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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“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

 

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Suddenly So Surreal

When you’ve lived with Chronic Illness for a number of years, at some point, you adjust to a new way of living. You eventually find a new norm.

While you might expect a few highs, lows and some disease flares along the way, generally life evolves into a settled and comfortable pattern.

Until it suddenly, without warning, doesn’t anymore!

Sometimes after years of living a new and well-adjusted life, something changes. Something that causes your disease to suddenly seem so surreal.

Something that threatens to once again create a world of chaos and disorder.

Something that will force you to find another new norm.

Surreal and Scary

My rare bone disease is the biggest concern in terms of progression and worsening disability. I have known that since the outset.

It’s insidious. It attacks without warning and when it does, it breaks my bones and refuses to heal them. If it doesn’t break them it destabilised them, causing excruciating pain as the bones die.

I thought I had a good handle on the nature of my disease and in general I do.

However, the latest attack has been so severe every aspect of my life needs to be reviewed.

It’s surreal and I need to admit to myself……it is scary.

In the space of 2 months I’ve gone from being chronically disabled, using crutches and a walker to mobilise, to severely disabled, with the very real possibility of being permanently in a wheelchair. Permanently unable to do some of the simpler day to-day basic care tasks without help.

My pain levels in my lower spine are currently unbelievable. They are beyond anything my broken femur threw at me. The consistent throbbing is almost audible.

So far conservative treatment has failed and even my recent lumbar laminectomy/decompression surgery may not deliver the desired results.

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Big Decisions At Every Turn

Big decisions are confronting me at every turn.

I know I will find a way to adjust. At the moment though I am being swamped in a sea of surrealism.

My issue is the life my husband and I currently live, doesn’t fit a wheelchair bound scenario.

Our home is all wrong for a start. We need a low set home and it needs to be a little smaller and manageable.

The thought of making such a huge change in our lives, while I’m looking down the barrel of more surgery and a long recovery, is so daunting. Even without the prospect of surgery, my pain is just so constant I need stability, not change, to help manage my situation.

I’m not physically capable of doing anything to help with a house move. I can thankfully organise anything that’s thrown at me, so I’ll be focusing on using this skill to facilitate any necessary changes.

Before any of that can happen I have to shake off this surreal slump I’m in.

Shake It Off

Don’t worry, I’m not about to break out in a Taylor Swift song.

I’m going to work through a process of how to shake off this surreal situation and bring it into the world of realism. Better still, I’m planning on making my new reality my new norm, as quickly as possible.

So here’s my plan:

  1. Allow myself to feel the shock and horror of my situation. Denial of these feelings won’t help me move on.
  2. Take a little time out from normal activities to digest what’s happening to my body. My brain needs to catchup with the physical manifestations of my disease progression.
  3. Talk with my husband about how I’m feeling and what these changes will mean for both of us. Talking out loud helps to make a surreal situation more real.
  4. Begin talking to family and close friends about the changes we are facing.
  5. Start taking practical steps towards changes required. Researching various options is a good starting point.
  6. Make lists. Writing down the details of required changes also helps make a situation more real. It’s gives a sense of ,”ok we are really doing this”
  7. Rest. When life throws us challenges that rock our world, we need replenishing. Rest is vital to keep as positive an outlook as possible. That doesn’t necessarily mean sleeping but just doing something that helps you relax. Something that centres you and reminds you that some old norms will still remain.

Feeling A Little Better

When life suddenly seems so surreal, it’s not going to just as suddenly become all ok.

Shock is involved and that takes a little recovery time. The grief process is revisited yet again.

Little by little you will begin to feel better. A small decision will be made that is a catalyst for a larger change. Before you know it you’ll be on a journey towards a new norm.

So as my sea of surrealism keeps washing over me, I’m going to remind myself I have a good track record of adjusting.

I’m going to remind myself that I have a solid simple step plan to follow to help me move through the deep waters to the shoreline.

I’m going to remind myself life will evolve into something beautiful again.

I’m going to remind myself that God has always provided me a safe passage through the storms of life, no matter the depth of the challenge.

With that thought, peace and hope returns.

Life will be ok. Different but ok.

I’ll be ok!

