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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Gratefully Taking Nothing For Granted

“Life is too short, take nothing for granted”

These are catch phrases we have probably allowed to roll off our tongues at one time or another.

Both have so much meaning and I hazard a guess, a slightly different meaning for all of us.

On my Facebook Support Group, we have a weekly segment called “Thankful Thursday”. Members share a few things they are grateful for in their lives, in that moment, day or week.

It sounds easy enough but all of our members suffer from debilitating chronic illness. It can be incredibly hard not to be overcome by pain and symptoms.

Nevertheless, we do all find something good in our lives to share and celebrate. It’s a lovely uplifting segment that I look forward to each week.

As I was contemplating the things I was grateful for this week, I realised I was really struggling to honestly feel grateful at all.

Am I Grateful Or Am I Taking Things For Granted?

I’m absolutely exhausted with my constant pain levels. I know I’m mostly housebound but life is still way too busy.

I spend a good 40 hours a week on my Forum. I write, I network with other bloggers, spend time with my husband, do household tasks and look after our finances etc. Pretty much a full-time job while living with a debilitating disease.

I’m incredibly grateful that I can do all of the above. So grateful that I can use my mind as it helps distract me from my physical pain.

In that moment as I was thinking about my exhaustion and all that I was juggling, I realised there was something I was most grateful for. It was something I never want to take for granted.

A “Mind Full” Moment

My mind, my brain, my ability to think. I am so grateful for it but even more than that…..I found myself saying;

I want to use my mind while I can, I don’t want to take it for grantedI may not always have it”

Right there, right then, I felt every depth of gratefulness for being able to use my brain. Not just intellectually but in many other ways.

I can dream, I can remember wonderful moments in my past. I can manage my disease better by thinking through the consequences of my actions.

I can write, I can sing. I can enjoy TV shows because my brain allows me to follow story lines.

I can have lengthy chats with my husband while relaxing together.

I can make phone calls and organise household administrative tasks.

I can read and research.

I negotiate my health care and work in partnership with my medical team.

All of this and more is because my mind, my brain functions.

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Loss Causes Us To Re-Evaluate Everything

There are many things in my life that I don’t take for granted and many that I do and shouldn’t. We all do though.

  • I didn’t ever really consider losing the use of my legs but I have.
  • I didn’t ever really consider losing my independence but I have.
  • I didn’t ever consider losing my taste and smell but on most days I have lost both of these senses.
  • I didn’t think I would ever have a permanent colostomy but I do.

Loss causes us to re-evaluate everything. That’s not a bad thing, especially if it leads us to focusing on what we still have.

My gratitude for having a functioning mind is huge. There’s an underlying reason for that.

My beautiful Grandmother died from Alzheimer’s Disease and one of my Aunties is currently battling this insidious disease.

Does that mean I’m likely to also have the disease later in life? Who knows. It does however make me so aware of the gift of a functioning mind and that makes me never want to take it for granted.

Gratefully Take Nothing For Granted

I remember having viral pneumonia, 6 months before I was to be married, many, many years ago. I was in hospital and my parents and fiance had been told my Specialists  were incredibly concerned as I wasn’t responding to any treatment.

I was so focused mentally on getting well for my upcoming wedding, I didn’t for one moment consider not surviving.

What did concern me was that I couldn’t speak at all. I had never lost my voice like that before. As a singer my main concern was would I ever be able to sing again. I was also a Bank Manager at the time so talking was pretty important too.

I eventually recovered but it took 3 months for my voice to return. It was a scary time and from that moment on I have never taken my voice for granted.

If you are struggling with your chronic disease and finding it really hard to find anything to be grateful for, think about what you can still do. What part of your body is still working?

Think about what it would be like if that part of you ceased to work.

It won’t be long before you have something very tangible to be grateful for. Something that you will realise you can’t ever take for granted.

Before long you too will be gratefully taking nothing for granted.

Take care

Sam 💞

Bible Verse

When times are good, be joyful;
 When times are bad, consider this:
God made the one as well as the other, so people won’t seek anything outside of his best.

Ecclesiastes 7 v 14 (ISV)

 

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 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

This post was shared at the Salt and Light Linkup Group

 

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Music Makes Everything Better

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I don’t generally suffer from anxiety. It doesn’t mean I don’t get stressed in, or about, certain circumstances. Of course I do. We all do.

