Loving “Moments” of Life

I would have thought that being disabled, and pretty much housebound, life would go slowly. I’d have thought each day would drag and each hour would leave me wondering how to fill my time.

Ha…How Wrong Was I !!

I can’t believe 2018 is nearly over.

What have I done with my year? What makes a chronic illness existence so busy.

As I pondered that question I realised the answer lies in how I spend my moments, not necessarily my days.

I’ve adjusted to my new life by filling it with moments of purpose. In many regards I am working as hard as I was when I was actively employed enjoying a successful career.

My online forum has replaced my old work life. My days are full of beautiful people and amazing conversations, in a virtual sense rather than in the workplace. I have an admin team to care for and 1600 plus forum members to provide a much needed service to.

On top of that I blog, write, manage my health and help my husband care for our home. My health takes up a lot of time with appointments, procedures and surgeries and just overall pacing of all basic physical activities.

Put all that together and hours, days, weeks, months and quite clearly a whole year, just fly by.

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Loving Life

As crazy as this may sound, I’m loving life.

I say crazy because I’m sure many people must think I should be curled up in a ball, rocking back and forth in a corner. I have considered it on really bad days but it’s just not me.

Broken bones due to my crippling bone disease, Rheumatoid Arthritis and associated autoimmune issues, extreme fatigue and a stoma don’t bode well for a “loving life” campaign. But that’s just my flesh and bones. It’s not my soul. It’s not what really matters.

My heart still beats and my brain still works and I am so so grateful for that. Yes, life can be hard and many days out of the 365 per year are not pretty, but moments in those days are.

Moment by Moment

Moments when the pain meds kick in enough to let me write or be active on my forum. Moments when I can do something nice with or for my husband.

They are the moments that are strung together to make the year go fast. They are the moments that complete me. They are the moments that make me love life. They are the moments that cause me to push on and not give up.

This is life. This is my life. I only get one and it needs to matter.

Troubles Are Momentary Too

2 Corinthians 4:17 (NIV)

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.

When living with chronic disease it can so easily feel as if our flares and high pain levels are unrelenting. Believe me I often feel like that. The pain is real, the disability is real.

However, the excruciating pain I suffer comes in waves. The pain is always high but I’ve adjusted to a moderate level of pain where I can function, in my restrictive way.

The excruciating pain lasts for moments. Sometimes too many moments strung together, but moments nonetheless.

If I think about my days in terms of moments, I can focus on the fact I will get moments when moderate pain allows me to write, to laugh, to listen, to participate in life to some degree.

The moments of severe pain and darkness will be outweighed by the lighter moments….every single time.

What About Days When There Are No Light Moments?

Yes, they do happen but they are rare. Even when I’ve been in hospital, post major surgery, there has still been something to make me smile. A caring nurse, seeing my husband walk through the door with a real coffee in hand or a decent cup of tea, these moments stand out to me.

These little moments of relief manage to squeeze their way into the dark days. We just have to look for them and hold onto them. They offer us hope that bigger, brighter moments are just around the corner.

If you really are feeling completely overwhelmed by your disabled and chronic illness life, it’s so important to seek help.

Professional counsellors can help provide coping techniques and skills to assist you live your best life possible.

It’s not about living in denial or being delusion about the reality of the hard moments. By acknowledging those, we can learn to use them to absolutely savour the good moments.

Life then becomes precious, every single day.

I sometimes think I’m more alive now than when I was healthy, living a crazy rat race existence. I just ran from moment to moment and day to day in my old life and much of it is a blur as I look back.

New Year Moments

As a new year approaches I won’t be making any great resolutions or setting any concrete plans. I have some rough idea of events and tasks which require some effort and thought, but timeframes need to be flexible.

I know there will be tough moments followed by good moments and that’s enough for me.

Afterall, life is like that in both sickness and in health. None of us are immune from the highs and the lows.

How we choose to live with them and through them, makes all the difference.

I know what I’m going to choose. I choose to live for moments of happiness, creativity, community, love and moderate pain. I choose to hold on to hope for bright moments to follow tough ones.

Rather than expecting a perfect life filled with halcyon days, I choose to love and cherish the moments of my life where I can engage with some of the activities I enjoy.

What will you choose?

Sam xx

If you’re looking for genuine support, care, understanding & 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 & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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Have Yourself A Merry Little “Chronic” Christmas

As Christmas Day fast approaches I imagine most of us, in the chronic illness community, are musing about what we want to realistically achieve over the holiday period.

