Don’t Forget The Beautiful Season of Advent

December 1, 2018November 30, 2018 ~ Sam ~ 2 Comments

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.

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.

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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WEGO Health Award 2018 Nominee

It’s “Chronically” Close To Christmas!!

November 18, 2018December 1, 2018 ~ Sam ~ 6 Comments

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!

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.

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

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

I’m a member of the Chronic Illness Bloggers Network the Grace Girls Facebook Group and the Salt and Light Linkup Group

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WEGO Health Award 2018 Nominee

A “Hallmark Moment”….. In Chronic Illness Style

August 14, 2018August 19, 2018 ~ Sam ~ 20 Comments

I love celebrating special occasions. I’m a real “Hallmarks moment” kind of girl. Always have been and I suspect I always will be.

Cakes, balloons, lots of presents and good food. I love making the person who is celebrating their special day, feel like they are the most important and loved person in the world.

You would think I would realise that those days may be a bit beyond my reach now, wouldn’t you?

I should know, after 4 years with a progressive bone disease, mind over matter really doesn’t work. However, I seem to suffer amnesia when I begin to day dream about what I’d like to do.

I Can Do This…Can’t I?

As my husband’s birthday approaches each year, I try to convince myself I will be a picture of perfect health and energy, for just that one day.

I love him so much, there is no way I am not going to try to make the day extra special.

The fact I have broken femurs, broken feet and stress fractures riddled throughout my body is just too bad!! Surely I can just push through it all. (We all know I’m being delusional at this point).

He does so much for me each and every day. This is his moment to be pampered and have a day of treats and hopefully a rest. As a full-time carer he definitely deserves that.

The Idealistic Plan

Our first plan is always to go out for lunch, and we pretend in the lead up to his birthday we will be doing that. We pick the restaurant or cafe, check out the menu online and get excited.

We do this knowing it most likely won’t be able to happen. The effort for me to get out will spoil the day. By the time I get to a cafe I’m so exhausted it’s hard to talk, let alone make it feel special for my husband.

We know that at least at home I can pace the day and have the energy to get through all I want to do for him. At home I can lie down for 10 minutes here and there whenever I need to recharge a little.

The Realistic Plan

The reality is we won’t be going out for lunch. We’ll stay home and make sure that the day will focus on enjoying simple, special moments together.

I will be determined to make a great lunch, with my husband as my kitchen hand. Instead of a restaurant we will sit in our courtyard and both agree it is the nicest café we have been in for ages…even if we do say so ourselves!!

My husband will open a nice bottle of red he’s been saving for the day. I don’t drink due to my medication but I love seeing him savour every sip.

After lunch we’ll watch a movie on DVD, in “Gold Class” style, in the comfort of our lounge room.

We’ll drink coffee and enjoy a slice of birthday cake and perhaps indulge with a box of chocolates.

The Perfect “Hallmark Day”

It will be a really lovely day, just the two of us. It will be quiet in so many ways in comparison to what most people would consider a celebration.

It will be so special though as it will be full of love……our “Hallmark moment”.

No actually it will be our “Hallmark Day”.

Even though it will take me days to recover from something so quiet and simple, it will be worth every moment.

I will definitely be gearing up same time next year to do it all again for the man I love so much and who cares for me so beautifully every single day.

Happy Birthday Sweetheart 💝

Sam xxxx

1 Corinthians 13:13
Faith, Hope and Love, but the greatest of these is Love.

This post was shared at the Salt and Light Linkup Group

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

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Please click here to read our Privacy Policy

WEGO Health Award 2018 Nominee

Guest Blogger, Rachel Fearnley – Ponderings of a Passionate Maverick

June 17, 2018June 17, 2018 ~ Sam ~ Leave a comment

I am really excited to introduce you all to my Guest Blogger, Rachel Fearnley.

While Rachel doesn’t live with a chronic illness herself, she is passionate about raising awareness of what it’s like for families who live daily with someone who has a life limiting illness.

Rachel is a social worker who has worked with children and families for over 30 years. Her primary research interest area relates to parental life-limiting illness and the impact on children and families. Rachel works as an independent researcher / consultant and has recently written her debut novel which is about a family coping with life-limiting illness. Rachel’s website is – http://www.rachelfearnley.co.uk

I hope you enjoy Rachel’s Ponderings

Take care

Sam xx💞

Our Family and IT – Ponderings of a Passionate Maverick

How do parents tell their children that they have an illness that might not be curable? How do people contemplate having that conversation, which, let’s face it is probably the hardest conversation they will ever have to have?

These are questions that have interested me since I completed my PhD in 2010. I have worked for over thirty years with children and families in social care and have loved (nearly) every minute of it. My last ‘proper’ job was as the manager of a Barnardo’s family support service in the UK. We provided preventative support to families with young children (under the age of 8 years) and it was the most brilliant job. It was while I was there that I became increasingly curious about how serious illness, dying and death impacts on family life. I was regularly hearing stories from mothers about how following the birth of their babies they were struggling to cope with significant bereavements from their childhoods. In one of my headstrong moments I decided to apply to do my PhD (there are some notable events in my life where I have ‘done first and thought second’!). My research explored children’s experiences when a parent is at the end of life. It was a qualitative study as I wanted to hear the voices of children and young people and wanted them to have a platform to tell their stories.

