Tag Archive | mental health

The realisation of mortality

Hi everyone, I’m sorry it has been a while….but it’s been a bit rough around here lately.

Cam during nebuliser treatment

Cam during nebulizer treatment

Cameron’s health hasn’t been the greatest for a while now. A few weeks after our last annual review, he got very ill. I hadn’t seen him that sick since he was diagnosed! We found out his bronchoscopy had results showing he was growing Staphylococcus (staph), which can cause major havoc on CF lungs.
We started nebulizer antibiotics, which showed good results for a while.

He is now coming into his fourth week of nebulizers, but in the last few days, he has gone downhill again. He is coughing a lot, breathless, has no energy, grumpy as hell and off his food. This has caused us some major concern!
We are just waiting for two more new antibiotics to arrive from the specialists in Perth. One is an oral antibiotic, designed specifically to treat staph infections. The other is a very strong nebulizer antibiotic (again, designed specifically for staph), which when it arrives, we have to arrange with our local hospital to administer the first dose so that he can be medically monitored for any side-effects. Providing it all goes well in the ER with first dose, we will be continuing them at home. So for the next month, he will be on four different antibiotics!!
I am glad that we have narrowly dodged a hospital admission at this stage, though I have this niggling worry that it will inevitable. Please wish us luck and we welcome all healthy vibes that are sent our way!

I will keep you updated with his progress when I can.

We live with CF every day. We know the risks involved, what might or even what WILL happen during the journey of this condition. But knowing it, and being AWARE of it are two very different things.
I constantly talk about CF. I raise awareness as much as I can. I try to stay up to date with medical updates. But when your little one is very sick because of the condition, you remember, it’s not just about being knowledgable. The “la-la land” bubble bursts and all these things you “know” about are an “in-your-face” reality. This is my son’s life. This is his permanent battle. THIS SUCKS!

While we are dealing with this, the dirty “C” word has infiltrated itself into the family. No…not that dirty “C” word…..the other one….cancer. I don’t want to breach the privacy of the family member who has been battling this for a while by revealing too much on my blog (and I hope they don’t mind too much that I have written about it right now) Our head spaces have been zooming all over. We have also had to come to terms with the fall out of this nasty, evil condition as well.

My own health hasn’t been the best lately either. I am currently trying to quit smoking. I have to do this, I need to do this….I WILL do this. But like previous attempts at quitting, my lungs go spastic on me. I always get chest infections when I attempt to quit. But a recent incident brought home my own mortality.
For a week, I was tight chested, wheezing slightly….the symptoms I usually get in the days after my last cigarettes. But three nights in a row, I couldn’t lie on my right hand side (left hand side or stomach was fine, as was upright…I could breathe). On my right side, I would instantly stop being able to breathe and would go into a coughing fit that would take half an hour to recover from. I tried to hold out until Monday, when I could see my doctor, but on Sunday morning, I woke up on my right hand side. It took forever to be able to catch a breath. I was legitimately worried about dying right then and there….so I took off to the emergency room.

They gotta go. I KNOW I have to stop!

They gotta go. I KNOW I have to stop!

I was treated very thoroughly…more so than I ever have before. I had three nebulizers to relax my airways, and two steroid tablets. They did a chest x-ray, which came back clear and gave a sputum sample. They even inserted a canula into my hand, gave me a fluid drip and took blood to test everything from white blood cell counts, to salt and insulin levels. It didn’t feel like an asthma attack, but it didn’t feel like a usual chest infection either. While they treated and got rid of most of the symptoms, most of the tests came back clear, so we don’t know exactly what caused the respiratory distress yet. I have to call for the last few results tomorrow…so hopefully I get some answers.

While I am feeling much better, the experience scared me greatly. With Cameron’s current health scare, plus the cancer in the family, all I could think of was “I am not allowed to die! I can’t do that to the family…not now! I am too young! My family is too young for me to go!” I came to realise, like most mothers, while I am very good at looking after my family, I also need to look after myself! I am getting back on track with my diet, the cigarettes are in the past, and I need to look after myself better mentally and spiritually as well.

I have been under a lot of emotional stress lately. I am run down. My husband and I have started scaling back our workload a little to take the strain off. This is already an immense relief. I need to make more time for my family.

I need to make more time for ME!

Bella 🙂

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Outlets (with a guest’s poem)

When dealing with grief or highly stressful situations, it is important to find a healthy outlet for your emotions.

People quite often ask me how I cope with everything. They think I am joking when I say “Copious amounts of coffee and wine gets me through the day!”
As they laugh at my joke, little do they know that there is an element of truth (in moderation of course…well…maybe not with coffee!)

Writing is my biggest tool for processing my thoughts and emotions, hence why you sometimes see some mindless dribble on my blog. I find my blog satisfying as I get to pour out everything my family is going through, and I can easily look back and see what we have gone through and how far we have come (or not) in the process. But the biggest thing about my blog is the understanding that my words may help, even just one person with their own crisis, then my blog has done its job (and I really do hope it is helping some of you, even if it just for awareness!)

I know a lot of people who have used writing to help them process, even with their grief, and this is where I would like to introduce my guest blogger, Kathleen Mullaly.
Kathleen is not only one of my clients (a brilliant one who keeps me well topped up on great coffee and conversation) but she is also a friend. Her story is one of heartbreak. When she was quite young (maybe around seven years old?), she was in a devastating car accident that took the lives of both her parents.

We all know that teen years can be difficult anyway, but the loss of both parents must have made it even harder for Kathleen, so she turned to poetry to release those emotions.

She recently gave me a file of her poetry from those years to have a read, and I stumbled across an ode to her father, with whom she was quite close. It touched me and she very generously gave me permission to publish it. (I have chosen not to publish the family photo that accompanied it, but it was very cute!)

I haven’t lost my father, but if you have, I hope Kathleen’s words touch you too!
Bella 🙂

father and daughter at sunset

 

 

“Once Proud”

You were once proud of me,

I was your little girl.

I looked up to you – Dad.

Your happy face, I’ll treasure.

Our time together was short – too short,

But every moment was special.

I was your little girl.

You were so proud of me.

Would you be now I’ve all grown up?
It breaks my heart thinking of you.

I’ll never forget you.
We had a special bond that I’ll carry.

You have taken half of me with you,

and left half of yourself here with me.

I love you so much and miss you

more than word could ever say

Love you always Dad.

By Kathleen Mullaly

Camaraderie

Being as CF parents can be likened to the military. I know that sounds weird, but let me explain…

If there is a call to arms in the military, men and women everywhere drop what they are doing and rush to help. There is a certain type of friendship and understanding between them. They understand what another is feeling, can relate to their experiences, they trust each other totally. This is called “camaraderie”.

Being a parent to cystic fibrosis is no different. If someone calls out that they are having a bad day, or need help/advice, there are a mass of people who will drop what they are doing to offer their support. Whether it’s a virtual hug online, or a pat on the shoulder saying “There, there.” Everyone nods along when you relate your experiences. They know. They have been there. They have lived it.

I have met many wonderful people since my son’s diagnosis. There are some that I have physically met, and others who have only shared our experiences online, but there is a connection with these people that I struggle to have with people I have known my whole life.

These people are fellow war fighters.

From our experiences, no matter what our background is. We have a common ground that allows us to bond in a way that others cannot. I find myself being able to open up and talk to these people in ways never before. Instantly, I felt like I had known these people my whole life. They know my most inner self like their own best friend. Like being in the military, it can only take first-hand experience to be able to truly understand.

I am thankful for my comrades. Who knows where I would be today with out them. I hope they know exactly how special they are.

Bella 🙂