Cystic Fibrosis, Family

Don’t get too close- you might catch it!

Hi everyone,

Everything has been a bit rubbish round here for the past….I don’t know…..FOREVER! The saga of the never ending chest infection/ ear infection/illness continues and now not only is Joe on his 4th week of extra antibiotics, coughing like a trooper, and not eating a lot (no change there then) I am also on antibiotics for a chest infection.

Joe is a seasoned pro at this illness malarkey so he just gets on with life and doesn’t seem to let it bother him too much, sure he coughs and coughs, he stops eating and he sleeps a lot, but when he’s awake he just pretends nothings wrong and runs around like the crazy toddler he is.

I on the other hand am not a perky bunny. I am not used to having chest infections and have spent the past week wanting to curl up into a ball and sleep forever- if I could actually sleep that would be a bonus. Not only have we had the usual chesty cough, snotty nose, aches and pains, sleepless nights, we’ve also had earache, tummy ache, nose bleeds, mouth ulcers and even sticky pink eye to deal with!

not a happy bunny

I have been full of woe and self pity the past week especially, looking after a toddler is hard. Looking after a toddler who has a chest infection and cystic fibrosis and eating problems while you also have a chest infection and your eye is stuck together and your tongue is covered in ulcers is my definition of hell on Earth.

Luckily I have a wonderful husband who takes over the second he walks in the door, pretends that I look beautiful even though I know I look like an extra on the walking dead, steps over the piles of crap all over the house politely ignoring the mess and lets me crawl up into bed and hide away for a few hours- plus sleeps on the sofa so I can get some rest. (and also because he doesn’t want to catch something nasty off me.)

Me-sprucing myself up before rob gets home

I am also very lucky to have Rob’s dad who has taken Joe for two mornings this week so I can curl up on the sofa and moan in peace. He has entered the plague zone twice and I am really hoping he’s not been infected too, plus he and Rob’s mum spent Easter Sunday afternoon in hospital with us- AGAIN after being invited round for what was cleverly disguised as Sunday lunch but actually turned out to be a trip out to the children’s observation unit! YAY for Easter!

my front door

So all this lying around, moaning and coughing has got me thinking. Initially I was thinking things like “Why God hast thou forsaken me!!!!” and “Just let me die!” but after a few days I’ve had time to reflect.

Firstly I’ve been thinking about what a hero Joe is. His attitude to life is amazing. He has treatment after treatment, cough after cough, illness after illness and he never seems to get down or question it or wonder why life isn’t fair.( I know he hasn’t got much in the way of philosophical thought- he is only two and a half, but still, he just says matter of factly “I’ve got a cough” and then runs off to watch scooby doo.) When I am ill with a chest infection or cold I do feel really sad, not just because I feel sorry for myself, but because I know that Joe must feel like this a lot. And I know that when he gets older the way I feel when I feel a bit crappy is the way he might feel most days.


And it just makes me love him even more.

Secondly I have been thinking about how much I take my health for granted when I am not ill. Just the ability to breathe through your nose, be able to walk a few steps without coughing, being able to swallow food without pain- these things are amazing and I never even think about how lucky I am until It’s not there any more.

Thirdly I’ve realised how reliant Joe and Rob are on me being fit and healthy. I often feel self conscious about being a stay at home mum, and feel like it is not a role that is valued very much in contemporary society.  But as I have been ill this week despite Rob’s best efforts I have watched our house fall apart around me, we have no clean clothes, there’s washing up to be done, there’s not enough food, don’t even talk about the bathroom! Joe has survived mainly on biscuits and has spent the majority of everyday watching TV. This is not a negative reflection on Rob by any means- he has been great but there is only so much one man can do in the few hours after work.  Joe’s ill and cant go to nursery but there is no one else to look after him in the day (apart from the two mornings grandpa has kindly given up this week) and even though I’ve been hardly able to stand I’ve still had to do Joe’s physio, medications, treatments, I’ve still had to make sure he’s washed and clothed and fed (ish), Iv’e still had to order his medications and take him out for fresh air and hug him when he’s upset because- who else can do it if not me? So it’s made me proud of the work I do everyday. I am not just a stay at home mom, I’m a cleaner, nurse, therapist, carer, advocate, educator, cook, handyman, counsellor.


So I’ve decided that when I have eventually kicked this infection to the curb I’m going to try and value my health a bit more- mentally and physically. Rob has brought me a Fitbit so that I can try and be more active in the day, I’ve started my headspace mindfulness meditation again and I’m going to do my best to not get so stressed out and if I’m honest anxious and depressed about things- self care is just as important as the care I have to give to others.

Anyway, that was a super long post! thanks for reading if you still are!





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