Sam xx

Will your anchor hold in the storms of life

Author: Priscilla J. Owens

Will your anchor hold in the storms of life,
when the clouds unfold their wings of strife?
When the strong tides lift, and the cables strain,
will your anchor drift, or firm remain?
[Refrain:]
We have an anchor that keeps the soul
steadfast and sure while the billows roll;
fastened to the Rock which cannot move,
grounded firm and deep in the Saviour’s love!

2 Will your anchor hold in the straits of fear,
when the breakers roar and the reef is near?
While the surges rave, and the wild winds blow,
shall the angry waves then your bark o’erflow?

 

If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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

I also write @ Blogs by Christian Women

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

If you would like to read a little more about my journey, here’s the link to My Story

Please click here to read our Privacy Policy

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In Sickness And In Health, There Will Always Be Good And Difficult Seasons In Life.

I love turning over the calendar at the beginning of a new month. I have a pretty wall calendar in my study so I can anticipate revealing a new picture on the 1st day.

It’s a symbolic act in some regards, of saying goodbye to the old month, the good and the bad. I like looking forward with wonder as to what the month ahead will hold. I always hope that it will be a month full of blessings, while realistically praying for strength to handle the difficult days.

Some new months herald a season change which always adds to my musings of what lies ahead. New seasons are a reminder that nothing is stagnant.

As with the extremes of weather, not all changes in life are welcome though. There are always twists and turns, both good and bad.

The Seasons of Life

Whether we have good health or chronic illness, life has seasons. Living with chronic illness does tend to heighten the adverse impact of life’s ordinary difficulties.

Things will happen though that are not connected with our chronic disease. They are just normal life events.

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However, living with chronic illness adds a complex layer to these normal seasons of life. The good times can seem intensified as we know what it’s like to experience the depth of pain. We so often have to miss out on special events because of our illness, so when life is good, it feels extra good. It can feel euphoric.

Sometimes when life throws curve balls at us (not health related) we can, if we are not careful, make them feel larger than they really are.

Dealing With The “Ordinary” Unwanted Life Events

With chronic illness we are constantly experiencing pain, fatigue and niggling concern about our health and the impact it will have on our future. This can easily make us less tolerant of even the ordinary unexpected and unwanted life events, that interrupt the smooth flow of our day or week.

An argument with a loved one, the inconvenience of an appliance breaking down, someone on the phone being less than helpful etc, can quickly become catastrophic in the life and mind of those battling chronic disease.

If you are experiencing a season when you feel like everything is against you, just take a step back for a minute. Sit quietly and think about the issue that is distressing you. Is it as bad as you think?

Does it feel like the last straw but in actual fact the main issue is that you are just too tired to deal with it?

Taking Time Out

By taking time out to stop and think calmly about your difficult day or season, you might surprise yourself and find a way to handle it, without it being blown out of proportion. Without it causing you undue health repercussions.

On the flip side, if you are experiencing a season of joy and good times, enjoy every minute. Those times are priceless and deserve to be celebrated, especially for those living with chronic disease.

“There is a time for everything, and a season for every activity under the heavens.” Ecclesiastes 3 v 1

I hope and pray every new month and new season brings you much joy, even with the challenges that chronic disease will always bring.

Just remember to try and keep everything in perspective and stop and breathe when life’s circumstances and health issues feel overwhelming.

The title of a well known book comes to mind… “Don’t Sweat the Small Stuff”

Take care

Sam xx💗

 

If you’re looking for genuine support, care, understanding & friendship, a place to share your seasonal changes & challenges,  you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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

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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Meet The Admin Team

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Medical Musings with Friends started in January 2017. I was resting one afternoon in my bedroom, contemplating the new year ahead and wondering what possible purpose my life could hold, as my body kept spectacularly attacking me from every angle.

I have a Rare Genetic Bone Disease with multiple bone breaks, ongoing surgeries, severe spinal stenosis compressing my lumbar spinal cord, Rheumatoid Arthritis, Permanent Colostomy due to a bowel prolapse, Fibromyalgia, Sjogrens Syndrome, Trigeminal Neuralgia, an Idiopathic Inflammatory Nerve Disease, plus a few other issues. It can be slightly overwhelming when the list adds up.