In general, my overall health situation doesn’t stress me. I accept it is what it is and I’m adjusting my life accordingly.

Pain however, when it is at unrelenting levels day after day, does cause great physical stress. Left unmanaged it can easily lead to mental stress.

I don’t usually show that I’m in pain. I can still talk and laugh through it and function mentally.

I’m doing that right now writing this blog post. It’s helping to distract me from the pain of four new fractures in my left foot, along with the regular daily pain my bone disease lavishes on me.

So while I don’t appear stressed, I’m very aware I am physically. I’m working full time not to let it mentally cripple me.

Take The Pressure Down

Whenever I’m in hospital the medical staff don’t take much notice of my outward demeanour in relation to pain. I’ll say it’s 6/10. They’ll take my blood pressure and say, “Sorry Sam, we think it’s more like 9/10.”

Once my pain medication kicks in, my blood pressure drops. Pretty easy deduction that physical pain causes a physical stress reaction.

My pain isn’t going to improve. If anything it will get worse, although I’m not sure if that’s really possible. Anyway, whatever happens there are very few options available to me now.

Pain medication definitely helps but only to a certain degree. I need other pain management tools to help reduce the stress of pain.

I have a few tips that I’ve shared in a number of blog posts. My Body Behaving Badly post might be one of the most helpful.

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Music Soothes My Soul

My favourite and most effective “natural” pain management tool is listening to music.

When I wake in the morning I literally can’t move. As soon as I try and stand my broken bones create their own musical sound which is far from heavenly.

I’ve found over the past year that if I want to complete a physical task around the home, like making the bed or doing some light housework, I need to implement some kind of pain management distraction therapy.

Here’s where music works for me. As soon as I play my favourite songs I begin singing. My mind becomes focused on the music and the words of the song. I listen to music that is special to me. Mostly that’s a variety of gospel music but I also love country and folk type music too.

I still feel my pain. Each step causes sharp shocks through my body but it’s not at the forefront of my mind. That small change of allowing the music to flood my mind, allows me to complete the task I want to do. The music soothes my soul and that reduces stress, which in turn helps reduce my sense of pain.

Music Is My Reward

Over the past few months I’ve taken my music distraction therapy a step further. I’ve created a discipline where I don’t listen to music unless I’m completing a physical task.

That may sound a little odd but it means I now look forward to doing some physical tasks each day, rather than cowering at the thought of them, as they are now linked to a reward.

Physical tasks = my music sessions, listening to my favourite songs. They ignite a happy positive image in my mind rather than a crippling painful one.

Now my idea of what’s an important physical task will likely be different to yours. For me it’s important to get dressed nicely each day, make the bed, keep the house tidy etc. I don’t want to feel like a patient or like I’m unwell, so doing these things help me still hold on to some semblance of normal. It’s important for my mental wellbeing.

Not to do these tasks would cause me mental stress which would only aggravate my physical pain further.

A Sensible Approach

I still have intense limitations even while happily listening to music. I pace all my activities and I can’t be standing or upright for more than 30mins at a time. I have severe pain during those 30mins but it won’t cause me to be laid up for days if I adhere to my 30min limit.

If I try and push through that I generally end up with a new foot fracture…..yes I have learned the hard way. Yes, I have been a slow learner.

So, if you want to try some music distraction therapy to do a task, here’s my tips but please be sensible;

  1. Think through how to go about the task in a way that won’t aggravate your pain;
  2. Set a time limit. Start slow and build up to longer tasks as you test your bodies limitations;
  3. Set a playlist on Spotify or however you listen to music. Make sure it is only going to play for the length of time you need to be active. It’s a great timing system – music stops, you stop;
  4. Enjoy yourself. Pain takes so much from us. To have 5, 10 or 30mins of physical movement listening to music you love, is just pure joy;
  5. Be careful with upbeat music. I actually had some great toe tapping music on the other day and I started to dance a little. I know, I know….completely crazy and there were major consequences. So my advice is uplifting music is great but not anything that makes you think you can fly.

