Good luck to everyone running the London Marathon today! A special shout out to Mary Donnelly, Catherine Kingston, Liam Mc Hugh and everyone running for cystic fibrosis and @raysofsunshinecc
💪 have a good day and just remember, pain ends so keep going through each barrier with the same determination you had on mile 1 🙌 #LondonMarathon #cysticfibrosis #TeamSunshine
Was in the loft the other day and came across these two relics 😂 the first one, the big black box, was the very first nebuliser I every had back in the 90s! It made such a loud noise that my mum had to put a cushion underneath it and, it pumped air continuously so that everyone I used it, it would fill the entire room with my antibiotic 😆 it would take around 15-20 minutes for the chamber to be clear! In the 00s I used the second nebuliser, the blue one, smaller than the first but still made a noise however this time, it didn't continuously pump air into the room, it timed to your own breath so that none of the antibiotic was wasted! This time it took around 5-10 minutes. NOW I use the Ineb which is a hand held nebuliser, small, hardly makes a noise, times to my breathing & can be easily taken to places! This takes about 2-3 minutes to empty the chamber of my antibiotic! It's crazy to think how far technology has progressed in the last 30 years which makes a long term illness that slightly more manageable! I'm excited to see what the future holds in terms of technology and medicine for CF! #Nebuliser #Ineb #AdvancementsInTechnology #Technology #Antibiotics #BlackBox #CF_Superhero #CysticFibrosis #CF #CFSuperHero #CFWarrior #Fitness #Health #Life #Journey #Cardiovascular #Lungs #LungFunction #Respiratory #Medicine #Treatment #Weight #Goals #MaintainHealth #ImproveHealth #Sheffield #UK
Happy organ donation awareness month!!💛💙
Everyone’s experience is different and mine was a lot of back pain and insane discomfort. One thing that really bothered me once I got my transplant was not being able to get comfortable. I literally was not able to get comfortable for about a month and then some. It wasn’t my incision that bothered me as much, It was my back. It’s something I didn’t think about pre transplant as something that would be an issue once I got the surgery. Probably not something people that are needing a double lung transplant think about too much. The amount of hours you are laid out on a table stretched out apparently can cause months long of pain.
We tried everything to get me comfortable but failed. So this was an attempt to find some relief. I sat in a chair bending forward a little in order to stretch some of my back muscles because of laying in bed on my back the whole time. I wasn’t able to lay on my sides. 😣♻️💜
#lungstoryshort #cysticfibrosis #cfawareness #cff #cfirl #65roses #cfwarrior #posttransplant #doublelungtransplant #newlungs #transplant #lungs #donatelife #donatelifemonth #organdonation #recycleyourself #hospitallife
GOODY BAG 💊
Today I had my cystic fibrosis clinic appointment and it was awesome
Not perfect by any means and not all incredible results, BUT I had some amazing conversations with my physios and doctors and felt 100% listened to and understood. They answered all of my questions and adjusted a few of my prescriptions to make them as manageable as possible.
What an amazing, amazing NHS we have ❤️ wouldn’t be here without them.
Here I am with my goody bag of prescription items that I am genuinely (oddly) excited about. A few new + adjusted items that, with consistency, I hope will contribute some little improvements 👊🏻
And, to top it off, mum and I discovered a beautiful bluebell wood right by our car park 👌🏻
Hope you’re all enjoying the beautiful sunshine ☀️
After almost 5 years doing this fitness thing, I figured I would make a page just dedicated to this lifestyle and my progress. Because why not right?! 😋💪🏼
This is the furthest I’ve run without stopping in YEARS and today is my last day of IV antibiotics. Imagine what you can do if you let go of the limits you’ve placed on yourself!
I contribute this to being in a good place mentally as I look forward to new opportunities ahead and absolutely beautiful weather that could not have been more perfect for this run. Running is more than just physical for me. It’s a mental and spiritual experience and I am so grateful for everything it does for me. .
#cf #cysticfibrosis #nikerunplus #cfwarrior
Thanks to @shazzles_writing
I’ve been tagged to list the movie (or movies) that define me. Except I don’t feel I have a movie that defines ‘me’, although I do have several I have watched multiple times.
What I do have is a song (or ten) that define me. Rules were made to be broken, so here is the #1
song that defines me.
Am I Here Yet? (Return to Sender) by Billie Myers.
It’s one of my funeral songs (I have 4 funeral songs all up – so either bring your dancing shoes or noise canceling headphones – your call - but note there will be an audience participation singalong 🎶) But I digress.
From the first moment I heard this song, I felt like Billie had been peaking inside my head. In particular:
“Sitting around in my imagination using someone’s else’s logic – for loose change.”
“My emotional bends are doing somersaults
My head is where my feet should be, on the ground
I chose the path of most resistance
Had to be different, made my mark but then I crossed the lines
You read between”
“I've been told I'm exceptionally ordinary.”
While I’ve never written a letter to my future self asking for directions, it sure seems like something I would do. And I’m pretty sure if I had, it would have bounced back.
A little #tbt
to when Mila was just 5 days old, and we were living in the NICU at CHOP.
Climbing in the afternoon after some checkups in the cf clinic. Weather is getting brighter everyday and there's nothing better than climbing in the sun, enjoying the day, being in nature, being near water, strengthen the relationships with friends and just being thankful after climbing some good yet challenging routes.
My diet was a little bit off the past few weeks, I got a little bit off track, dropped the ball so to say and lost some weight, but I'm not perfect and everybody drops the ball from time to time. But that doesn't mean that I failed my goals, as long as I decide to recommit to my goals. Fail, recommit, fail, recommit, fail recommit, life is not linear, it's cyclical and just as there's winter and summer, there will be stronger and weaker days. And if you decide to recommit on your deathbed, then you're a success. Remember, a phoenix also burns himself before he's reborn again.
#projectsport365 #climbing #klettern #recommittment #nature #natur #kraxln #sommer #wasser #klamm #cf #cfwarrior #cfking #cysticfibrosis #mukoviszidose
Hi there! Thanks for checking in on my ninja training and progress. I'm grateful to be able to participate in such an intense physical activity despite fighting CF's effects on my body. To learn more about my daily life with Cystic Fibrosis or to donate to our fundraising efforts, please check out the link below!
#ninja #anw #ninjatraining