Cystic Fibrosis, Self

Self Esteem and Advocacy

I often believe that every one secretly hates me. It happens when I take Joseph to nursery and I have to speak to one of the nursery staff. I have a ball of anxiety in my stomach because I believe they are all sneering at me behind my back or just waiting to whisper about… Continue reading Self Esteem and Advocacy

Advertisements
cystic fibrosis, art, 65roses
Creativity, Cystic Fibrosis, Self

The Elephant in the room #cf

The Elephant in the room He's been there since the day you were born but we were unaware of him until we received an unsolicited knock on the door. He must have slipped in with those nurses while we were off guard Ten foot tall, grey and looming. An unwanted gift is no gift at… Continue reading The Elephant in the room #cf

Cystic Fibrosis, Family

Update on Joe #cysticfibrosis #sensoryprocessing

Hi everyone, thought I would give a bit of an update on Joe and his health and what we've been up to! Last week Joe had his bi-monthly clinic appointment with his team at hospital. It was a bit traumatic for us all as not only did he have his usual appointments with the dietitian,… Continue reading Update on Joe #cysticfibrosis #sensoryprocessing

Cystic Fibrosis, Photos

Update on Joe

As you may have seen on Rob's Facebook page Joe has been a bit under the weather recently. As much as I love Autumn and Winter along comes with it colds, bugs and infections and therefore more trips to the hospital, more medications and more sleepless nights filled with the sound of our little man… Continue reading Update on Joe

Cystic Fibrosis, Family

Update: Cystic Fibrosis, sunshine and nursery

2016 so far has not been the best year for us, although we have had some great moments and our two week Easter holiday was fantastic, health wise 2016 has been and is continuing to be a challenge. Recently we have had to face a number of challenges, Joseph has been in and out of… Continue reading Update: Cystic Fibrosis, sunshine and nursery

Creativity, Self

What I’m interested in this week

While I've been under the weather I've been given more opportunities to sit around and look at the internet! Here are some of the things that have caught my interest this week: FITBIT  Robin has treated me to a Fitbit- I've gone for a Fitbit One, it's small and compact and clips onto your pocket… Continue reading What I’m interested in this week

Cystic Fibrosis, Family, Food

Update on Joe #CF #foodanxiety

Hello Everyone, This year so far has been a bit of a roller-coaster, what with moving house, charity balls, birthday extravaganzas, the usual cystic fibrosis shenanigans, re-decorating etc etc etc we don't know whether we are coming or going round here some days! I have found it very stressful recently trying to manage all the… Continue reading Update on Joe #CF #foodanxiety

Cystic Fibrosis, Photos

GI problems, Cystic Fibrosis and Gratitude Friday

For today's gratitude Friday post I want to show gratitude for CF suffers, family members of people with CF and CF charities that put their stories out there on the internet so that other people who are affected by Cystic Fibrosis can gain hope, encouragement and support. So many times as a parent to a child… Continue reading GI problems, Cystic Fibrosis and Gratitude Friday

Cystic Fibrosis

Disability Living allowance and #CysticFibrosis

Recently we reapplied for disability living allowance for Joseph, I found it quite a difficult task and we had to go through mandatory reconsideration in order to get the result we needed. I did a lot of research on line as to how to fill out the forms and what information to include so I… Continue reading Disability Living allowance and #CysticFibrosis

Cystic Fibrosis, Food

Update on Joe: cystic fibrosis, Gerd and dysphagia and Food anxiety

Hi Everyone and happy New Year! Hope you have all had a great festive period and are fresh and ready for a new year! (she says with a strained smile and twitching eye!) I shall have to do a post on our christmas shenanigans at some point but I am yet to have gone through all… Continue reading Update on Joe: cystic fibrosis, Gerd and dysphagia and Food anxiety