I suddenly had an idea, a slightly crazy idea, that maybe if I set up a closed forum for people with chronic, complex and rare diseases it could be an extension of my blog.

A place where a few people could gather to provide support and genuine understanding. A place where it was ok to “muse” about how complex life gets when you have more than one illness.

A place where you know others wouldn’t get scared by what they read but would feel your pain and understand your struggles. A place where other chronic illness bloggers and writers could share their work and words of wisdom.

A few people, maybe 50, or so I thought.

Within 6 months we had over 1400 members and 7 moderators assisting me. We continue to grow our membership weekly which still amazes me.

Unbelievable!! What a blessing, what a purpose, what an honour and privilege, to be trusted to provide such a large group of people a place to find true friendship, support and understanding.

So, I thought it was time to introduce more formally my beautiful team of moderators. They have each provided a short bio to tell you in their own words a little about themselves, plus a photo.

I can’t thank them enough for their personal support and commitment in joining me in this crazy musings journey. They are just the best, most warmest, caring people you could meet and they all volunteer their time while living with their own complex chronic diseases.💗💗

Sam Moss

So, here’s me…I live with my beautiful husband Peter, who is also my full time carer. We live in a stunning Bayside village in South East Queensland, Australia. When I’m not busy chatting with you all on the forum, I’m usually found blogging here on “My Medical Musings”  or writing articles.

If you would like to read a little more about me here’s the link to My Story

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

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Sam Moss – Founder/Administrator (Australia)

 

Nik Watson

I have lived with Auto Immune conditions since I was 11 years of age and they add up to SLE (Lupus), RA, Osteoporosis and Ménière’s disease.
I’m known as Nik Puppykins…lover of two fur baby dogs. I have two, which, in conjunction with my gorgeous Mum, light up my life every day.

(Yes… I live with my wacky, meddling, inspiring, gorgeous, loving Mum ❤️)
My life is positively wonderful and full,  despite many episodic hardships over the years.

My motto is:

“One life…live it now, well, with joy and love and inspire others to do the same”
Family, friends, puppy cuddling, photography, market wandering, coffee, sushi, blue cheese, travel (and probably a few other loves I’ve forgotten!)..complete me. 😘😘

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Nik Watson ( Australian Moderator)

 

Dave Head

Hello there my name is Dave, I’ve been married for 9 years, my wife and I have a 7 year old daughter as well as a 5 year old son.
Before the age of 21 I was rather healthy. In 2003 I was admitted to hospital and diagnosed with Ulceritive Colitis which after a few weeks in hospital it was determined I would require an Ileostomy. The Ileostomy is no permanent which is something I don’t mind at all.
In 2007 I was diagnosed with Multiple Sclerosis. This was a significant changing point in my life to say the least. I have been on three treatments for my MS, one of which did cause seizures at least one confirmed Gran Mal.
In 2012, I began to develop issues with my skin on both legs, arms as well as my back. After a number of doctors mis diagnosed the issue I was given the proper diagnosis of Pyoderma Gangrenosum. A very rare skin disease likened to having Ulceritive Colitis on the surface of the skin.
On a daily basis I have issues with my MS, my right shin has lifelong significant damage from the PG. I have come to a point I cannot work Full Time as it simply takes too much out of me. I began a blog in January 2017 in the hopes of sharing my experiences while helping others through their challenges and to understand they are not alone.
I am truly grateful for being a member of such an incredible group of individuals. We all have commonalities and are here to support, encourage and sometimes just listen.
Below are the links to my blog as well as Social Media feedsbforbthosebthat may be interested in learning or asking more.

https://livingyourlifethroughtime.wordpress.com
Instagram~ davehead40
Twitter~ @DaveHead40
Snapchat~ https://www.snapchat.com/add/davehead40

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Dave Head (Canadian/US Moderator)

 

Erin Scott

I’m originally from Southern Ontario, Canada, but moved to England almost 7 years ago, where I met my husband. I used to teach, and gained a MSc in Psychology, hoping to move into a field I could handle with my health. I’m not able to work right now though. I love tea, music, literature and writing, dogs, making cards, and I’ve recently started painting!
I have chronic pain issues, gastroparesis, and migraines with brainstem aura (basilar).

