‘When did she tell you?’

“When did your mum tell you she had CF?”

I’m not sure she ever did or, perhaps, she constantly did, it is hard to differentiate these two things. From the moment I could walk, before I even uttered a sensical word I knew not to touch her medicines or equipment. She told me they were important for her health but dangerous for mine. She would sort through her tablets, explaining what each one was for. That stayed the same most of my life. She would explain that she had to be admitted to hospital sometimes because she is “different to other mothers” she has “CF” and that means “sometimes she is sick and she has to let the doctors take care of her” and this was enough for me. It was enough to me until I was 6 or 7 and my uncle, who also had CF had just received brand new lungs. He was so sick just before the transplant, unlike my mum who was running around after me and swimming every week.

She thought this would be his big break. His freedom. His life. We all did. We rooted for him. A few weeks later he died.

I couldn’t understand any of it. “How could he die? The operation was supposed to make him better? How could this happen?” It was during this period I started to think: “If he died, could my mum die too?” She explained that he was much more ill than she is but there is a serious probability that one day, she too will be that ill. Initially, I was so shocked I couldn’t ask anymore questions, despite my parents best attempts to openly talk about. Eventually, I just stopped believing it. She was too strong, too healthy, too stubborn to ever be that ill.

There were moments that made these words echo in my ear like a cruel joke. Moments when I saw her slip through my fingers and barely just make it back.

Eventually, as more of our friends and family got more and more ill and passed away I realised that maybe it didn’t matter how strong or stubborn or lucky she was.

Those dark thoughts were part of normal daily life and learning to compartmentalise at times was important and often necessary.

-Christina.

Changing prospects and priorities.

To read the beginning of this post head on over to http://cysticfibrosisnewstoday.com/ and check it out!

……..I want her to life until she cries, see the beautiful sights of the world and wake up each day happy and excited for the day ahead. I don’t particularly care if she gets a huge tattoo of something I hate or if she decided to become a professional juggler as long as she is happy. Nothing else matters. Nothing is as valuable (or invaluable) as health and happiness.

I have less opinions on little things that don’t matter. I just want to be part of the beautiful journey that is her life, however I can. I am just grateful I am still here to share precious moments together. To laugh, to cry, to live.

-Ali.

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The five things you only understand if you have a friend/family member with Cystic Fibrosis.

  1. The constant infection.

When I tell people my mum is currently in hospital they usually ask ‘Oh no, why?’ Even those who have known her a long time. They still don’t seem to grasp it. I feel like saying ‘the same reason as always’. Sometimes they follow up with: ‘does she have an infection?’

SHE ALWAYS HAS AN INFECTION. She is going to be hospitalised frequently throughout a year. Some years more so than others. It isn’t like when a non-CF family member is in hospital out of the blue, that is a cause to ask why. If the reason for hospitalisation changes, I’ll let you know.

  1. The weight thing.

Yes, my mother is eating the world’s greasiest double cheese-burger right now and yes, her doctor is fine with it. Unlike you or I she needs the calories. She is encouraged to keep her weight steady and on the higher side. When she gets an infection the weight disappears in the blink of an eye. It is kind of insane. So, the whole ‘salads only’ thing won’t help her.

  1. How the hospital works differently for long-term patients.

No, visiting hours don’t apply to us. No, she only eats the hospital food if there is a mega famine that week and somehow only the hospital have a supply of food. No, you shouldn’t bring flowers, they are prohibited because the harbour a deadly bacteria that isn’t good for CF patients. Yes, of course she uses her phone while in hospital, this isn’t the 90s.

  1. The non-pulmonary aspects of the disease.

Her lungs are just one part of the complex disease. There are many others. Her pancreas isn’t the best and has a tendency to go a bit nuts sometimes and her intestines decide to function properly depending on the day. The disease is much more multifaceted than you think.

  1. The lack of knowledge most people have about the condition.

No, it is not like asthma. No, it isn’t like lung cancer. No, she never smoked. No, there is no cure. No, an antibiotic won’t get rid of her cough. No, it isn’t contagious. Yes, I am sure we have explored all treatment options. No, her doctors aren’t over-looking anything. No, we haven’t tried your weird, witch-doctor herbal remedy that worked for your mother’s brother’s cousin’s friend’s son, thanks though.

-Christina.

    
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Recent TV3 Ireland AM interview: http://www.tv3.ie/3player/show/184/97433/1/Ireland-AM