For those of us with Chronic Disease it can be an incredibly overwhelming time. Just trying to be happy for others, when your body is screaming at you, is enough to make you want to run and hide.

Even if, like me, you have a super quiet Christmas for two planned, there are still concerns. Will I be able to function on the day? Will I manage to stay out of hospital?

No amount of pacing or planning can ensure my body will do the right thing. I will pace though and my husband and I have removed all expectations. We will go with the flow and it doesn’t matter if it turns out to be a struggling day does it? Does it?

Does It Matter If You Can’t Handle Christmas?

Hmmm…..let’s be honest….it does matter. I’d be kidding myself to say it doesn’t. It matters a lot to me. I want my husband and I to enjoy Christmas dinner at the very least. He sacrifices so much without any complaining so I want him to enjoy turkey with the trimmings.

I want to feel as pain free as possible on the day so I can enjoy opening presents and chatting to family on the phone. I’d like the energy to look forward to phone calls.

I want to have some energy in reserve to really enjoy the Christmas DVD we’ve chosen to watch on Christmas night. I don’t want to be wishing it would be over because I can’t find a comfortable position for my broken bones.

I don’t want to be dealing with a stoma blockage because I’ve eaten something on the “naughty list” in the lead up to Christmas.

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The Things I Miss

Then there’s the things I miss. I miss not being able to travel to see my Dad and his wife for Christmas. They are so close, only a 2 hour drive away, but it’s so far when you have a broken body.

I miss not getting to a Carol Service and Christmas Eve/Day Church Service. I miss not being able to go to large shopping malls and enjoy the Christmas atmosphere.

Even for those of us who don’t suffer mental illness, the lead up to Christmas can be a melancholy time. It’s important to acknowledge all those feelings. They are real, important and very, very normal for the chronic illness sufferer.

Feeling a Little Melancholy Is OK!

If you are feeling a little melancholy…….you are not alone.

I will have a lovely Christmas but it will not necessarily be a season of constant joy. It will have moments of delight, moments of extreme fatigue, moments of excruciating pain and then moments of relaxation and rest.

This is the reality for those of us with chronic illness.

Moments full of comfort and love with my husband will always be the highlight for me.

Click here if you’d like a glimpse into my tentative plans for a Merry Little Chronic Christmas.

My hope and prayer for you all is, whether surrounded by loved ones or home alone, you will have moments of a “Merry Little Christmas Day”, no matter what it looks like.

Happy Christmas to all my readers and thank you so much for following my musings throughout the year.

Lots of love

Sam xx 💗💗

 

If you’re looking for genuine support, care, understanding & 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 & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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Don’t Forget The Beautiful Season of Advent

In the hustle and bustle of preparing for Christmas I love the Advent season. This is the season the Christian church celebrates in the lead up to Christmas. It’s the start of the Church year and Advent Sunday marks the four Sunday’s before Christmas Day.

It’s a season of reflection and expectation. Advent is latin for “Coming.”

Hope

On each of the four Sundays of Advent, a candle on the advent wreath is lit. The first candle symbolises Hope.

Christmas celebrates the coming of Jesus as a new born baby in the most amazing circumstances. The Christmas story is full of hope. Hope for a brighter future, hope for times of peace, joy and love.

I can’t think of a better focus for the start of Advent. We all need the hope that Jesus offers.

“A feeling of expectation and desire for a particular thing to happen.” Oxford Dictionary 

While we might be enjoying a feeling of expectation about Christmas coming, good food, presents and catching up with family and friends, the candle of hope represents so much more.

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Peace

On the second Sunday of Advent Christians around the world continue to prepare for the joy ahead of celebrating the birth of Jesus on Christmas Day. The second candle represents peace. The words below come from a beautiful carol, ” I heard the bells on Christmas Day”

It has a lovely melody and stirring words. It’s another of my Christmas Day solo pieces in years gone by.  Just reading the words conjures up wonderful memories of my Dad playing the organ for me, while I rehearsed at home in preparation for the Carol Service. Special times!

I heard the bells on Christmas Day
Their old, familiar carols play,
and wild and sweet
The words repeat
Of peace on earth, good-will to men!

And thought how, as the day had come,
The belfries of all Christendom
Had rolled along
The unbroken song
Of peace on earth, good-will to men!

