A New Year Promise – Hope In The Midst Of Delights and Despair

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29 v 11 ( New International Version)

I love this verse of scripture. I can’t think of a better verse to meditate upon at the start of a new year.

Many people expect Christians to have little worries or concerns. We have faith, we have hope, we pray and we serve a living Saviour. How could we possibly enter a new year with uncertainties? Do we not trust God enough? Do we have doubts? What are we afraid of?

Like everyone else, Christians have hopes and dreams, fears, disappointments, good times and bad. That’s just life. The key is keeping our eyes fixed on God and holding on to His promises. Then we can enter the New Year with hope and anticipation of what lies ahead.

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When the Unexpected Happens

I was diagnosed with a rare bone disease in 2014. I already had serious autoimmune health issues but I was able to live with those with some limitations. The bone disease was a whole different story. My left femur broke in two spontaneously, followed a year later by my right femur fracturing. Then my feet and other bones soon joined in. No cure, no treatment, a progressive rare disease that doesn’t even have its own name.

I wasn’t expecting that to happen. Apart from severe pain in my left thigh, three weeks prior to the break, I had no real warning.

Would I have liked to know? The more I ponder that question the more strongly I feel that my answer is, “No. I’m so glad I hadn’t a clue”

If I had known what was to eventuate in 2014, I wouldn’t have lived my life to the fullest. I would have been waiting for that moment, planning for an event that was just going to have to take care of itself anyway. God knew it was going to happen and He knew every single detail of that moment that my leg snapped. He knew what I would need, who I would need and where I needed to be when it happened.

Seeing God in the Midst of the Unexpected

I was surrounded by evidence on that day that God had gone before and prepared a plan for me, a plan to give me hope and a future. My Aunt had just arrived in Australia from the UK for a holiday. She had recently retired as a Registered Nurse and she knew just what to do in the moment of crisis. My Cousin had also joined her on the holiday. As a strong young guy, he was able to help my husband move furniture so the paramedics could get to me upstairs. I was at home when the leg snapped and to me, that was the biggest miracle of all. We had 6 hours prior been at the International Airport picking up my Aunt and Cousin. How relieved I was that it didn’t happen there!

I really didn’t know what was to come from this event in terms of my life’s purpose. I was pretty much in and out of the hospital for the next two years having major surgeries and complications. All I could do was focus on surviving and trusting God that he would go before me every step of the way. Those two years are a bit of a blur but I do remember the amazing peace I felt at every turn. It was a peace that passed all understanding and I know God blessed me with it to sustain me.

At the end of 2016 as the New Year was approaching. I had a sense of losing purpose in my life due to my health. I was enjoying blogging but I couldn’t see anything ahead in 2017 apart from pain, more surgery, pain, repeat.

Following Where God Leads

Three weeks later, I heard that still small voice of God encouraging me to start an online support forum for people with chronic complex and rare diseases. It was concerning me that many people had such complex diseases that didn’t fit neatly into the particular box that other online support forums needed ticking. I had an overwhelming sense that chronically ill people needed a broader outlet where they could share as much or as little as they liked about their health and how it was impacting their daily lives.

So, I stepped out in faith and I started the forum on the 14th January 2017. I called it Medical Musings with Friends as an add-on to my blog. I really didn’t have a clue how I was going to reach out and find people with a genuine need to join the group.

A week later, “The Mighty” published my first article. I nearly didn’t submit the article because I felt I would probably be wasting my time.  I felt my writing wasn’t good enough.  The first submission never arrived as they had a system failure.  An email was received from the Editor, three weeks later, saying all articles submitted during certain dates must be resubmitted. That delay actually turned out to be another gift from above.

I again thought there was little point in submitting and I was about to delete the email when I suddenly felt, “oh just do it…you’ve got nothing to lose”. So I quickly decided to add my link to my online support forum and resubmitted.

That article was published the next day and resulted in over 1400 likes and countless people reading it and finding the forum.

The rest, as they say, is history.

The forum is turning two on January 14th, 2019 and has over 1600 members internationally. God knew the plans he had for me and the purpose he had for me was to reach out to others in similar situations to my own. Every little detail has been planned by His hand, not mine. The delay in my first article being published was an absolute Godsend. When I first submitted it I had no clue I would be setting up a forum.

Trusting God With Your New Year

God’s timing was perfect. God’s timing is always perfect.

Knowing God, loving God and serving God, doesn’t mean life will be without trials and tribulations. Quite often there are continuous twists and turns and spiritual battles along the way, especially when we seek to do His will.

