Having CF in my life is constant. There is no escaping it, it’s here and until a cure is found it isn’t going anywhere, and whilst there is no taking a break from it, I took a much needed break away from everything else CF related, hence my lack of interaction, blogs and Facebook posts.
I felt my life was slowly being consumed by all things CF, so much so that it was starting to get on top of me and I was spending more time worrying about CF than I was concentrating at work or more importantly enjoying time with my boys. I was adding pressure that I didn’t need and for those that know, CF is hard enough to deal with on its own without those added pressures.
I’ve said before most days CF is far from my thoughts, but there are times I find myself wanting to scream, when the most simple of tasks is made so difficult and complicated by CF and especially when CF takes away so much.
I find myself envious of anyone who can just get up and decide they are taking their kids out for a day without any preplanning or having to orchestrate an early start to fit in treatments before going, or those who can finish work and enjoy a trip to the park with their children. I would be happy with just having time to sit down and play with Chester and Oakley and their trains and cars.
Treatments are time consuming and the majority of my time midweek before and after work is spent doing nebulisers and physio. I feel like my time is being stolen and with two children growing up so quickly every moment with them is precious.
Over the past three and a half years since CF fell into our lives there have been many ups and downs, I’ve shared many of them already, and I am in no doubt that there are many more to come.
The most important thing I’ve learned is that it’s ok not to be ok. No one can be ok all the time, it wouldn’t be normal (in my opinion) if life kept hurling things your way and you never faltered once.
Don’t get me wrong, its incredibly hard to say you’re struggling and not coping when you are meant to be the strong one, but you must! Your own mental health depends on it and when so many depend on you, you have to be well mentally and physically, otherwise what use are you?
The hardest thing for me isn’t necessarily getting the break from CF it’s managing the guilt I have for feeling I need a break in he first place, especially when I know my child never will get that break and will have to pick himself up and carry on regardless of how he feels.
So as I sit here on the train, writing my blog, drinking coffee in a rare moment of peace and quiet, I find myself looking at everything I have overcome and how far my family has come and I am forever grateful to all those who have been by my side for the past three and a half years, and who have picked me up when I’m down, have told me to dry my eyes and crack on when I’m balling and to those who have listened and supported me when I’ve needed to moan.
It’s important to recognise when things are getting too much, it’s important to act and it’s important to take some time out.
Take that break, get yourself back on track…..you are needed!
9 thoughts on “Sometimes we just need a break.”
Always here for you sll xx
I know and I can’t thank you enough xx 😘
I know the feeling! Trying to juggle getting Keir to his after school stuff and fitting Ellis’ treatments in becomes all consuming. We are off to disney paris in October week and i am already worrying about packing medicine, germs on plane, pool cleanliness – and it hits me that most people don’t have to. But, as you say, we just need to.
You will have an amazing time! But yes the prep is a pain in the butt 😦
I am a psychiatric nurse and follow the Orkambi campaign and my son has just done 10 events to raise £3500 for CF unit at Gosh, I am available to chat when the going get tough, just DM me at #suzybendave
That’s very kind, thank you 😊 and that’s fantastic fundraising 👏🏻
Other people can easily overlook the pressure of treatments every morning and evening. In our early CF years I couldn’t understand why that part of our family was always so much later to arrive places than the rest of us. I get it now, of course.
Take care of yourself. It’s really important to be yourself and not ‘just’ the CF Mum’. Take the opportunity to get away when you can. You will better be able to take care of your family when you get that break.
Thank you x yes very important to take a break. I often turn down events and get together a because fitting treatments in would be to difficult xx