Till ringing, singing on its way,
The world revolved from night to day,
A voice, a chime,
A chant sublime
Of peace on earth, good-will to men!

Then from each black, accursed mouth
The cannon thundered in the South,
And with the sound
The carols drowned
Of peace on earth, good-will to men!

It was as if an earthquake rent
The hearth-stones of a continent,
And made forlorn
The households born
Of peace on earth, good-will to men!

And in despair I bowed my head;
“There is no peace on earth,” I said;
“For hate is strong,
And mocks the song
Of peace on earth, good-will to men!”

Then pealed the bells more loud and deep:
“God is not dead, nor doth He sleep;
The Wrong shall fail,
The Right prevail,
With peace on earth, good-will to men.”

Henry Wadsworth Longfellow

Joy

On the 3rd Sunday in Advent, the candle lit on the advent wreath represents Joy.

When we think of chronic disease and pain it can be hard to imagine feeling a sense of joy. The Christmas message isn’t talking about a frivolous passing joy that comes from enjoying a moment. It’s talking about a deep joy that comes from knowing that God cares for us and despite how bad our circumstances are now, there is hope for a brighter future.

“The angels sang a message of JOY! “…the angel said to them, ‘Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Saviour has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.”     (Luke 2:7-9)

Love

On the fourth Sunday of Advent we light the candle representing love.

What an amazing gift of love that God should send His Son to give us hope, peace, joy and love. What amazing love that this baby born on Christmas Day, was sent to save us from our sins and give us the hope of eternal life.

What amazing examples Jesus showed us, while he walked on earth, of how to love others. Loving our neighbours as ourselves. Showing grace and mercy to those we don’t understand, those in need, those who need love.

This is the essence and beauty of the Christmas message. This is what makes the Advent season so special. It’s four weeks of expectation, anticipation and it helps us understand why Christmas Day is so worth celebrating.

Happy Advent…

with love xx

 “For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.”    (John 3:16)

If you’re looking for genuine support, care, understanding & 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 & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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It’s “Chronically” Close To Christmas!!

It’s on its way! There is no stopping it! Christmas is coming!

That thought will either excite you or leave you trembling with trepidation. There may be an in between reaction but generally the Christmas/ Holiday Season and the lead up to the big day, is forefront of mind by mid November.

For those of us with chronic illness we tend to approach the season with a little dread mixed in with joyful anticipation.

We simply can’t keep up with expectations of others, or the expectations we used to put on ourselves in our healthier days.

Times have changed.

A Trip Down Memory Lane – Christmas Past

I love Christmas. First and foremost I love the reason for the season. I love that we are celebrating the birth of Jesus.

My Christmas pasts were filled with preparing Sunday School classes for the Christmas Eve Nativity play. Choir rehearsals for Carols in the Park. Helping my husband prepare Orders of Service for all the Christmas services so that those who attended, who weren’t usual church goers, wouldn’t feel lost and could participate and relax.

I had rehearsals to attend for my annual Christmas Eve Service solo performance of “It came upon a midnight clear”.

In between all that I was Christmas shopping, wrapping presents, decking the halls, baking our Christmas cake. I was also working full-time and involved in numerous Christmas celebrations at work.

Every year we would decorate the Banking department I managed. We’d put on Christmas treats throughout December for the 350 staff. Morning teas, afternoon teas, team parties, you name it…we did it!

I set up a department Christmas choir at work and complete with singers, guitarists, a violinist, bass player and trumpeter, we moved through each level of my departments building, spreading Christmas cheer  through song, like the Victorian Christmas carollers of old. So much fun!

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On Christmas Day I would head to church in the morning with my husband. After the service we headed together into my work, where we would hand out Christmas gifts to the staff on duty. We’d help set up a Christmas buffet lunch for everyone to enjoy and then we jumped in the car for a 2 hour drive to spend Christmas with my family.

It was full on. It was focused on giving and celebrating. It was joyous and rewarding on so many levels.

My New Way Of Celebrating – Christmas Present

Fast forward to today and those wonderful memories remind me that so much has changed. My love of Christmas remains. My joy in celebrating the birth of Jesus is even deeper.

My body, chronic disease and disability however prevent me from participating in those wonderful Christmas past activities.

So that could sound like the end of a very sad story. It’s not though. While I loved that full on Christmas celebration, I equally love the quieter relaxed Christmas that is my new norm.

I remind myself how blessed I am to have experienced such joy sharing Christmas so actively with so many, for so many years.