After completing the research I started working as an independent researcher / consultant. During this time I have been employed as a part time Teaching Fellow and worked for different national and local charities where the emphasis is on life-limiting illness. I have written an academic book (Communicating with Children when a Parent is at the End of Life – Jessica Kingsley) and developed a resource for professionals working with children and families (Let’s Talk About Dying – Speechmark). In addition I have set up (sadly unsuccessfully) a local support group for children and families, and have delivered training sessions in universities to social work students.

Throughout this time I have been trying to raise awareness about children’s lives when living with a parent who has a life-limiting illness. There is beginning to be more support and recognition for bereaved children which is excellent, however, there remains very little for children who are living with an ill parent. This saddens me greatly as children often struggle during the illness because of all the changes and challenges that typically accompany illness.

My latest attempt to raise awareness is through my debut novel. Our Family and IT, is about how a family tries to cope following the mother’s diagnosis of a life-limiting illness. Although it is about a fictitious family the changes, challenges and issues that they are forced to manage are very real. I hope that people read the book and take time to think about the story. What support does the family receive, what support would they like and how do they manage some very difficult and painful situations? The book has been influenced by my PhD and draws heavily on all my research and work experiences. Writing it has been a challenge to balance ‘a good story’ with the desire to use it as a platform to describe some serious social issues. However initial reviews are very positive and reassuring. The book was (self) published in May 2018 and sales have been steady so far.

So what next for a passionate maverick? I think my priority is to stick with the social issues that are important to me and use the privileged voice I have to speak for those whose voices aren’t always heard!

Our Family and IT, is available from: http://www.ypdbooks.com/

Rachel Fearnley

I’m a regular 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 and the Grace Girls Facebook Group

Please click here to read our Privacy Policy

A Carousel of Memories and Moments

May 13, 2018May 18, 2018 ~ Sam ~ 17 Comments

One of my earliest childhood memories is being on the passenger ship “Aurelia”.

I was 3 years of age and embarking on a journey that would change the entire course of my life. I was migrating from the United Kingdom (London) to Fremantle, Western Australia with my parents and my older brother.

Fuzzy and Special Memories

My memories, of that long 6 week journey at sea, are a little fuzzy given I was so young but some stand out.

I remember the only food available was Italian cuisine. Not something an English 3 year old could adjust easily to, especially when dealing with sea sickness. I was given the only alternative for 6 weeks…canned baby food!

Another clear memory is of our little cabin. It contained 4 bunk beds, a basin and a small porthole. I also remember the intensity of sea sickness as our cabin was below deck and the journey was incredibly rough.

Fresh air on the top deck was a relief and it’s there that my clearest, most special memory lies.

I remember, while seeking comfort and relief from sickness in the fresh air, being on a small carousel or roundabout ride. My Dad was standing at the side. I can see in my mind’s eye his big smile and protective stance. I felt loved, safe and secure in his care. That first clear memory of my Dad epitomizes the wonderful relationship we have shared over the years.

Every time I see a carousel I am transported back to that memory. It’s a positive symbol of love and a happy moment.

Which Horse Will We Be Riding Today?

I was chatting to my husband today about my health. With tears streaming down my face due to exhaustion from pain, I told him I don’t think I can go on like this. It’s just too hard physically.

Everyday my symptoms are escalating. Everyday another bone breaks or re-breaks. I am literally consumed by pain. Short of filling me with so much medication that I would be in a comatose state or violently ill, there is no solution. No miracle drug, no easy answer.

I feel like my body is trying to kill me without knowing how to do it. It just tortures me.

I found myself trying to explain the unexplainable to my husband but what came out of my mouth stopped me in my tracks;

” I feel my health is like a carousel and each horse represents a different disease. Each day my body selects which horse to ride and takes me on a journey of a selection of symptoms. It’s a perpetual ride that goes around and around. It never stops”

It was the use of the word “carousel” that really hit me.

My beautiful childhood memory had suddenly moved into my adulthood in a way that was no longer sweet and innocent but torturous.

The analogy was so apt though. My husband said he wished he’d recorded what I’d said as he would love to play it to my medical team. Not that they don’t believe me, they do and they care deeply but he felt it described so well the agony of complex and multiple diseases.

He felt every inch of my pain. He cried with me.

Another Special Carousel Moment

In a strange way the carousel from my childhood and the connection with my Dad, now has a deep and tender connection with my husband.

As I used the carousel of symptoms as an analogy to explain my chronic disease ride, he could visualize exactly what I meant. He felt it as much as I did.

Somehow that helped. It didn’t relieve my pain but it relieved the emotional pressure of carrying the effects of my pain. It was shared. Truly shared in an intimate moment of complete understanding.

On this perpetual journey, my husband stands by my side with a tender smile and protective stance and despite my pain, I feel loved, safe and secure in his care…..just like I did with my Dad all those years ago on that carousel ride.

The saying “swings and roundabouts” feels very apt.

I will continue to ride on. I will always ride on but when I have those moments where it all feels too much, I’ll have the carousel memories and moments to muse upon.

Those moments that remind me, not of sea sickness or pain and disease, but of love.

Sam 💞

Love is patient, love is kind…..

It always protects, always trusts, always hopes, always perseveres.

Love never fails.

1 Corinthians 13 v 4, 7 & 8 (NIV)

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.

This post was shared at the Salt and Light Linkup Group

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

I also write @ Blogs by Christian Women

My Medical Musings

Medically Retired and Living a Life of Faith and Hope with a Rare Disease

Love

Don’t Forget The Beautiful Season of Advent