Taking Time To Reflect

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, and what our innermost thoughts are?

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 few years 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 that it was likely that my bone disease was causing this and not a blood cancer. Although I have since been diagnosed with low grade Lymphoma and we are treading it with a “watch and wait” approach.

I also had a biopsy in 2016, and it was agreed that the bone disease did have it’s own malignant pattern. There is 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 revealed an IGM paraprotein, which is indicative of blood cancer.

Needing Space

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 the hospital, but I’ve had enough of spending a good part of the past nine 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 are 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 was concerned that the integrity of my bones may mean the surgery could cause irreversible damage, possibly death, due to the high risk of infection. They now feel it’s so unstable that we need to consider surgery despite the risks. I’m taking my time to consider it, but the blood cancer diagnosis, and it looks like I also have advanced liver disease (likely autoimmune related), are causing me to review all health priorities.

It honestly feels 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.

My Book

My book “My Medical Musings”, is published by Imaginewe Publishers and available now to purchase as a paperback or e-book.

Here are the links to online retailers if you would like to purchase the book:

Imaginewe Publishers

Amazon

Koorong

Booktopia

Book Depository

Angus and Robertson

Barnes and Noble

Blackwells

My Podcast

If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam

I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of the Chronic Illness Bloggers Network the Grace Girls Facebook Group and the Showered In Grace Group

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