https://achronicspoonful.wordpress.com/

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Erin Scott ( Canadian/US Moderator)

Courtney Soutar

Hi Musers, I’m Courtney and I live in North East Victoria. I have Crohns (with an ileostomy) and Fibromyalgia. My loves include dogs, tea and my family. I try and live by the motto of ‘laughter is the best medicine’❣

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Courtney Soutar ( Australian Moderator)

 

Brigitte Oram

My name is Brigitte but everyone calls me Brig. I have 3 kids (2 teenagers and a tween going on twenty!)

I am generally a positive person, even though I deal with multiple health problems on a daily basis (including a Colostomy named Rosie, insulin dependent Type 2 Diabetes, Anxiety/Depression and the aftermath of Pulmonary Embolisms and an Ischemic Stroke).

Up until 2 years ago, I worked as a Support Teacher specialising in learning support and special education. I absolutely loved it, but I became too unwell and was spending a lot of time in hospital.

I love to make others laugh and have been told I have a cheeky sense of humour. I also enjoy arts and crafts, board games, adding to my owl collection and listening to music.

I feel very blessed and proud to be a part of this awe-inspiring group, I think you’re all so brave and amazing. Thank you for entrusting us with your stories and I look forward to getting to know you all.

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Brigitte Oram (Australian Moderator)

Nicole Loffler

I’m Nicole, happily married wife to Ben and mother of two remarkable young people (18 + 21) from Western Australia. My health journey started over 20 years ago, when I was diagnosed with Ankylosing Spondylitis and Ulcerative Colitis. I also have Gastroparesis, Fibromyalgia, Sciatica, Lung Disease and Functional Neurological Disorder.

I’m also in the unique position of being carer for my beautiful daughter Alysha, who has significant health issues as well. It is heartbreaking seeing her so unwell and in pain, but it has given us an extra special bond.

I’m an avid cook, addicted to cookbooks and am a huge MasterChef fan. I grew up on a farm and love animals, especially my beloved 17 year old cat. I enjoy scrapbooking, sewing and puzzles.

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Nicole Loffler ( Australian Moderator)

Clare Rayner

Hi, I’m Clare. I live in a suburb south of Manchester, England. I love Medical Musings with Friends because it is supportive, helpful, amusing at times and is so good to be in contact with other people with a lot of chronic conditions! I look forward to helping support you.
The list of my medical problems is getting too long but fundamentally, I have had bad infections since aged 19, was diagnosed with immunedeficiency at 30. By this time I had had a lot of surgery and lung damage. I was physically fit and used to bounce back. On intravenous treatment, I had far fewer infections. Then I developed ulcerative colitis. I also have Hypermobile Ehlers danlos  syndrome, causing spinal problems, mast cell activation disorder, low blood pressure, gut and bladder problems.  In recent years, I have had sepsis which at the moment has left me fighting infection all over the place. I don’t know how I’m alive sometimes, but I am, and I do understand the stress of living with and trying to juggle health problems! I am medically retired but I teach two half days a week in term-time at the university (communication skills etc-communication is one of my passions).
As some people have out written down their mottos, I thought I’d tell you mine: “never get up with the lark, get up for a lark.” That might be English slang, so fundamentally it means I don’t like getting up in the morning, but I do like to look for something funny  in each day. I love going out for coffee, occasionally visiting an art gallery, and visiting family and friends when I can. Love animals too especially dogs and cats. My hobbies are painting, playing the flute and going to the theatre. I haven’t been able to do them for years but I haven’t give up hope. That’s my other motto…”never give up!” .

 

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Clare Rayner – ( UK Moderator)

 

If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join Medical Musings with Friends. Feel free to also share the link with any others you know who have a chronic illness and may benefit from a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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It’ OK To Take An Online Break

One of the wonderful things that has come from living with a chronic disease is finding new networks and friends in the chronic illness and blogging communities.

Before becoming disabled and unable to work, I had no idea about blogging and online support forums and believe it or not I never even had a Facebook account.

