Sometimes we need to take some time out – WHAT DOES THAT EVEN MEAN?
It has taken me almost 12 months to finally take some time out.. really take some time out. When I feel like having a reflection or needing to evaluate situations, i often find writing is my way to let it all out. In doing so, I thought this reflection could be written as a book, but I’ve already written one and with number two on the way (Book that is) I wanted to try and keep this simple.
I tend to always have a lot of projects on the go, almost like its my fuel – to keep me going. It wasn’t until recently that i was able to acknowledge why I like to keep busy.
A lot of people do, so its normal..but for me, it was a reason to keep going.
Believe it or not, I often shy away from the reality of the “truth” of having CF – the truth for me being that I along with many other CF’s get to a point were its like we hit a wall where our lung function is all of a sudden at a “new low” or the weight we need to gain just doesn’t seem to be stabilising, the simple things like walking around the shopping centre yet having to stop to “catch a breathe” for a minute is becoming a reality, my reality. It’s no more reading about someone else battle, it is my battle with having CF.
Living life to the fullest – what is the fullest? I have read many different things, especially over the past few months, that what this means to you in comparison to me is highly likely to be two very different explanations.
‘Living life to the fullest’ for some could be simply getting out of bed on some days and for others, graduating from university (and yes just because you have CF it doesn’t mean that you can not be successful and have a career, we all have our battles, CF is just one of many) or jumping 14,000 feet out of an aeroplane over Mount Everest.
We are all often faced with hiccups and can be discouraged from living life to the fullest and I know from experience getting back on the horse can be very difficult.
January of this year, was the first time in my life I was left helpless and had no control over what my body was telling me, after collapsing and being taken by ambulance to hospital,I had no answers and no real symptoms of why this was happening. I was so caught up in living day to day – being a Mum that all the little signs seemed irrelevant, or as I’m sure any one of you who are a parent can relate, that you will always put your “issues” last, so for me when I finally blacked out and was carried inside by my husband to lay me into bed as I was shaking and my eyes were rolling in the back of my head – lets just say it was the beginning of a huge wake up call.
With my 2 year old asleep and my 4 year old hovering, the worry in her face to see me in that state is something i will probably remember for a long time.
It made me remember how as a kid, when we would visit my Dad at dialysis, i would have a an emotional wind blow of sadness, as i remember seeing him attached to the machine, with needles in his arms, blood filled tubing surrounded by other patients in the unit also undergoing the same treatment. This for my Dad is what he needs every few days – if he doesn’t have dyalisis, it is life threatening. I do remember fondly is no matter what his circumstances were and to this day are, he is always smiling, his shiny white teeth – you’d never know that he has been fighting one hell of a battle, he always has his infectious smile.
So when I saw my daughter looking at me, making sure I was okay – the emotions that brought to me, took me back to one of many childhood memories of seeing my Dad sick.. but to see him smiling was almost a reassurance that its okay, he’s okay and it was almost normal.
I was taken to hospital by ambulance, which i didn’t agree with being so stubborn, but this time i wasn’t in a position to not say anything. My Mum came over and i just remember her and my husband talking and making the decision to call the ambulance, my eyes kept rolling into the back of my head as i kept blacking out while i layed there, i remember my body having short spasms, not having control over the fact my legs where shaking left me feeling extremely frightened.
Thankfully the ambulance arrived and my son was still sleeping, my daughter was happy playing so what was happening with me wasn’t a red flag for her.
I had to be wheeled out to the ambulance, not to be dramatic, but that was horrible – not having the energy to even walk, not being able to open my eyes with out them rolling back wards, the chest pain..it was all symptoms i had never experienced.
Once in the ambulance, i remember my husband and children were at the end of the ambulance doors, both kids not wanting to come in and hug me goodbye – the worry in their faces, the guilt i felt and the fear i had of not knowing what was happening, it was gut wrenching.
I could still see my husband standing there with our two babies, one on each hip as he held them – i smiled at them as i knew my Dad would to me, but once those doors shut I broke down.
The ambulance officer was wonderful – he held my hand and gave me the “pep” talk. Telling me he could see how much of a wonderful mum i was and that now i needed to let him take over as I was not well – he reassured me many times they were with my husband, they were happy and that i needed to let them take care of me to get me back home to them.
That was the first time in my life, i remember every detail – the emotions i felt and the fear that came over me. So many times i’d take advantage of my ‘good’ health.. well what i believe to be good health (Treatment daily, Exercise, High Fat Diet..you know the drill)
Once I got to the hospital, the fear became stronger as i all of a sudden lost all feelings from my hips down.. I wasn’t able to wiggle my hips to get to the hospital bed, i was literally carried by the staff, no matter how much i felt like i was almost telling my legs to move, they wouldn’t.
My Mum was with me as I didn’t want anyone to have the kids except my husband, she was already emotional because our family cat was put down that morning, so this added to her drama..my poor Mum.. She looked exhausted, i was in a hallway in emergency having numerous doctors in and out trying to assess me to see what was wrong but no-one came up with any pathways to go on for a diagnosis.
I basically told Mum to go home, I knew I was in the best place i needed to be and that if it got worse, she would come straight back. The tests eventuated into seeing a neurologist as they were concerned the issue was starting to stem from my nervous system – now i did have my phone and when they were waiting for the neurologist to come to me, lets just say do not google the outcomes of what a neurologist would say.
I was at an all time low, the symptoms were not good, i was scared.
My lung function was also done to see how that was sitting, this result came back at an all time low, it had basically halved what it normally is – the only outcome i was overhearing from the staff was that my body was trying to shut down.