I’ll Leave You With A Favourite

Whispering Hope is an old hymn with a beautiful melody and absolutely perfect words for anyone experiencing pain and suffering. It’s a bit of a tear jerker but sometimes a good cry also helps relieve physical pain a little, so I listen to a mixture of soft and upbeat songs.

The words below are the first verse and chorus. The You Tube clip is Hayley Westenra, a beautiful New Zealand singer with the voice of an angel.

I hope you enjoy a bit of music that soothes my soul. 💞

Whispering Hope

Soft as the voice of an angel,
Breathing a lesson unheard,
Hope with a gentle persuasion
Whispers her comforting word:
Wait till the darkness is over,
Wait till the tempest is done,
Hope for the sunshine tomorrow,
After the shower is gone.

Refrain:
Whispering hope, oh, how welcome thy voice,
Making my heart in its sorrow rejoice.

 

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

I also write @ Blogs by Christian Women

This post was shared at the Salt and Light Linkup Group

 

Joy in the Morning

I have just had the night from hell. Pain has soared through every bone, muscle and joint in my body as my bone disease attacks from every angle.

I woke from a deep sleep screaming at 2am, causing my husband to jolt upright and run to my side. I couldn’t move any limb. I was rigid with a pain that I am struggling to describe.

Broken

Broken. That is the only word that comes close to it. Physically broken.

It was like lying on a bed of nails with bricks placed on top of me and someone standing over me hammering the bricks into my body.

I rarely cry, I didn’t cry last night but I groaned. The pain was too intense to cry.

My husband was again my hero. He made a cup of tea, he sat and chatted with me while we waited for extra pain killers to take the edge off. He loved me through the pain, in the midst of the pain. He was amazing 💗

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Hope

As I sipped my tea last night I was reminded of a beautiful verse from the Bible;

“Weeping may endure for a night, but joy comes in the morning” Psalm 30 v 5

As I mulled over the words of this verse I knew that I would feel joy in the morning.

Joy that the night from hell was over.

Joy that the sun was shining through my windows.

Joy that my morning meds would bring a better level of pain relief.

The thought of that joy to come and knowing that this night of pain and sheer agony would not be forever, brought a sense of calm and hope as I lay back in my bed.

Joy

I have woken to sun shining through my window. I do feel joy that the night is over.

I can feel my morning meds reducing the severity of my pain. I have laughed with my husband.

I have been encouraged by a beautiful post on my support forum, reminding me of one of my favourite hymns:

I heard the voice of Jesus say, Come unto me and rest;

Lay down, thou weary one, lay down; Thy head upon My breast”

I came to Jesus as I was, weary, and worn, and sad;

I found in Him a resting-place, and He has made me glad.

Despite the pain, in the midst of the pain, joy has come in the morning.

My hope was not in vain. It is never in vain.

Take care

Sam xx

This post was shared at the Salt and Light Linkup Group

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 also a Contributor at The Mighty

I also write @ Blogs by Christian Women

 

There is Something Good in Every Day

There is something good in every day.

Is there? Is that even a possible concept for those of us who have chronic illness?

The initial response from the chronic illness community is likely to be a resounding “No”.

Pain, procedures, lack of sleep, lack of understanding, countless medical appointments and tests, chronic fatigue, lack of mobility etc. These all overwhelm the mind and body and constantly try to draw our focus away from seeing the moments of joy.

Moments that are good despite everything our bodies throw at us.

 

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It’s Not All Bad

It’s a cooler morning and being a lover of the cold, I’m a very happy gal. I’m still in bed having slept in after a disturbed night and my beautiful husband is downstairs getting breakfast for us.

My legs don’t move in the mornings until my pain meds start to kick in. Even then I struggle with mobility and pain constantly throughout the day, due to my the non healing breaks in my femurs and feet.

These are as a result of my rare bone disease. Rheumatoid Arthritis also plays a big part in causing constant pain in my hips, hands, neck and shoulders.

So while all is not good, there is definitely something good to start my mornings. I feel very spoiled to have breakfast in bed every day delivered on a lovely tray. It’s a special bonus found in a chronic situation. A necessary bonus but how nice that something necessary to manage my health can actually be a “good” thing!

There Is Plenty Of Good

There are other “good” things I enjoy every day. Some days they are a little harder to find but they are always there….I just have to look for them.