I remind myself how blessed I am now to have a wonderful husband to spend a quiet romantic “Christmas for two” with.

If I had expectations of myself that were unrealistic, this season would be awful. I’d either push myself beyond my capabilities and end up sick or in hospital, or I’d just feel miserable thinking of all I can’t do.

This is my 5th Christmas season with my bone disease. The first two Christmas seasons following my leg break were an adjustment period. I grieved my Christmas pasts. I missed not being able to go to church. I missed family and friends. My beautiful step family came from interstate on the second Christmas post my leg break and that was so special. It helped me have the best of both worlds that year. We had a quiet Christmas Day as they arrived Boxing Day. It was a lovely new memory created within my new limitations. It was such a timely visit as it helped me adjust my Christmas Expectations further, from old life to new life. It was a gentle bridge.

Last year I really embraced our “Christmas for Two”. It was one of the most special times Peter and I have ever had. We had no set expectations. We decorated the tree, we bought beautiful food, I set a table for two with all the trimmings, we listened to Carols, opened way too many presents ( I went a little overboard on online shopping) and we watched a Christmas movie in the evening.

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There was no set agenda. If we ate at 3pm it didn’t matter. If we didn’t get dressed up it didn’t matter.

If I was really unwell or struggling with pain, it didn’t matter. Expectations were non-existent. All that mattered was that we were together, relaxing and celebrating in whatever way we could.

All that mattered was that Christmas Day, the most wonderful day of the year had arrived.

This Christmas – Another Adjustment Period

This Christmas will require even more adjustment to the way we celebrate.

I’ve just had major spinal surgery and I’m struggling to move and function with the days normal essentials, let alone add in celebrations.

We have a plan though. Everything will be scaled back even more than last year. It has to be. We did consider canceling Christmas altogether but quickly reminded ourselves the reason for the season is not the tinsel and trimmings. It’s to celebrate the birth of Jesus and the gift of eternal life that He brings.

With that in mind and the fact that I love the tinsel and the trimmings, we will just approach everything on a mini scale.

Our fibre optic table top tree will be just as pretty as our gorgeous larger one and so much easier to enjoy decorating. I’ll be able to help without ending up in hospital so that’s a bonus! Our nativity scene will be the focus.

We are going to listen to carols and watch as many Christmas shows as we like.

We will have a Christmas dinner but will eat it in the lounge room in comfort while watching a movie or Christmas Special. We’ll keep it all very simple with easy to prepare festive food.

All I Want For Christmas

I need peace and quiet and no pressure. Isn’t that really what Christmas is all about? Peace on earth, goodwill to men?

Glory to God in the highest, and on earth peace, good will toward men. Luke 2 v 14  KJV

Time to heal, time to adjust, time to relax in peace. Time to reflect on what lies ahead.

That’s all I want for Christmas this year and I am so looking forward to it.

Mary and Joseph had a very uncertain and tumultuous time ahead of them that first Christmas. They needed to find a home. They needed to protect their baby from harm’s way.

Life doesn’t always run smoothly and the perfect Christmas card picture isn’t a true reflection of the real meaning of Christmas.

Whether you have chronic illness or not, sometimes stopping and questioning how you can simplify Christmas, can be quite the epiphany.

Now is a great time to set your realistic Christmas expectations. You can then head into this “most wonderful time of the year”, relaxed and ready to enjoy a very special and achievable Christmas…..one that’s just right for you!

Take care

Sam xx

If you’re looking for genuine support, care, understanding & 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 & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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

I also write @ Blogs by Christian Women

 

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The Spinal Surgery Recovery Road

I’m a week post L4/L5 laminectomy and decompression surgery. I’ve been home from hospital for 5 days and the road to recovery has begun. Well sort of. I really feel like I’m still in survival mode.

My Surgeon tells me we did the right thing proceeding with this surgery. My spinal cord was severely compressed and my legs are already feeling stronger and more stable than they were when standing and walking with aids.

A good early sign. The pain in my lumbar surgical site is quite another story. The pain is excruciating and I’m in for a long 3 months of healing, hopefully with no complications.

It’s still a little too early to say if the surgery has been a complete success. My Surgeon is being cautious and so am I. My body has a habit of behaving badly or surprising us with the most unexpected reactions, so we are right to be cautious.

Recovery Is A Process

One thing I have learned over the years is that recoveries can’t be hurried.  They need to respected. Time needs to be given and all precautions and post surgical instructions must be adhered to.