So to cut this long story short, after 12 hours or more of being hospitalised, this seemed to be the way of the universe trying to finally make me rest and stop everything. The rest seemed to be what i needed. The neurologist hadn’t been at this point and the outcome now was to have me transferred to the Royal Adelaide hospital so I could commence intravenous treatment – i wasn’t liking my chances at 12am on a Sunday morning of having intravenous treatment start.
I remember almost feeling like i was talking to my body telling it to move, and just like that I had started to get movement back in my lower body..I think it took an hour or so after being able to wiggle my toes, I forced myself to stand up and walk around the bed holding on, to have the nurse come in and see me doing this – led to the neurologist arriving and clearing me from her end.. Numerous doctors put it down to pure exhaustion and my body just gave in finally.. I look back and think “finally” it “gave in” well thank god i am still able to wake up every morning.
Dramatic maybe, but for me it was the first and hopefully the last time something like this will ever happen.
It put things into perspective to me. Listening to your body is so important, too often we ignore the title things and they go on the back burner, but the back burner can only hold so much until it over heats, which is exactly what happened..
It scared me so much that since, i have taken a real step back from everything.
In the past 12 months had to resign working my job, which i loved as I had worked hard and been given many opportunities, but unfortunately the pressure of work and CF was not doing my health well – add being a Mum. ( a miracle which I am grateful everyday for)
This was a real smack in the face for me – i had to turn the negatives into positives, i was so used to being in the work force, going from full time, to part time to better manage my health and then to re-enter the workforce as a Mum, managing this as well as CF and trying to be successful with what i was doing. It was very hard and not possible. The decision wasn’t made light heartedly and it has only been until recently i have come to accept that you can’t do everything.
Ive learnt that being on social media opens you to a world of criticism – and when criticism occurs, you need to be mentally prepared to either “deal with it” or strong enough to look past it, something that i felt at this point in my life i was weak at.
I found comments that had previously been made as to why would i become a mother knowing i may die? And in response to that, anyone could loose their life for any reason such as a car accident or another illness and it was this that made me remember who I am and the attitude i had forgotten was resurfaced, I refuse to let CF define who I am and give me limitations, because there is no limitations and anything is possible.
In stopping work i had to write a list of reasons as to why, this would give me something to focus on and remember. To look after my health was the number one focus. To actually have the time to complete the treatment i need to do. The smallest things like being consistent with nebulisers morning and night, being able to exercise and have the extra rest may seem like small yet they are time consuming and something i wasn’t doing. I also learnt the mental health of myself was probably best desribed like a mouse running on a wheel, fast and unable to stop without toppling over.
Having mental health issues, unfortunately is so common yet so unspoken off. I for one have been through many ups and downs and knowing that the dark cloud that hovered me was okay, allowed me to not shy away this time. I was able to acknowledge this and work closely with my doctors to get on top of things, to strip back a few issues to work out the root cause, then work through them. Gosh if your not happy with yourself and your continuously just ignoring the issues, they will just break you eventually.
But for me, I always smile, get on with things and when your hiding from everyone else the anxiety and depression your going through its very easy to just get on with things, but its when the highs stop and your on a low that your worries and everything attached comes to front you again. This past year has been a rollercoaster of many things, but figuring out that I am okay and realising what triggers me, has allowed me to concrete my ground and build upwards and onwards.
Focusing on my family, my ever so supportive husband, forever standing by my side, lifting me up and reminding me that I make the impossible become possible. Enjoying my two precious (not so little) babies is a journey that i am so grateful for. Learning about the world through their eyes and the lessons taught between us, the laughter and of course the tantrums, I love it all. And being healthy. Genuinely being able to spend the morning doing my treatment, going for a walk with the kids to the park, laughing with them, playing on the slides, taking them to the swimming centre, one of the many “physical activities” I feel grateful to be able to do with them. I have realised that taking a step back from the world and concentrating on whats important, is actually okay to do.
There will always be someone to carry the baton so you can have the rest. So as I have slowly been refuelling, the reflection has allowed me to work out my priorities, concentrate on those and work out the way to balance everything so that it works. I can’t do everything at once, but I will do everything at least once.
Becoming an ambassador for the Cure4CF Foundation has definitely allowed me to keep my passion alive for raising awareness for Cystic Fibrosis.
I am so excited to see other people with CF step up and start to raise awareness through their stories and to see their passion in raising funds. We are all in it together, to find a cure for CF.
Without harping on to much, I see the foundation as the light at the end of a tunnel, personally, they give me so much hope. I have so much faith in what they are doing and believe what they are working towards is actually realistic and not that far away.
I want to share with everyone what they are doing and open the eyes to not just the CF community but to the world on what is potentially around the corner.
So my part in raising awareness of what Cystic Fibrosis is and educating people on the research team and updating everyone on their progress, i believe is so beneficial as the more money raised for them, means the closer they are to actually getting this cure.
I am months away from turning 30 and as i look back at my life and where i am today, i am amazed. From finishing school, travelling, working full time, having a crack at numerous careers, to marrying my true love and being blessed with two beautiful children, safe to say i am living my life to the fullest.
I am confident this next 10 years is full of exciting things to come. Trust me when i say exciting.
And to let you in on a little secret…
The excitement to know that their is high chance of a cure being found by my 40th birthday, almost makes me want to wee slightly in my pants !
So as I end my novel of a reflection, I hope you’ve enjoyed the read, take a few lessons from me.
1. Listen to your body – REST, Take the time out – otherwise it will tell you one way or another
2. Family is first – Forever, for always – through good and bad, family is always first
3. Live for the now & plan for the future – so love the moment you are in and plan for the exciting things to come..all in time it will happen
4. Its okay to fail – this is all part of experiencing and learning to do better.
5. Be present – get of your phone, turn of your emails, be present in the moment at least for a part of your everyday – you will never get that moment back
6. Respect, Love and Smile