“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 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

  • A White Christmas
  • 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!
  • An audience with Barak Obama

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, close to home, with my husband
  • 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 let’s go fly a kite!

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

 

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Dealing With Disease And Disappointments

Disappointments come to us all. They are part of life. As hard as they are to endure they can make the special moments in life seem even more precious. They also often teach us valuable life lessons.

Despite that knowledge, we still need to live through life’s disappointments. We need to find ways to survive them.

While no one is immune from disappointments, when you live with a chronic disease they can sometimes feel like the absolute last straw.

The Disappointment Scale

I’m not going to pretend I have any amazing solutions to dealing with disappointments. I have however, definitely had quite a bit of experience with my chronic illness creating chaos and unexpected life changing twists and turns.

I’m in the middle of a series of disappointing circumstances at the moment. Sometimes they seem like a gift that keeps on giving and not the welcome kind.

Disappointments tend to have a scale in my world.  They are either minor, moderate or major.

Let me give you an example of where my current disappointments sit on my scale;

  • Mild – Unable to help my husband decorate for Christmas because I’m recovering from back surgery.
  • Moderate – Unable to spend a lot of time with our family recently when they visited from interstate. Again because of recovering from spinal surgery and the pain of my bone disease.
  • Major – We have to sell our home in the New Year as my medical expenses continue to spiral due to my chronic illness.

Categorising disappointments does a couple of things.

Firstly, it identifies them which helps me understand why I might be feeling a bit melancholy.

Secondly, it helps me begin to work on a change of mindset in relation to my disappointments.

Thirdly, it creates a call to action, where needed, to begin embracing changes required.

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Turning Disappointments Into Opportunities

Now not all disappointments will become an opportunity for change in a physical sense.

They can be used to change how we think about a situation though and that provides opportunity for personal growth.

So here is how I’m approaching my 3 disappointments. Keep in mind I have to work at this and so will you with your own scenarios. You can’t just flick a switch and all disappointments will magically be gone.

So, my responses to each disappointment are:

  • Mild – I’m so grateful I have my husband to decorate. We are keeping it all simple this year so I can help him with a table top tree. I’ll be able to reach it without damaging my back or hindering surgery recovery. I keep reminding myself in the big scheme of things this is a very minor disappointment. I can let it go.
  • Moderate – I so wanted to spend more time with our family. It’s hard to shake this disappointment off. I need to hold onto the memories of the special times we did spend together. The love and laughter that filled our home when they visited still remains and when I think of that a huge smile fills my heart. Moments may be small but they can be full of so much quality and that’s what counts. Changing my mindset to one of thankfulness for those precious moments, does make a moderate looming disappointment become milder. That’s progress which is what matters when dealing with unavoidable disappointments.
  • Major – This one is not easy. I’m not super attached to the bricks and mortar of our home but the thought of physically moving is awful. I’m not opposed to renting, which is what we will need to do, but the thought of a lease not being renewed after 6 or 12 months and further moves ahead….it petrifies me. Physically I’m just not capable. My body needs security yet the irony is it’s my body that is forcing us into this situation. Ongoing medical bills, needing a low set home and space to move around with mobility equipment more easily, are all real needs that are creating this major disappointment.

Tackling A Major Disappointment Head On

I’ve looked at my major disappointment of needing to sell our home from every angle. If I analyse it any further I’m sure I’ll go mad!!

There is no other solution but to accept it. I will feel emotional pain with this disappointment. It’s a normal healthy response to a life changing decision, forced on my husband and I, due to chronic disease. It’s not easy to swallow.

But it’s not impossible.

Moving towards it little by little begins to make it my new reality. We’ve picked the listing month to put our home on the market. We’ve found an agent we like, trust and who will ensure my health and disability are accommodated throughout the selling process. We have a huge sense of relief about that.

We have a rough idea of where we will rent, the cost, the type of home and availability. We are praying we will find a landlord who is open to long term tenants.

Every now and again we think about buying another home but our budget doesn’t stretch to a house that accommodates our needs, so we have to accept that door is closed.

I must admit I keep peeking in the “closed door” just to make sure but I keep getting the same answer.

Acceptance Alongside Disappointment

As we begin to walk through our disappointment, by acknowledging it and looking at ways to deal with it, acceptance will come alongside and begin to provide clarity of thought and new direction.

It almost becomes a partnership. The hurt and disappointment eventually turns to the hope and opportunities that change can bring.

Chronic Illness will always bring us unexpected and unwanted packages. How we deal with these can make a difference to both our physical and mental well being. Allowing disappointments to linger for longer than necessary can so quickly drag us down.