2018 has been a year of many moments of delight and despair. That’s life. I know 2019 will also hold a mix of both experiences.

There is another verse of scripture that I hold very close to my heart, particularly when everything seems overwhelming and complicated:

“Beloved, do not think it strange concerning the fiery trial which is to try you, as though some strange thing happened to you; but rejoice to the extent that you partake of Christ’s sufferings, that when His glory is revealed, you may also be glad with exceeding joy” (1 Peter 4: 12-13 New King James Version)

If you are feeling concerned about the year ahead, step out in faith. God will carry you through every moment, day, week and month. You don’t need to worry about the intricate details. You just need to be in step with His plans and purpose for your life.

There’s a very fitting quote from Martin Luther King;

“You don’t have to see the whole staircase. Just take the first step”

Take the First Step

I pray every day of 2019 will be full of hope and anticipation, every step of the way.

Sam xx

 

This is based on my third article written for  Blogs by Christian Women.  It is an honour to be a contributor.

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

 

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Plans? What Plans?

As a New Year gets under way it’s usual to think about the year ahead and set goals both for your personal and business life and perhaps plan holidays or other adventures. I did that for years.

It’s summer in Australia and generally known as a holiday month. Schools are closed and many businesses are either closed or have reduced hours during January. Many of my Specialists are also on holiday, so that allows me a little time out from tests and appointments. I’m so grateful for a mini reprieve from the medical scene.

I’ve always loved the quietness of January, particularly when I was working, as it gave me time to slow down a little and think about the future and the year ahead.

Do You Have Plans?

I’ve been asked a few times over the past week “Do you have any plans for the year?” Since medically retiring that is probably the hardest question anyone could ask me.  Not that it upsets me or that I’m incapable of planning, it’s just that I haven’t been able to make concrete plans now for a number of years.

Well actually that’s not technically correct. I can make them, I just can’t guarantee I can achieve them and the likelihood is, I would have to bail out at the last moment if I did make them.

So as I pondered that question, “What are your plans for the year?”, I had to admit I don’t have any set plans for the New Year.

I have health hurdles and challenges that I intend to get through with as much grace and determination as I can muster. I have purpose in terms of writing and administrating my online support forum.

Outside of those activities, I am living one day at a time, often one step at a time…literally.

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Focus On What You Can Do

There is something quite liberating about taking one day at a time. I don’t know what lies ahead, none of us do. So instead of looking ahead for the next goal to be achieved, or the next adventure to come along, I am hoping to enjoy each special moment in each day. It’s all I can do.

Would I like to have a holiday booked? Of course.

Would I like to be able to work? Absolutely.

Would I like to be able to book a restaurant for a special occasion? Definitely.

I’d like to do many things. To say otherwise wouldn’t be true but focusing on what I can’t do isn’t going to help me live well with chronic disease.

Focusing on what I can do, no matter the limitations, helps me remain positive and outward looking.

Some of my moments are so full of pain that I long for those to pass. The moments when I can do a little bit more than the moment before it, I “plan” to enjoy as much as possible.

Living The Dream

I might not be able to set great goals or have planned adventures ahead but I’m still glad it’s a new year. It will be full of surprises whether I plan them or not. It will be full of joys and disappointments too. The best I can do, the best anyone can do, is to embrace each and every experience. If I do that I am embracing life and all that it has to offer.

I might not be able to make concrete plans, thanks to my rare disease, but after living a crazy life, before chronic illness, of copious plans, agendas, schedules, conferences, appointments and constant phone calls…..you know what? I can breathe, I can relax and just allow the adventure called “life” to unfold as the year rolls along.

So “What are my plans?”. I plan to live as well as possible, within my limitations and enjoy what I can, when I can.

I remember dreaming of having a relaxed, no agenda life when I was working and so exhausted. So I guess you could say I’m living the dream!!

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.

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

 

Please click here to read our Privacy Policy

“Let’s Go Fly A Kite”….Dreaming Dreams Despite Disability

If you love the original Mary Poppins movie, you will be very familiar with one of the songs sung by Dick Van Dyke, “Let’s Go Fly A Kite”

I’ve been singing it over the past few days as the lyrics and melody are so uplifting:

With tuppence for paper and strings,
You can have your own set of wings
With your feet on the ground
You’re a bird in a flight
With your fist holding tight
To the string of your kite

Oh oh oh
Let’s go fly a kite
Up to the highest height
Let’s go fly a kite and send it soaring
Up through the atmosphere
Up where the air is clear
Oh, let’s go fly a kite

When you send it flyin’ up there
All at once you’re lighter than air
You can dance on the breeze
Over ‘ouses and trees
With your fist ‘olding tight
To the string of your kite

Songwriters: Richard Sherman / Robert Sherman   Let’s Go Fly a Kite lyrics © Walt Disney Music Company

Wouldn’t It Be Lovely

Sometimes we need to dream dreams despite our disabilities.

