Inspirational Quotes surround us in today’s world of Facebook, Twitter, Pinterest and Instagram.
Throw away lines are designed to both challenge and motivate us.
Do they, or are we overwhelmed by the many thoughts, sayings, likes and shares crowding our day?
Do we really take time to reflect and ponder? Do we stop and listen to our own thoughts?
Do we quieten our minds enough to work out what we really feel, what we need, what are our innermost thoughts?
Needing Space
I’m feeling the need for space, partly because I’m battling severe pain and partly because I need quietness to listen to my own heart, my own thoughts and to just be.
So much has happened over the past 10 years in regards to my health and consequential major life changes, I need some quality time to take stock.
I need time to rest physically, emotionally and spiritually.
I was reflecting today on a bone marrow biopsy I had a whole ago, as part of an Oncology review. My bone marrow continues to show signs of a malignant pattern on MRI. It was decided at the time it was likely my bone disease was causing this and not a blood cancer.
I also had a biopsy in 2016 and it was agreed then the bone disease did have it’s own malignant pattern. Not cancer, so no treatment. Nothing to do other than palliative care as the disease continues to progress.
The MRI at the time suggested myleofibrosis. Honestly if it was I would have treatment options which would be a relief. Instead, I was left again with no solutions to manage or treat my disease.
Even my Oncologist at the time apologised when he gave me the news of my bone marrow biopsy results. He said normally he loves telling patients they don’t have cancer, but in my case the alternative of a progressive rare disease, with a mind of it’s own, is the worst case scenario.
However 6 years on and my blood tests have just revealed an IGM paraprotein, which is indicative of a blood cancer. I’m now in the throws of more tests and a 10 day wait to speak to my Hematologist about the results of these next round of results.
I’ve just spent over 12 months dealing with the extremes of my disease progression, including complications of severe lumbar spinal stenosis, fractures, failed surgeries, long hospitalisations and the inability to sit upright, stand or walk.
The journey clearly isn’t over, and if anything it’s just getting more and more complicated, but at the moment my first concern is I’m exhausted and I need peace, perfect peace.
So often my husband wants to call an ambulance on really bad days when my body is screaming and my exhaustion is beyond anything I’ve ever experienced.
Some days I probably should go to hospital, but I’ve had enough of spending a good part of the past 9 years there.
I Just Need To Stay Home!
So why do I really want to avoid going to hospital?
Simple….Noise!!!!
Hospitals are full of noise. Machines beeping, Nurses hustling and bustling along corridors, or prodding you awake at 1am to take your blood pressure.
Specialists visiting just when I finally manage to make it to the bathroom, or am about to enjoy a meal.
Texts, phone calls, people chatting, TV’s streaming different shows from different rooms. Nurse buzzers going off left, right and centre.
Blood tests being taken when least expected. Catering staff taking orders and delivering food.
Being wheeled numerous times through the hospital on my bed to Radiology for scans and x-rays, usually for confirmation of what we already know and no new treatment plan.
Cleaners coming into my room to dust and vacuum, just when I thought I was finally about to get some rest.
Noise, noise, noise!
I Need Peace, Perfect Peace
Quietness and solitude is what’s required to regroup, recharge and renew my physical and mental strength to deal with what’s coming next.
It’s clear my spine is now completely unstable and in an ideal world, I need fusion surgery and bone grafting. It’s was all on hold because my Surgical team were concerned the integrity of my bones may mean the surgery could cause irreversible damage, possibly death due to high risk of infection. They now feel it’s so unstable we need to consider surgery, despite the risks. I’ve got four months to consider it but that was before the looming blood cancer diagnosis revealed itself.
It honestly feels all too complicated at the moment and I just need time out.
So as I ponder my future, I’ve been looking at inspirational quotes for my online support group, Medical Musings With Friends.
The more quotes I read the more I feel a growing sense of emptiness.
So many lack substance, which is ok for a light-hearted pick me up kind of day, when a throwaway line will make you smile and say “yeah, I like that”.
Life is not like that at the moment. Today I need more. Today I need to go where I know I will find real strength. Where my faith will be confirmed, where my soul will be comforted.
I have many favourite verses in the Bible that keep me going through the good days, the bad days and the in between days.
As I read these words and many like them I begin to relax. There is a much bigger picture for my life, for all our lives, than our current circumstances.
Focusing on something meaningful causes the noise of life, and unwanted thoughts, to dim and eventually disappear.
I find my mind begins to function again. My body may still be weak and broken but my soul is being renewed.
As my soul is revitalised, my mind relaxes and my pain begins to creep slowly into the background. It’s still there, but it’s not consuming me completely, as a quieter soul soothes it.
Time to reflect is definitely good for the mind, body and soul. It’s good medicine. It’s healing.
Step Away From Your Device
Stepping away from the noise of social media, reading a book, listening to music or just sitting quietly, can feel like heaven.
Turning off Netflix and listening to the silence filling the room, can be so relaxing. Suddenly the birds outside can be heard tweeting, rather than Twitter chirping at you with a notification on your phone.
The view out of the window is a beautiful real-time moving picture, rather than the Photoshop version on Instagram.
The book or magazine on your bedside table beckons you to pick it up. No blue screen, no flashing lights, no pop ups tempting you to check a message or FB comment. Just the smell of paper and no demands….bliss!
Taking time to reflect is an important tool in anyone’s life, but especially when living with a chronic illness. Especially when new challenges and difficult decisions are ahead.
We all need time to think, to regroup, to even feel our pain, physical or emotional, rather than trying to ignore it and push through. We need to listen to our bodies and our thoughts.
We need to care for our minds and our souls. Let them be quiet, even for half an hour, longer if possible. Don’t be afraid of silence.
Peace, perfect peace! Why wouldn’t any of us choose it and take time to capture it.
Sam xx
Medical Musings with Friends
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.
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My Medical Musings 
We have a saying in our family which goes like this:
70% of Americans die in hospitals.
Moral to the story?
Stay the heck away from hospitals.
We often do not say heck. But you get the idea.
People often do not understand that being chronically ill means we get used to all manner of nonsense. But hospitals will never be something I will accpet.
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