Fast forward to today and I am now fully entrenched in a whole new world of blogging network groups and online support groups, either as an active member or as an administrator/owner.

Not to forget Twitter accounts , Pinterest, Instagram and Facebook pages linked to my blog, my personal Facebook account, writing for The Mighty and other publications.

It’s A Full Time Job!

All of a sudden my sedentary, chronically diseased life, looks more like it did when I was working full time in an Executive Management role.

From morning ’til night I am involved in some way in one of these online activities. I love it. There is no denying that. I love sharing, learning and supporting. However, even when you enjoy something there is still the danger of overload and burnout.

I have to constantly rest my body because of my physical disability but what about my mind? Do I rest that enough?

I asked myself that question this morning  and very honestly answered, “No, I don’t”.

I wonder how many others in the chronic illness community who are bloggers/writers, administrators or active members of support groups, are feeling like their minds are just a little too full of chatter?

It’s Ok To Switch Off

As I “quietly “mused upon that question, clarity began to surface.

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It’s ok to switch off. It’s ok to have a “chronic illness” free day”.

In fact to do so will mean that you will add more value to conversations the following day. You’ll approach situations with better clarity.

It’s ok not to blog for a week or two.

It’s ok to step aside from forums that you perhaps feel are not right for you anymore or they have just served their purpose.

It’s ok to say “No” if asked to be involved in something new within the chronic illness community that would just over stretch you.

It’s ok to commit to one or two things solely and just give them your all. In fact it’s probably better to do that.

Switch off your phone, tablet, laptop. Listen to the quietness when you do that. Take a deep breath and just enjoy that moment when you let your mind rest from the social media world.

Ahhh…it’s so refreshing. Clarity is a wonderful thing.

Give Yourself Permission

I’m going to make some changes. I love my forum and that’s my number one priority. I do though need a day off once a week and I’m going to take it. No set day as I want the freedom to go with the flow a little, after all I’m medically retired so surely the regimented lifestyle should be a thing of the past.

I want more time to quietly write. Writing helps me relax. For me it is a reflective process but when there is too much filling my mind it’s hard to listen to any inspirational ideas that might be lurking in the recesses of my brain. Thinking  time is essential for clarity to emerge and writers block to be broken.

So I shall still happily emmerse myself in the chatter of the chronic illness networks and blogging communities that I love. However, I will now also be making every effort to ensure I take time out each week, to clear my mind and enjoy some clarity of thoughts.

If you are feeling like your blogging or online work is overwhelming you, I’d encourage you to switch off for a moment. Think about how you can better manage your time and involvement in social media activities and  networks.

Assess what’s working for you. Is it still relevant to your needs? Do you need to make changes? Is it adversely affecting your health?

“By the seventh day God had finished the work he had been doing; so on the seventh day he rested from all his work.”

Genesis 2 v 2 NIV

Give yourself permission to seek some quiet space. I’m so glad I have. It has been such a refreshing experience to have a reality check and make changes to how I manage my writing commitments, my blog and forum.

I still haven’t quite got my online/real life balanced yet but I’m on the right track and that’s got to be a good start.

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.

This post was shared at the Salt and Light Linkup Group

 

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 and the  Grace Girls Facebook Group

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“I Should, I Better, I Have To” …..No, You Really Don’t!!

How often do you tell yourself ” I should be doing such and such” or ” I’d better do this or that” ?

We all do it. It’s like we are programmed from birth to constantly have a catalogue of “should do, must do, better do”, all filed in the front of our minds for easy reach.

I’m as guilty as the next person. Even though my body can hardly do anything, I still give myself those messages. It’s ludicrous!!

Chronic Illness Comes With Chronic Restrictions

If diagnosed with a “Chronic illness” it means you have something that is ongoing. It’s life changing. It may be life changing to varying degrees for each of us but you can guarantee, in the majority of cases, how you used to live is no longer going to be possible.

Yet, despite this knowledge, we still allow ourselves to be drawn into a conversation with our healthy alter ego that goes something like this;

I’ll just do that extra load of washing today, come on, just push through”.

Oh I can easily have my friends visit for morning tea and squeeze in my blood tests in the afternoon. No worries at all”

When we were able-bodied and healthy, tiredness was probably the worst we had to contend with. That’s not the case anymore.