Sometimes we need to close our eyes and imagine the wind in our hair as we run through a park, flying a kite.

Imagine skipping. Imagine dancing. Imagine walking in the rain.

As I imagine these lovely things a smile fills my face. I’m not sad. I’m simply daring to dream. It’s like watching a happy movie, I just happen to be the leading lady!

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So Let’s Go Fly That Kite….Figuratively Speaking

A new year is fast approaching. I have no idea what lies ahead. I don’t know what my body will throw at me from hour to hour. Trying to map out plans for a new year would be setting me up for failure and disappointment.

So, this year I’m going to “fly a kite”. I’m going to dream a little and set some loose goals that work with my disability. Goals that can happen or not happen…..it really won’t matter.

Dream A Little Dream With Me

So here goes….I’m dreaming of;

  • Rainy Days and Rainbows
  • A Book Deal
  • An Escape to The Country (Love that show)
  • Tea With the Queen…or Prince Harry and Meghan would be even better!
  • A Snowy Winter European holiday, flying first class of course

And a little closer to reality;

  • Quality time with family and friends.
  • Reaching out to support more people with chronic illness, through my online forum and blog.
  • A holiday, somewhere close to home.
  • Embracing new beginnings as my husband and I explore ways to further accommodate my health needs.

Dare To Dream

I so hope as you think ahead to the New Year, you take some time to dare to dream. Have fun with some pipe dreams and then take a moment to think of a few key things you would like on your “reality” list.

I know living with chronic disease is limiting and the thought of looking ahead can seem dismal. I get you may feel like there’s no point.

The point is, if you allow yourself to “fly a kite” for a moment, it can help relax your mind. With a relaxed mind you can have some fun dreaming dreams despite disability.

Who knows, you might even find you are inspired and determined to set a couple of realistic, high level goals….Goals that really could happen.

So, as we enter 2019 and embrace the dawn of a New Year………Let’s go fly a kite!

Love

Sam xx

Rejoice in hope, be patient in tribulation, be constant in prayer.

Romans 12 v 12

 

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

 

Please click here to read our Privacy Policy

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WEGO Health Award 2018 Nominee

 

 

 

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 those questions I realised the answer to both, 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 now as I was when I was actively employed and 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 delusional 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.

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

 

Please click here to read our Privacy Policy

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WEGO Health Award 2018 Nominee

 

 

 

 

The Tides of Chronic Illness

I was sitting at our local cafe this week, which is situated on a Point overlooking the Bay and beautiful Islands beyond. It really couldn’t be more idyllic and I am blessed to live so close to such a gorgeous place on Australia’s east coast.

As my husband and I were sipping our cool drinks and soaking up the gentle sea breeze, on what was a mild summer’s day, I was fascinated at how quickly the afternoon tide was beginning to roll in.

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Only moments before the water was still and there was no sign of change. All of a sudden ripples could be seen and the mud flats began to disappear before my eyes.

I rarely get out due to my health but this is one special place that I can manage on a good day and it’s perfect to sit back, relax and contemplate life. My thoughts turned to how quickly the tide changes in our lives when living with chronic illness.

One minute everything can be calm and stable and the next we are inundated with symptoms flaring, numerous medical appointments, x-rays and scans, blood tests, poking and prodding, emergency trips to hospital, feelings of bewilderment and concern. The tidal waves keep loudly crashing around us until the crisis is over and the seas are calmed.

I have one goal this year. Stay on calm waters! I’ve had too many years of tidal waves crashing over me with my health. I know most of that wasn’t within my control but I have learned some lessons that I’m hoping will keep me out of the firing line of sudden tidal changes.

As I looked to the right of where we were sitting at the cafe, there was a green tree standing tall and safe as the tide began to creep around it.

My aim is to be like that tree this year. Standing above the creeping symptoms of my disease and not allowing them to swamp me and drag me under.