If you are experiencing a season of disappointments I hope my “Disappointment Scale” of mild, moderate and major, helps you work through how best to approach life’s challenges.

Feel the pain, acknowledge the consequences of the disappointment and begin to look for ways to think differently about the situation. Where possible make plans to take action to implement necessary changes.

Disease may make disappointments more difficult but, with a change of mindset and a base plan, I so hope you find it’s not impossible to deal with them when they arise.

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

Please click here to read our Privacy Policy

This post was shared at the Salt and Light Linkup Group

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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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Healing Comes In Many Forms…..Even With A Broken Body

October 6th 2014. A day I will never forget.

It’s the day my femur broke.  (Click on the link to read about that extraordinary day)

It was a life changing day. A day that would start me on a journey with a rare bone disease, so rare that even Specialists would stand and scratch their heads at the craziness of it.

None of my medical team know why I have it, what caused it and none of us anticipated the aggressiveness of it.

All we know is my bones continue to get denser and my bone turnover is negligible. A combination that causes major bones, like my femurs, to snap in two as if I’d been in a major car crash. It causes my feet to fracture while doing nothing more than wiggling my toes in bed.

My spine is now affected with severe spinal lateral and central canal stenosis, compressing my spinal cord. My hips have avascular necrosis and both of these conditions have progressed from mild to severe in less than a year.

Other bones throughout my body throb with severe pain and cause functional disability.  I can’t keep having scans on every new threatening fracture or damage, so we wait until something breaks, or the pain from a new area severely impacts quality of life further.

Still Broken

Four years on and my left femur is still broken. It is official diagnosed as “non-union”. The bone disease will continue to prevent it from healing.

It’s almost become the least of my issues though as the disease has started to aggressively attack other areas of my body.

I’m used to my non-union femur. I know its pain, its restrictions, its abilities. It’s familiar. It’s become a part of me.

I’m the same with my foot fractures. They are familiar. I expect them. I know how to deal with them and I basically ignore them. If one becomes displaced I know to seek treatment but if they stay aligned, all is good. No one can do anything so there’s no point worrying.

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Healing Comes In Many Forms

When we think of healing, generally we think of getting better. We expect a person no longer has their disease.

Healing can absolutely come in that form and it’s something to be celebrated when it does.

What about diseases that have no cure and no treatment? As a Christian I believe God can heal and does completely heal some people of all kinds of diseases.

Why some and not others? I really don’t have the answer to that.

I do think healing can come in surprise packages. We sometimes miss out on seeing a miracle because we have an assumption as to what the miracle should look like.

Let me explain what I mean….hopefully I’ll make sense.

I’m not physically healed and I don’t think that I’m going to be. I do however believe that I have been given a very special gift of healing.

The ability or gift to accept my circumstances. I’m not weighed down by them. I’m happy, content and excited about the purpose I have in my life, despite my very limited physical abilities.

Isaiah 41:10 ESV “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand”

A Perfect Peacefulness

I have a peace that allows me freedom from anxiety. It doesn’t mean I don’t worry about things from time to time but I don’t get distressed. I’d describe any worries I have as cautious concerns. They are healthy and necessary in order to make balanced life decisions.

To me this is the greatest gift of healing given my disease. Stress and anxiety worsen pain. My body screams with pain 24 hours a day. If I wasn’t able to be at peace with my condition and remain free from unnecessary anxiety, I honestly would be in major trouble.

I absolutely thank God for giving me a “peace that passes all understanding”

Philippians 4:7 ESVAnd the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus”

If you’re feeling a little swamped by your life circumstances, your chronic illness and disabilities, take some time to pause.

Are you expecting complete healing? Are you so focused on being perfectly well you are at risk of missing out on the gift of healing in an unexpected way.

My disease has allowed me to connect with so many people from around the world, through my blog and my support forum. It’s allowed me to spend time writing and perusing this life long passion.

It’s allowed me to spend quality time with my husband who I absolutely adore.

Sure, it’s taken things from my life but even when we are healthy, life can take us in directions that require enormous sacrifices and loss.

Becoming Abled

If we can stop looking at our disease as “unfair” and “cruel” and stop thinking “why me”, our outlook can change.

“Why me” can become “why not me”. Sickness is a part of life. Accepting it as your new reality, can help change your disabled world into an abled world.

Peace brings clarity of thought. Peace is the opposite of war. If we stop fighting against ourselves by accepting our new life, warts and all, peace will come.

When peace comes an unexpected healing comes and that’s an amazing gift.

That’s a gift I pray you will also receive.

Take care

Sam xx

 

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

I’m 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

 

Please click here to read our Privacy Policy

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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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WEGO Health Award 2018 Nominee