The COVID-19 Gift….Time To Stop, Time To Ponder!

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 that crowd our day?

Do we really take time to reflect and ponder and listen to our own thoughts?

Do we quieten our minds enough to work out what we really feel, what we really believe?

Time To Ponder

I’m pondering today, 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.

I need time to take in what the Coronavirus Pandemic means for me, my family, my friends, my country and the World.

I need time to rest physically, emotionally and spiritually.

I had a bone marrow biopsy recently as part of an Oncology review. My bone marrow continues to show signs of a malignant pattern on MRI. It’s likely my bone disease is causing this and not a blood cancer but my Specialist team felt it was time for another Oncology review, just to be safe.

I had one in 2016 and it was decided then the bone disease did have it’s own malignant pattern. Not cancer at that stage, so no treatment. Nothing to do other than palliative care as the disease continues to progress.

This latest bone marrow biopsy has confirmed the diagnosis. A malignant pattern of it’s own kind. Not cancer. The MRI suggests myleofibrosis and honestly, if it was I would have treatment options. Instead, I am left with no solutions to manage or treat my diseae.

Even my Oncologist 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.

It reminds me a little of the threat  COVID-19 poses. It has a mind of its own with no cure as yet and just keeps progressing.

I’ve just spent over 12 months dealing with my disease progression and complications of severe lumbar spinal stenosis and failed surgeries. The journey clearly isn’t over but at the moment I’m exhausted and I need peace, perfect peace.

I’m regularly persuading my husband not to call an ambulance as I have constant episodes writhing in pain. New fractures in my feet scream at me and my lower back refuses to allow me to sit, stand or lie down without excruciating throbbing, burning, aching pain. In places along my legs and feet I have complete numbness. I can’t work out which kind of pain is worse.

I’ve just been diagnosed with spinal fractures at l4/l5 and l5/S1, so it’s little wonder I can’t move.

The pain has been at this intensity for 10 months. Pain killers may as well be lollies as they often cease to work. I feel like I am having surgery performed without anaesthetic…..it’s the only way I can describe the level of pain.

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?

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 you just when you had finally managed to make it to the bathroom or were about to enjoy a meal.

Texts, phone calls, 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 through the hospital on your bed, to Radiology for scans and x-rays.

Cleaners coming into your room to dust and vacuum, just when you thought you were finally about to get some rest.

Noise, noise, noise!

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I Need Quietness And Solitude…Now!!

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. It’s all on hold for at least 3 months and possibly longer, partly because of the Coronavirus and partly because my Surgeon is concerned the integrity of my bones may mean the surgery could cause irreversible damage.

So as I ponder my future, and the current global crisis, I’ve been looking at inspirational quotes for my online support group, Medical Musings With Friends.

The more of them I read the more I feel a growing sense of emptiness. So many lack substance and that’s 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”.

Today is not that kind of day. 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.

2 Corinthians 4 v 17 – 18

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Ahhh….as I read those 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.

The noise begins to disappear. My mind is beginning to function again. My thoughts are starting to form with some clarity. 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 quiet soul helps to manage it.

Time out to ponder is definitely good for the mind, body and soul. It’s good medicine.

It is important for me to be reminded that God has a plan for my life. A plan full of hope and a future.

When true inspiration is needed I know where to go! I know where to find perfect peace and solitude.

I’m so grateful my faith in God carries me through the dark tunnel of chronic illness and pain and global uncertainty.

Take Time To Connect With Real Life

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 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.

Oh the bliss. A day of pondering is an important tool in anyone’s life but especially when living with a chronic illness and especially as we grapple to make sense of this current global pandemic.

We need time to think, to regroup, to even feel the pain rather than trying to ignore it and push through. We need to listen to our bodies.

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.

Happy pondering!

Sam xx

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.

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 Salt and Light Linkup Group

If you would like to read a little more about my journey, here’s the link to My Story

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WEGO Health Award Nominee 2019- Best in Show Blog

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WEGO Health Award 2018 Nominee

 

2 thoughts on “The COVID-19 Gift….Time To Stop, Time To Ponder!

  1. Oh Sam, I’m so sorry for the ridiculous amount of pain you’re in and your recent bone marrow biopsy results  ♥ I can see the quandary, for lack of a better word, with the no-cancer diagnosis and problems faced with a rare disease with that kind out outlook and with limited options or support. There’s part of me that feels the hospital is the best place at times, that seems obvious, but sometimes home is better, I agree.

    It’s trying to trust your instincts for what you need right now and what your brain and body are telling you is the most important. Quietness and solitude are underrated. I really, truly hope you can find and spend time with that silent, to get some inner peace, to nourish and nurture from the inside out, to connect with your faith and sooth your soul.

    I feel so useless. Please take good care, Sam. Sending lots of hugs (super gentle ones) and oodles of love.
    Caz xxxx

    Like

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