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So while I know some health events will definitely be out of my control, my plan to simplify my life and avoid anything unnecessary includes:

Reduce Medical Appointments 

I have 6 Specialists on my medical team plus a GP.  I have been seeing 5 of them every 3 months. With the agreement of my Drs, less appointments means less running around and more time to enjoy “non-medical” activities. This year we are reducing to 6 monthly appointments for each Specialist. We have spread these throughout the year so I am not overloaded at any one time. If I do need to speak to them in between they are happy for me to email, phone or make an extra appointment.

Reduce Regular Tests

I need regular blood tests to monitor a number of my autoimmune diseases as well as regular xrays, bone scans and bone density tests to monitor my rare bone disease. In consultation with my Specialists we have reduced my blood tests to bi-monthly and my x-rays/scans to every 6 months.

I’m feeling a sense of relief just writing this!

Avoid Surgery Unless an Emergency 

I’ve had 7 surgeries on my legs over 3 years. I’m exhausted. In the last two I aspirated while under general anaesthetic. My Surgeon and I have agreed “no more surgery” unless a life threatening emergency.

Know Your Disease 

This is probably the biggest key to simplifying my life with chronic illness. I’ve been diagnosed with Rheumatoid Arthritis and Sjogrens Syndrome for 8 years now and it is pretty much under control. It flares but I know that we can’t change my medication because of the risks that has for my bone disease.

We have reviewed every possibility in terms of appropriate medication and we’ve brought in other Rheumatologists for consultation. We have exhausted our options.

I just have to manage my autoimmune disease flares conservatively with rest, heat packs and pain meds. It is what it is.

My Bone Disease is my biggest concern. It is completely unmanageable and has a life of its own. I have however discovered what is an emergency (pathological major fracture or pole breaking in my leg) and what is something I just need to live with (constant foot stress fractures, muscle atrophy worsening, muscle bleed).

I’ve also learned with my bone disease, any significant increase in pain or symptoms will usually reduce to manageable levels within 4 days.  If not I need to call my team asap.

Get Out More

With less appointments I won’t have to conserve my energy to be able to get to them. To prepare for an appointment, I can’t go out for the week prior and I need at least another week to recover. With the amount of appointments and surgeries I’ve had over the past 4 years, we have only been able to get to a cafe a handful of times and we have only taken my mobility scooter out twice since I got it 7 months ago.

That has to change and it now can.

I will be able to go out on better days and know that I have time, days or weeks if necessary, to recover from the “non-medical” outing. Such a lovely thought.

When I feel “the tides of chronic illness life” washing over me, as they no doubt will from time to time, I’m going to think about that green, tall tree standing upright as the tide creeps in around it.

I’m going to remember that there are things I can control and have changed.

I might get my feet wet but I won’t get swamped.

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

True Friends In Unexpected Places

When we think of friendship, we usually think of the people in our lives who have seen us through thick and thin. The people who we have perhaps grown up with, gone to school or university with, travelled with, played sports with or worked with for years.

We think of the people who we expect will always be there for us.

The truth is that friends often come and go. Sometimes that’s because we have relocated or had a difference of opinion or have just naturally grown apart.

We grow up, we change, we get married, have kids and often we find new friends.

The memories of special friendships stay with us though, as a photograph album in our mind to look back over when we want to be reminded of happy times spent together.

Chronic Disease Changes Everything

Sometimes, health issues can remove us from a “normal” social life that is often necessary to hold friendships together.

Sometimes health can get so complex that friends no longer know what to say, what to ask,  or are so distressed about what is happening to their friend that it becomes easier to slowly let the friendship slip.

We might think that sounds terrible but I think it’s also understandable.

Chronic disease changes everything, for everyone, just like other life changing moments can do.

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As a new life evolves for the person with the chronic disease, around medical appointments and accepting new ways of living with a disability, some beautiful friends will remain but more than likely new, special friendships will emerge….if we let them.

It can be all too easy as a chronic disease sufferer to feel hard done by and that response is also completely understandable.

Life is often changing at an accelerating rate, let’s face it… life is changing forever!

We Do Have Choices

Grieving over friendships that are drifting or are lost, needs to happen.

Once we have done the grieving, there comes a time to reach out and connect again, within our new limitations and with new expectations, of ourselves and others.

My online support forum celebrated it’s first anniversary on the 14th January 2018. I’m so excited that it’s survived and thrived through its first year.

I’m so excited to see such meaningful conversations daily and beautiful friendships and connections being made.

My aim in creating this forum over 12 months ago, was simply to help others as that’s what I love to do. I’ve always believed caring for others is what I’ve been called to do…it’s my life’s purpose.