I enjoy my home. I enjoy pottering in it. I enjoy my soft furnishings and the pretty uplifting areas I’ve created to provide places to rest comfortably and renew my strength. It’s my sanctuary.

I love my online forum and conversing every day with others who truly understand what it’s like living with chronic and complex disease.

I love that I have the time to invest in this community and administer it in a way that makes it a safe place for others. I also enjoy actively being involved as a member of a couple of other select online forums.

I love being able to muse and write when moments of inspiration arrive ( or just when I feel like it anyway 😊)

I love listening to music. I love singing.

I love watching my favourite TV shows at lunch time and during my late afternoon rest period.

I love the relative freedom that has come with medical retirement. I obviously miss my work and good health, but I am so relieved not to have undue pressures I can no longer physically cope with.

The more I look the more I find the good in every day. My list could be expanded but I’m going to stop and enjoy one of the things I really love….my late morning coffee ☕

What little bonuses do you enjoy as a result of your chronic illness? You might be surprised to find what good things have been added to your life when you stop to think about that question💗

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 and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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

 

How Can I Keep From Singing?

I have sung all my life. School Choirs, Church Choirs,  solos. Music and singing have been like food and water to me. They feed my soul.

Over the past few years I have longed to sing with the energy and delight I used to sing with. My bone disease, pain and constant surgeries, has left me physically disabled and exhausted.

My attempts to sing have often resulted in a croaking flat sound, rather than anything that had any semblance of being uplifting, for me or anyone else! So I have limited my singing around the house. I need to conserve my energy.

A Christmas Miracle

This past Christmas I managed to get to a carol service at our Parish. Getting to church has been impossible thanks to my over active stoma in the mornings.

My constant broken bones and non healing femur break, make any activity outside of my home near nigh impossible. So this was more than just a small achievement….it was a Christmas miracle.

Thankfully the carol service was in the afternoon. Dosed up on pain killers I was determined to get there. I didn’t know if I would be able to sing at all after being so silent for so long.

I didn’t care what I sounded like I wanted to sing, my soul wanted to sing. It was time.

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“Then Sings My Soul”

I opened my mouth to sing the words of a familiar carol and sang my heart out. To my surprise, my voice seemed stronger than ever before. It was effortless and I sang carol after carol with gusto. I was literally in heaven.

After the service my husband said he had never heard my voice sound so beautiful. Resting it for so long was obviously a good thing but it was more than that.

I have always sung songs of faith. They are my first love. Finding my voice when I thought it was lost was such a gift, such a blessing. I realised I hadn’t totally been consumed by my disability, my pain. Somewhere in the midst of everything, on that December afternoon, I was given back the gift of singing.

“To That Rock I’m Clinging”

This week I was listening to a new CD by Celtic Women. I love their music. They mostly sing traditional Irish Celtic/Folk music. They always have songs of faith on their albums, amidst their other beautiful inspirational music choices.

My heart skipped a beat when I heard one of their new songs “How Can I Keep From Singing”. I seemed to know it instantly. I listened closer and I was sure it was an old hymn that I sang as a child.

Some of the words seemed slightly different but the message was still clear. No matter the struggle and the pain and the tumult, we have a Rock where we can take refuge, so how can I keep from singing.

I searched the origins of the song and yes it was a hymn sung in the 1800’s. The slight change to the words were written by Enya but the message remains the same.

I have played the song over and over and over this week. I have also sung it over and over.

The most amazing thing I realised this morning, is that when I sing, I don’t have any pain. In those moments my soul is lifted high and I am transported to a place that is pain free, despite my broken bones.

A taste of heaven to come.

How can I keep from singing!!

 

(Original Words from 1868)

My life flows on in endless song;

above earth’s lamentation,

I catch the sweet, though far-off hymn

that hails a new creation.

 

Refrain:

No storm can shake my inmost calm

while to that Rock I’m clinging.

Since Christ is Lord of heaven and earth,

how can I keep from singing?

 

2 Through all the tumult and the strife,

I hear that music ringing.

It finds an echo in my soul.

How can I keep from singing? [Refrain]

 

This post was shared at the Salt and Light Linkup Group

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

I also write @ Blogs by Christian Women