So from a medical theory perspective, a recovery sounds straight forward and very practical.

There is another side to the medical recovery process. It’s the personal effect major surgery has on your life, especially when you’ve had multiple surgeries over a short space of time.

The fatigue of constant pain from recoveries and often complications, seems never ending. I’m again struggling through the effects of waning General Anaesthetic and strong pain killers. Stomach pain, colostomy complications, lack of sleep plus sitting, standing, walking, bending and daily task restrictions, can really make the recovery process ahead a cumbersome time.

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Reflecting Through Recovery

Surgical recovery restrictions can give us the gift of time. We can choose to be frustrated and bitter about facing yet another recovery period, or we can choose to use the time wisely.

I’m choosing to take time to reflect, in the hope of discovering what my path for the best future possible will look like.

Reflection allows me to grieve the loss of my ability to run, to even walk normally, to shop, to go to church, to participate in life with the energy and passion I have always enjoyed.

I don’t ask why me, I don’t feel sorry for myself.

I’m tired of being in pain but I know I’m not alone in feeling this way. I know others face similar or worse battles. Others journey with me.

Strength In Sharing

The strength of my online support forum members, coming together and openly sharing their stories, clinging to the fact that they are not alone, is heart warming.

I also administer an online forum for parents who have children with Juvenile Idiopathic Arthritis. The courage of these parents struggling with the decision to either medicate their young children with toxic chemotherapy drugs, or take the risk of them having such severe damage to their joints they will be crippled for life, is both inspiring and excruciating to read.

Underlying all the individual stories shared in these forums, is a determination and strength never to give up but to make the most of every day. To accept the pain for what it is while choosing to find joy in the simple things of life. To look at life as a new adventure. To fight for some kind of quality in each day.

All grieving what is lost while also looking forward to finding new ways to live, new activities to enjoy and embracing new friendships formed out of adversity.

The Next Three Months

My recovery road is going to feel long. I’m no doubt going to have moments of wondering was the surgery worth it. I had one of those today and I haven’t even left hospital yet! It’s normal to have those feelings and I know to deny them will hinder my recovery.

With Gods grace, I’m going to ensure I focus on respecting this recovery period so I have the best opportunity of living a full and precious life.

Taking time to reflect is so important and I believe it’s the most important part of the healing process. It renews strength, resolve, courage and new dreams and hopes never thought possible, can be forged.

Who knows what new adventures I may be inspired to pursue on my road to recovery.

Take care

Sam xx

Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.

Lamentations 3:22-23 (NIV)

 

If you’re looking for genuine support, care, understanding & 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 & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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

I also write @ Blogs by Christian Women

 

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A Day Of Pondering Is Good For The Mind Body And Soul

Inspirational Quotes surround us in today’s world of Facebook, Twitter, Pinterest and Instagram. Throw away lines that 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?

A Day Of Pondering

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’ve just spent 8 days in hospital dealing with complications of severe lumbar spinal stenosis. The journey isn’t over but at the moment I’m just exhausted and I need peace, perfect peace.

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 after any lengthy hospital stay.

So as I ponder, 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 than my 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 sore but my soul is being renewed.

As my soul is revitalised, my mind relaxes and my pain is better managed.

Time out to ponder is definitely good for the mind, body and soul.

It is good 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.

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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A Cheerful Approach To A Chronic Situation

 

A cheerful look brings joy to the heart, and good news health to the bones. Proverbs 15:30

It’s a gorgeous morning. The sun is shining, the birds are singing.

I can hear children playing in the local schoolyard and a cool gentle breeze is blowing through my bedroom window.

I’m resting on my bed in the hope that my broken bones will soon cease screaming at me. Pain meds will take the edge off eventually and I’ll be able to stand long enough to sort out my stoma and get dressed for the day.

Sometimes You Just Have To Laugh

I’m not going anywhere today. I am pretty much housebound every day. Despite that I still like to dress as if I have something special to do.

Smart casual is my style…or it is now. It used to be corporate suits with high-heeled shoes. I miss that but I quite like my new wardrobe.

Everything has elasticated waists for comfort and ease of wear, plus that works better sitting over my stoma. I like slightly fitted, tunic style tops over 3/4 length bengaline pants. Both have to easily pull on and off and be made of slightly stretchy material to allow me to move freely.

