You’re probably wondering what on earth the title to this blog post means.
How can you be “Blissfully Broken”?
No I haven’t gone mad…..ok, maybe just a little!
I’m musing about my life as it stands today.
When chronic illness is complex it’s easy to feel overwhelmed. We can be diagnosed with so many adjunct conditions, our medical history reads like a resume of achievements.
Believe me, it is no achievement to have chronic disease. The achievement lies in how we handle our chronic illness and the list of diagnoses, all designed to keep us in a head spin…..if we let them.
Every now and again I like to take stock. My pain is all consuming and it’s important for me to remind myself of the source of my pain.
It keeps me living in the land of reality if I can view my situation from a “clinical” perspective. If I name the reason for my pain, it triggers a positive emotional response in me. It tells me the pain I’m experiencing is what I should expect to feel and therefore the changes to my life are necessary.
If something is necessary then I can create a tangible strategy to deal with it.
So as I mused about the health issues consuming much of my day, four B’s immediately presented their case in my mind.
The First B – Bone Disease
My bone disease is front and centre. It encompasses my body with multiple fractures throughout (femur, feet, spine, hands) along with severe stenosis in my lumbar and cervical spine. At the moment I can’t weight bear for longer than 5 mins at a time for the first 5 hours of every day. Even during those 5 mins I must use crutches at the very least.
After 5 hours my pain reduces to around 7/10 and allows me to stand and hobble (still with crutches). As opposed to the previous 5 hours it feels like bliss.
So that’s my first B but my second B is also consuming in its own way.
The Second B – Baldness
In a previous blog I wrote about my hair loss and my adventures with “Wigs, hats, scarves or au naturale”.
Significant hair loss (Baldness) is no picnic for anyone. Add in my first B (Breaks) and it becomes a little more challenging. I simply don’t have the energy or ability to deal with fussing about with my hair. To be able to attempt any task, (even brushing teeth), everything needs to be paced and scheduled around medication, to provide optimum pain relief.
Even this strategy isn’t really working. So I need to accept throwing on a pre-tied bandana or a hair loss cap with a scarf tied around it, is the best I can achieve on most days.
Sounds ok doesn’t it, but I am the girl who has washed and styled her hair everyday since I was 11. I love doing my hair. It is a significant loss and a significant impact to my daily routine.
Then there’s the third B…. My Bag!
Living with a stoma bag, (in my case a permanent colostomy), is not something easily scheduled. As my bone disease progresses this adds a further layer to my daily challenges. I’ve had to come up with so many different alternatives to deal with this situation. None of them are what I’d call my preferred options, but this is life with chronic illness.
It takes so much, it’s not a normal life, it creates challenges, it demands solutions.
I’ve come to learn a “progressive” disease means rewinding to better days is not possible. Each progression level brings a permanent change to life’s flow. It requires a re-think to how I pace, how I deal with caring for my hygiene and grooming needs. It means I need to accept there are things I can no longer do and will never be able to do again. It means further changes to Peter’s role as my carer. It means grieving again for a while.
Treating a progressive disease as one causing flares and then remission, doesn’t help the situation. It’s simply not like that. I don’t know how long I’ll remain in my current stage before further progression occurs but over the past 12 months the rate has increased. I have to confess it’s a little disconcerting.
Ignoring this reality is not helpful though.
Confronting it head on and dealing with the next level as a permanent state, can allow a sense of calm to be achieved and dare I say it….a state of blissfulness!
The Final B…..Blissfulness
I particularly like the Oxford Dictionary meaning of the word Blissfulness:
happy feeling, showing or giving pleasure; satisfied with something or not worried about it:”Oxford Dictionary
“Satisfied with something or not worried about it”.
That’s it! That’s how I feel. Yes it’s disconcerting to know my body is failing me and to have no idea how much it will test me in the future. It doesn’t mean I can’t be happy though.
It doesn’t mean I can’t be satisfied with my lot and not worried about it. I can actually be “Blissfully Broken”
My morning pain is beyond description. I remember when my femur snapped in two and the paramedics, and later the nurses, had to move me from a stretcher to a bed. The pain was surreal. They could see the 2 ends of the broken femur move apart through my skin and they confessed to feeling physically sick. I had a pillow over my face to stifle the blood curdling screams as the snapped bone moved freely within my leg.
I never thought I’d experience this level of pain again….until now.
My lumbar spine is like this every single morning for the first 5 hours of the day. There is so much going on at l4/l5 in particular. Foraminal stenosis, collapsed Ligamentum flavum, bone spurs, spondylothesis, facet joint fractures and spinal canal compression. It screams at me and I scream back. Just trying to sit on a chair is the equivalent of the femur bone separating.
Our neighbours thankfully know of my condition as Peter has needed to explain to them why they can hear me scream at times. It’s embarrassing but I just can’t help it. I deep breathe, I have tried to wait until pain meds kick in, but for some reason they don’t seem to for ages and lying in bed for too long makes it worse.
As painful as it is, moving is the right thing to try and do.
It is what it is and I can be miserable or choose an alternative.
I choose an alternative. I choose to be “Blissfully Broken”
I love the moments when I’m finally able to sit comfortably (and perfectly still) with a hot cup of tea or coffee and watch something on TV. Feeling relaxed takes on a whole new meaning when your body has been racked with pain 30 mins earlier.
I love being able to suddenly move, with my crutches, at some point during the day, when the morning episodes of pain felt like they would never reduce.
I love the feeling of finally getting dressed, bag changed, bandana in place and a bit of makeup on to brighten my pale face. It may take me until 1pm but it’s a massive daily achievement. The reflection in the mirror reveals a determined woman who is not done with just yet. A woman who has every reason to stay in bed and not try to move, but chooses to get up and fight on while she has any semblance of fight left in her.
I love the evenings when my pain is at its lowest level and I can feel the days stress levels, from pushing through, starting to drop away. I can write, enjoy a favourite show, travel the world through the lens of others, converse more easily online with family and friends. I can snooze and dream pleasant dreams.
I could go on but you get the picture. Chronic progressive diseases are hard work so why would we choose to make them harder if there is an alternative.
Holding on to the thought of blissful moments, no matter how short they may be, makes all the difference to my days. I hold on to the thought of those moments during the daily episodes of hellish pain.
Moving and using our bodies when and if we can is so important. Celebrating our achievements is vital to our sense of well being. Even if the achievement may seem as small as brushing your teeth.
I know the effort required to do it and achieving it is just awesome.
This isn’t meant to be a sad reflection and I truly hope it doesn’t come across that way.
I want to encourage my readers living with painful progressive diseases, to choose to be “blissfully broken”…..whatever blissfulness looks like for you.
It changes for me as my disease moves from one stage to another. I guess it always will as each new phase brings new adjustments to daily living.
I’m ok with that. As the Oxford Dictionary gives meaning to blissfulness as being “satisfied and not worried about something”, I can honestly say I might be broken but…..
I’m blissfully broken!
If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum,Medical Musings with Friends. It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
If you prefer an audible blog post, please check out my Podcast, Medical Musings With Sam
I’m a Contributor at “The Mighty”. You can check out my published articles atMy Author Page
I also write @ Blogs by Christian Women
If you would like to read a little more about my journey, here’s the link toMy Story
Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!