Adjusting to change

Adjusting to change - My notes in hindsight:

“Things may never go back to normal, you may need to embrace a new normal. And that’s okay. Different is the new normal”

These last 2 weeks (as I write this blog entry) we’ve actually been able to get out of the house and meet up with other mums and their children - and even go to a farm for a family day out. (Lockdown restrictions are easing in the UK.) And it hit me just how much we’ve had to deal with change in this last year. I think we underestimate how well we can adjust to change as humans. But I also think we should be giving ourselves a pat on the back too!

And the truth is that even when things feel new and overwhelming, it will get better. And you WILL find a way to not only cope, but THRIVE.

Certainly at the time of Arlo’s CF diagnosis I remember feeling overwhelmed by all the added elements that we had to squeeze into our days and weeks - the physio, the meds, the hospital appointments, the pharmacy trips - it felt so overbearing and all-encompassing. A lot of the time it did feel as if our lives would be ruled by CF for the foreseeable future - our days just filled with CF ‘things’.

But those ‘things’ DID become our day to day. They just became part of what we do as a family with CF. I wouldn’t go so far as to say it gets any easier, because keeping these CF-ers healthy is HARD WORK. But I will say to anyone out there wondering how they will manage with all the additional elements that a new diagnosis of CF brings, it won’t feel so all-encompassing and overwhelming forever.

And now we’re out of lockdown - and Arlo and I can finally get out and enjoy my maternity leave - I know it will require another ‘gear change’ to work out how to manage the day to day CF things whilst we’re out and about. But with a bit of planning and managing the risks, we will be getting out there and doing it all! And soon it will become our normal.

Seemingly unmanageable things do become manageable with time.

Here’s an excerpt from my diary where I discuss this:

Thursday the 3rd September 2020

Arlo’s age: 5 weeks and 1 day

Thoughts at 2am:

• Can’t believe he’s been here 5 weeks

• Can’t believe how perfect - and gorgeous - he is

• Will his eyes stay blue?!

• Wish I could somehow measure how much milk he’s getting! Breastfeeding is so lovely but not good if you feel the need to know exactly how many mls have gone in!!

• Wish our house sale was progressing - surely we deserve some luck there?!?!

• Need to stop eating about 3000 calories a day (I pretty much eat every time Arlo feeds!!!)

• How can I extend my maternity leave?! (There’s no way I’ll be ready to leave the little man at 6.5 months!!!)

And as I type the above, it is striking me how totally unrelated all of the above is to CF.

So it’s not always endless thoughts about CF!

I guess at the beginning, right after Arlo’s diagnosis, there was so much to take in, so many new things to build into our day and so much we needed to do for our little man, that it did kind of take over my mind. All my thoughts, worries and energy went into what we needed to know, the things we needed to do, the hospital appointments, the pharmacy prescriptions, etc. etc. It felt like such a LOT - so overwhelming. As if it would never feel manageable. And everything in this diary has been CF related in one way or another.

But I feel like we’ve hit a real turning point this week. It feels less overwhelming. It’s not easy of course - pep and antibiotics are still the hardest parts of our days - but it feels more manageable.

So this is a good sign! It is becoming our ‘normal’ and I obviously feel comfortable enough about the CF to start worrying about the same things all new mums worry about!

We are not dictated by the CF anymore, it’s just a part of our lives now. And that’s okay! In fact that’s great! This is when we can start to thrive and live our lives again!