Caring was at the centre of my work and life before chronic illness came along. Continuing to care in some purposeful way, now helps me make sense of this new phase of my life.

New Connections

The added bonus of the support forum, has not only been connecting others but also finding my own connections with like minded beautiful people, who I now call “true friends”. Such a blessing!

I’m so looking forward to sharing life’s adventures with true friends old and new, both in person and online.

Sam xx

 A FRIEND IS A GIFT OF GOD

 A poem from “Someone Cares” by Helen Steiner Rice

 Among the great and glorious gifts Our Heavenly Father sends

Is the gift of understanding that we find in loving friends

For in this world of trouble that is filled with anxious care

Everyone needs a friend in whom they’re free to share

The little secret heartaches that lay heavy on their mind,

Not just a mere acquaintance but someone who’s “JUST OUR KIND“

For somehow, in the generous heart of loving, faithful friends

The good GOD in his charity and wisdom always sends

A sense of understanding and the power of perception

And mixes these fine qualities with kindness and affection

So when we need some sympathy or a friendly hand to touch,

Or an ear that listens tenderly and speaks words that mean so much,

We seek our true and trusted friend in the knowledge that we’ll find

A heart that sympathetic and an understanding mind………

And often just without a word There seems to be a union

Of thoughts and kindred feelings for GOD gives TRUE FRIENDS communion.

 

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

Reflect and Restart

I really wasn’t sure if I wanted to reflect on 2017. Was it worth reflecting on my life with chronic disease? Did I achieve anything? Did I want to relive what at times felt like days and months of overwhelming pain?

One of my coping mechanisms, that helps me live well with my rare disease, is to live in the moment. I forget about the pain of yesterday and start each day looking forward to a better day or, at the very least, good moments within the day.

I have been encouraging my Forum members to reflect on the past year and think about the year ahead. I really do believe that it’s helpful to do that in preparation for a New Year.

I’m not a fan of New Year resolutions, particularly when living with chronic disease, as life is just unpredictable with so many things out of our control.

I am however a fan of being open minded to possibilities to grow and learn. I’m  really happy to get involved in new adventures, especially if opportunities present that are within my capabilities.

So, given I’d asked others to reflect, I couldn’t, in all fairness, expect them to do that if I wasn’t prepared to.

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With some trepidation I started reflecting and jotting down the highs and lows of my year. I decided to start with the good points and I was pleasantly surprised, as I walked back through 2017, at just how much I had achieved.

When living with chronic disease, we are so often overwhelmed with brain numbing pain, we can feel quite useless. The reality can be so different. Much to my surprise, reflecting on my past year revealed a very different reality to the one I had running around my head.

It’s been a good year overall:

The Highs

✔ Launched my online support forum, Medical Musings with Friends (my biggest achievement since being medically retired)
✔ Started writing for The Mighty
✔ Joined Chronic Illness Bloggers Network
✔ Further developed & expanded my blog
✔ Accepted as a permanent Writer for Blogs by Christian Women **Check out my latest article –  A New Year Promise
✔ Met so many amazing people from the confines of my home through all of the above…such a blessing
✔ No major surgeries for the first time in 6 years.
✔ Approved for a Level 4 care package… I’m on the national register waiting list
✔ Received interim Level 2 care package approval to be put it place by Feb 2018 ( I just received the letter advising me) This is to ensure I can get some care while waiting for the full Level 4 package to become available.

The Lows                                                 

✖ My November Hospital Stay  and Ketamine infusion. It didn’t work and if anything made me worse
✖ Came down with severe viral infection post infusion /hospital stay that I still can’t fully shake
✖ Bone/ Fracture pain remains my constant battle

My 2017 Takeaway…..Just because you are in pain and homebound, it doesn’t mean your life can’t have purpose. It doesn’t mean you can’t have realistic dreams and with passion, find ways to step out in faith and make them happen.

Shirlie-New-Years-Wish1

2018???

I have no idea and I actually quite like that. I’ll continue to blog and write and dedicate my time to administering my wonderful forum. Outside of that, I’m just going to take one day at a time and if opportunities present to do more, and I feel they are right for me, I’ll grab them and enjoy them.

So my 2018 is a case of “watch this space”. We’ll find out together how this next chapter of my life unfolds. I’m actually feeling excited about a new year. It’s the perfect time to push the restart button and create new achievements and experience special moments.

Happy New Year Everyone!

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.