Chronic Illness comes with chronic restrictions. It’s as simple as that.

In the written form, that sentence sounds so logical and simple, but to change a life long behaviour of pushing through is incredibly difficult.

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Why Don’t We Just Listen To Our Bodies?

Listening to our bodies when chronically ill, means we need to accept we are not capable of doing what we used to do. No one wants to admit defeat. We all want to feel empowered, successful and free.

Ironically if we do accept our disease and the restraints it places on us, we will eventually feel that sense of control we are seeking.

While we continually give ourselves denial messages of ” just push through, I’ll be fine”, we are increasing the restraints our disease is trying to inflict. We are crippling our bodies more than necessary. Now that really doesn’t make much sense if you stop and think about it.

We end up in a vicious cycle of more pain, tiredness and other worsening symptoms. All of which remove more and more control over our daily lives.

So how can we help ourselves?

Our Bodies Key Messages

Our bodies give us key messages every day. Pain and fatigue are the two key indicators, in my opinion, we need to watch out for. When they present and begin to increase, it’s time to listen, stop, review and adjust.

Let’s look at each of those categories a little closer.

Listen

My pain is constant but it does have varying levels. I have base pain, intermediate pain and severe pain.

At my base level, I can function around the home doing a little cleaning, making cups of tea, doing admin work, writing and managing my forum. I can also go out for an hour for a coffee with my husband once during the week and I can more easily get to medical appointments etc. At this level I must have morning and afternoon lying flat on the bed sessions and I can’t be on my legs for longer than 30 mins at a time.

At my intermediate level, I need to reduce my cleaning tasks, avoid sitting at my computer to do admin tasks and increase my laying down sessions from 30 mins to 60 mins. I can still manage my forum and write while resting. I can only be on my legs for 10 mins at a time

At my severe pain level, I need to rest for the majority of the day. I can look after my basic hygiene, I might be able to write a little while resting but interacting and managing my forum is more difficult.

I have learned (the hard way) to listen to my body when it gives me the warning signs I’ve moved from basic, to intermediate, to my severe pain/disease activity level.

Stop

I’m sure most of us with Chronic Illness do listen to our bodies, but listening without taking some kind of action isn’t going to help us take control.

Stopping is the first action required. What I mean by stopping is just taking a little time to sit, so you can work out what’s going on and what you need to do about it.

A good stopping action is to put the kettle on and make a cup of tea or coffee.  Take a much needed breather.

Review

Once you’ve stopped for a moment and are sitting down sipping that relaxing cuppa, it’s time to review.

Ask yourself some key questions at this point.

  1. What just happened to make you stop?
  2. How did/do you feel?
  3. Are you overdoing it?
  4. Can you re-schedule your day?
  5. Is what you were doing really necessary? (Be very honest here)
  6. If you take a longer rest period will that help you recover quicker?
  7. Are your increase in symptoms due to overdoing it or do you need to seek medical advice?
  8. Are you telling yourself “I should be doing….”?
  9. Can you tell yourself “No, I shouldn’t” ?
  10. Do you want to feel more in control of your disease?

Adjust

We can listen, stop and review as much as we like but unless we adjust our activities nothing will change.

Once you’ve gone through the review process take action straight away based on your answers to the key questions.

I can almost guarantee, if you do you will feel immediate relief in terms of well-being. You will feel like you are back in the driver’s seat. Yes your disease has placed restrictions on you. Yes you are in pain or dealing with other kinds of symptoms but you have taken control.

By listening, stopping, reviewing and adjusting, you have improved your situation. In fact you have probably ensured that activities you want or need to do, later in the week, will actually have a good chance of happening.

Should You?…No, You Shouldn’t!

So next time you find yourself talking to your healthy alter ego and you hear the words, ” I Should, I Better, I Have to do it”, remember there is only one response.

It’s the response that puts you back in control. The response that is full of wisdom and will empower you. It’s the response that will ensure you will be successful in living well with your chronic illness.

The response to “I Have To Do…..” is simply, “No I Really Don’t”

Take care

Sam 💞

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

Please click here to read our Privacy Policy