The Tides of Chronic Illness Life

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

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True Friends

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.

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!

So, we have a couple of choices. Grieve over friendships that are drifting or are lost. That grief process needs to happen but 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 is celebrating it’s first anniversary today, 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 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.

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 the new year’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

Plans? What plans?

As 2018 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.

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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.

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 that I don’t have any set plans for 2018.

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 that I am living one day at a time, often one step at a time…literally.

There is however something quite liberating about that. 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.

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 for 2018, 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.

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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 life like that when I was working and so exhausted. So I guess you could say I’m living the dream!

Considering my underlying illness, that’s definitely a much better way to look at my life with no plans. For me it’s the only way I can live so I’m choosing to embrace it 😊

 

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.

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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.

 

 

A New Year Promise

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“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……

Here’s the link to ready my full published article:

https://blogsbychristianwomen.com/new-year-promise/

This is my third article written for “Blogs by Christian Women”. It is an honour to be a regular contributor.

 

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

 

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.

 

Thankful Thursday: I’m Feeling Grateful!

A beautiful uplifting blog post, from my very special friend Erin, who is reflecting on all the things she is grateful for.

Erin lives with multiple chronic diseases, including debilitating Gastroparesis. Despite her own struggles, Erin has been an amazing support to me, personally and as one of the key moderators on both my Medical Musings with Friends Forum and linked Twitter account.

I’m so grateful for you Erin 💗

Sam xx

 

A Chronic Spoonful

The Facebook group that I help moderate, Medical Musings with Friends, runs a weekly thread called ‘Thankful Thursdays’.

The wonderful lady who started the forum, Sam, encourages members to reflect on the things that we are thankful for each week. It’s an excellent exercise in gratefulness.

I’ve written before about being thankful, however I wanted to dedicate a specific post to some people and things that I am particularly appreciative for.

img_20171221_133649_3330001789319340.pngMy Husband

Within the first six month or so of dating my husband, I got pneumonia. He came to my aid and helped me out a lot. During our time dating, I was sick on and off, and had several bad injuries. He stuck by me, and made the decision to marry me. He didn’t know, however, that my issues would be permanent.

The last couple of years, when my health has declined, he has been…

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The Season of Advent – Hope, Peace, Joy and Love

In the hustle and bustle of preparing for Christmas I love the Advent season. This is the season the Christian church celebrate 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. Christmas celebrates the coming of Jesus as a new born baby in the most miraculous circumstances. A baby was to be born who was the Son of God and who brought the hope of salvation and everlasting life to a dark and cruel world.

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

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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. On this day the candle of peace is lit. 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 💗

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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)

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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 Christmas. This is so worth celebrating!

Happy Christmas…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)

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