trimester though. 

Normal is beginning to come to end. A few weeks ago my feet started to swell, then my ankles and calves. Then my fingers and hands. And while I'm still enjoying the energy, I'm starting to get a bit more tired and a lot more uncomfortable, mainly in my feet and hands. My blood pressure is fine so that's good but I'm on close monitoring now due to the higher risk of pre eclampsia in someone who's had a liver transplant. Close monitoring involves lots of trips to Perth and back which are starting to get wearying and it's likely I'll have to stay down there soon, even though I'm only 31 weeks. 

My leukaemia cell levels have started to rise too, which of course is expected when I'm not on the medication. I've never actually reached 0, only getting down to about 0.027 (which is nothing you say but while there's a trace its risky to go off the meds) and it's now back up to 0.8. It needs to stay under 1 while off meds to keep the risk of it getting serious as low as possible. So I'll be back on the medication sooner rather than later. 

I've started to grieve a little bit in advance of losing myself again, it's been so nice to be back to normal. There's always that lingering hope for the miracle that it might just disappear. 

I'm also a bit worried about how I'll cope with recovering physically from birth, dealing with the sleep deprivation of having a newborn and having to go through all the side effects of the meds again and the fatigue it causes. It's not that I didn't know I'd have to go back on it after giving birth, it was that I'd forgotten what it was like to have regular energy levels. 

Regular energy levels are amazing people. Never take them for granted. 


And just so you're not feeling depressed by my post, here's a photo of my big fat baby at 29 weeks who is measuring on the 90th percentile and looking very healthy. It's all worth it. 


2 comments:

Wendy Sice said...

Cute baby pic! So exciting! I was wondering how your pregnancy was going and didn't think it would be a short answer; I was right, lol.

The energy burst is surprising- I don't remember having that when I was pregnant. I would love to have some decent energy, and am starting to think there might be a thyroid issue going on...But back to you! So glad you are enjoying this time in your pregnancy. Hope you don't get too swollen because that's not fun! xx

Bron said...

Wow what a journey for you and your family.....so glad you are in a place to enjoy this precious time. I am sure you will overcome all the obstacles that come along and you will be a fantastic mumma.xx