The pants hug my legs a little, as this provides my broken bones extra support when I stand. A bit like bandages. So there is a slight method to my madness of getting dressed like this each day.

I’ve learned the hard way when it’s come to reinventing my wardrobe. My husband and I have been known to cut me out of tops that haven’t stretched, as I couldn’t pull my arms in the right direction to get out of them.

Sad….but oh so funny. On those occasions, through tears of laughter, I’ve managed to give my husband clear cutting directions while I’ve been stuck in the top. A great trust exercise!! Thankfully no one has been harmed during such a procedure. His handiwork has been so good, after each “surgical removal”, I’ve been able to turn the top into a jacket. Bonus!

You really do just have to sit back and laugh sometimes at such a ludicrous  situation.

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Letting A Cheerful Heart Emerge

Today and everyday I’m enjoying what I can do, rather than thinking about the things I can’t do.

It’s not easy.

A concerted effort over time was needed to change my mindset but it was well worth the effort. It’s always worth the effort.

That moment when the focus shifts to the possible, rather than looking at the impossible, is a life changing moment. It’s the moment a cheerful heart has room to emerge.

Don’t get me wrong, dreaming of the impossible, holding onto hopes and dreams, believing they can happen, is also important at times.

But when the very basics of life are verging on the impossible every day, a dose of reality and being grateful for what you can do, is so important.

A Chronic Situation

I’ve had a really tough few months with some bad news on the health front.

Among other things I’ve recently been diagnosed with Gastroparesis. I’ve also recently been reminded by my medical team, my rare bone disease is progressing and there is no treatment and no cure.

I’ve been reminded no further surgery can even be considered as I am such a high risk for permanent complications or worse.

I’ve been reminded by my Orthopaedic Specialist, my bone graft in 2016 just dissolved in a month as if it never happened. We are dealing with a rare complex disease that has a mind of it’s own. It’s not following any rules of medical logic.

My left femur is still well and truly broken nearly 4 years on from the initial break. It’s now classified as a permanent break. With the progression of my disease, my body is affected from head to toe with various ongoing fractures and muscular atrophy.

I can’t sleep or sit comfortably. Getting in and out of chairs or the car or any movement at all really, causes excruciating pain resulting in debilitating fatigue.

Pain medication only takes the edge off at best. I could increase the medication but it would completely reduce my ability to write, think and support others through my online forum. I would end up both physically and mentally disabled and that’s just not worth it.

It’s a chronic situation and one that requires me to make difficult choices to ensure I am living the best life possible.

The Best Medicine

I’ve needed some encouragement over the past few weeks. It’s can be a bit hard to come by when feeling so overwhelmed with pain and disease.

When the punches keep coming an encouraging word means so much, especially when you are really limited in what you can do.

Encouragement can come from friends and family, even strangers, or from something you’ve read.

A cheerful look brings joy to the heart, and good news health to the bones. Proverbs 15:30

This little proverb was on my calendar and it reminded me how much a cheerful heart really is the best medicine.

It encouraged me and confirmed I am on the right track when I focus on helping others, encouraging others.

I need to keep surrounding myself with things that encourage me and make me happy, so that I’m able to bring ongoing cheer to others.

It’s good medicine to do that. According to the Proverb, it even brings good health to the bones to give a cheerful look!!

So why are my bones so bad you may ask, especially those of you who know me well and know I give cheerful looks constantly?

Well, I don’t think it’s supposed to be literal. It means to give a cheerful look or to be cheerful, gives you a sense of well-being. When battling a chronic disease or dealing with any difficult chapter in your life, that sense of well being is exactly what is needed to help sustain you.

That being said, I did smile and felt very encouraged that the Proverb says “good news brings health to the bones”. A sense of hope flooded my soul and that’s a good thing. We all need hope and as a Christian, I believe and know that my seemingly hopeless situation is well and truly in God’s hands.

If God wants to send me “good news that will bring health to my bones”, then I believe that is absolutely possible.

In fact I do receive the gift of “good health” every day. Each encouraging interaction I have with others or each time I provide encouragement, I have a greater sense of well-being.

Without the good news of a cure or treatment, I am resolved to remain working on having a cheerful heart. It does make a difference to my overall well-being.

Giving cheerful looks and encouraging words to others, truly is good medicine.

Take care

Sam x

If you’re looking for genuine support, care, understanding & friendship, a place to share your seasonal changes & challenges,  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 & 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

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WEGO Health Award 2018 Nominee