“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

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Finding Your Way Through A Chronic Illness Conundrum

You know that feeling when you are completing a jigsaw puzzle only to find that a piece is missing?

It’s a devastating moment. Your stomach turns just a little. All that work, all that effort, all that anticipation of a final outcome. A completed picture was the awaiting reward but it’s been snatched away from you!

Trying To Fit The Pieces Of The Puzzle Together

Chronic and complex illness is so often like that. We are given a diagnosis, then another, then another and for some the list continues to grow with every medical appointment. Our medical team work with us to try to put the pieces of the jigsaw together.

Good progress is made. The puzzle pieces start to fit together. Treatment plans are made. Great anticipation builds in the hope that symptoms may reduce, even if a cure is out of reach.

A feeling of calm returns as you are in the driver’s seat navigating the road ahead. Nothing can stop you now.

Nothing except a missing piece of the puzzle.

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A chronic illness conundrum.

A change in symptoms,  a new symptom, a worsening of symptoms.

A knowing feeling that something is not right. A knot begins to form and tighten in your stomach.

Just like finishing that jigsaw puzzle only to find a missing piece.

The Gift That Keeps On Giving

Living with chronic disease is often referred to as the “gift that keeps on giving”. Labelling it a gift is a stretch at best but it definitely will keep you on your toes.

I recently had a worsening of symptoms and new symptoms. My conundrum was, do I “watch and wait”? Do I make an appointment to see my GP or one of my Specialists? Do I go to the ER?

It’s a chronic conundrum faced by so many in the chronic illness community. It’s the thing we most dread. We want to keep things moving on an even keel.

We don’t want to face conundrums, neither do we want to be a conundrum to our Dr or our family and friends.

We would love to focus on something other than our chronic health but when it’s all encompassing and ever giving, we can’t escape.

The reality is we will often be in this position so we need to find ways to cope.

I don’t have all the answers. I often don’t have any answers but I do like to problem solve and find a way forward.

Finding A Way Out Of The Conundrum

Finding a way through my new chronic conundrum will restore peace and instil a sense of hope. That’s my goal. Staying peaceful and organised is one of my major pain management tools. It’s critically important!

So, as I do, I made a plan and took action to deal with the latest puzzle my body threw at me. With my recent conundrum, I assessed that going to ER would be too much of an ordeal, I determined to let my Specialist team decide what’s best.

Here’s what my very simple but effective plan looked like:

  1. Stay calm – I did this by writing and planning. Works for me! (Find what works for you. You can’t plan effectively without calming yourself a little first.)
  2. Make an appointment with my GP to deal with some minor general health symptoms;
  3. Email my Orthopaedic Surgeon explaining my new worrying bone disease symptoms and worsening existing symptoms;
  4. Send a copy of the email to my Endocrinologist;
  5. Don’t change anything to my current treatment plan until I’ve spoken to my medical team;
  6. Prioritise all necessary tasks, cancel all unnecessary tasks, appointments etc;
  7. Rest….Do something relaxing, knowing that while I haven’t solved the conundrum, I’m back on track and heading in the right direction.

Within a day my plan began to produce a positive outcome. An urgent MRI was ordered. It was assessed quickly and I was advised I do indeed have a worsening of my bone disease. My spine issues required a Spinal Surgeon/Specialist to be added to my medical team. A referral and appointment time were quickly arranged.

A Light At The End Of The Tunnel

While my planning didn’t provide an immediate solution to my new conundrum, it produced an outcome and a new action plan evolved.

There was progress and that felt so good.

Having an effective plan doesn’t mean the outcome will be good news, but it does mean I’m going to find out what’s going on with my crazy body.

It does mean I feel less alone in battling through a whole new level of excruciating pain. I have new people, the right people, on my team now working with me to find that elusive piece of my current puzzle.

I can see a little light at the end of the tunnel.

Maybe, just maybe, the missing piece of this jigsaw will be found.

Until the next chronic illness conundrum, when I will start this process all over again.

Take care

Sam xx

“But as for you, be strong and do not give up, for your work will be rewarded.” 2 Chronicles 15 v 7 (NIV)

 

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

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“Where There’s A Will There’s A Way”….Is It Really That Easy?

I was loading my dishwasher this morning and fighting with a plate that refused to fit in.

It wasn’t really the plates fault. I was in severe pain and trying to get the task over as quickly as possible. I was also trying to fit way too much into this particular load…..as you do!!

So as I continued to engage in one to one combat with my dishwasher, I loudly exclaimed, “Come on, where there’s a will there’s a way”.

My renewed determination actually worked and with a quick reshuffle of a few bowls, my plate finally found its resting place. Phew! Door closed, button pushed, all done.

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Is It Really That Easy?

As I returned to my armchair to rest and recover from my efforts, I began thinking about the old English proverb I’d just used to spur myself on to success.

“Where There’s A Will There’s A Way”

It just rolls off the tongue so easily doesn’t it. I have always lived my life with a “mind over matter” type approach. I’ve always believed that if I was determined to achieve a particular goal, I could find a way to do it.

Generally I could. Not anymore. Not like I used to. Life isn’t as easy now.

Chronic Illness changes everything. No amount of mind over matter or old English Proverbs, cheering me on to achieve absolutely anything, is going to cut it.

Does That Mean I Should Give Up Trying?

Chronic Illness does significantly impact most areas of our lives, there is no denying that.

So should we just give up trying to set goals? Should we put up an “out-of-order” sign and let life pass us by?

No, I don’t think we should. I do think we need to be realistic though about our new capabilities.

I could set a goal of running up a mountain but that would be ridiculous. I’d be setting myself up for failure. My non-union broken femurs are obstacles to that goal that won’t be removed by simply spouting, “where there’s a will there’s a way”.

Even if I searched for a way by perhaps being pushed up the hill in a wheelchair, I would still be setting myself up for failure. I can barely sit in a motorised wheelchair for more than 10 mins on a smooth surface.

Inflammation quickly builds around my broken bones and pain sears as bone on bone begins to rub. My feet fracture just looking at them and I’m not exaggerating.

No, that is not a goal I can achieve no matter how many times I stoically shout “where there’s a will there’s a way”!

So What Is Achievable?

Realistic goals are achievable. There may even be goals that require us to stretch our limits a little and that’s ok.

Let me give you an example. I had a goal today to write a blog post. I am absolutely exhausted, pain is soaring (the dishwasher incident didn’t help) and I have a new foot fracture. I’ve just been diagnosed with a compressed spinal cord at L4 as a result of my rare bone disease progressing.

The compression is on the right side and is a result of a central canal stenosis and a lesion on the right side facet joint. The pain is excruciating and I have a whole new journey to travel in relation to this diagnosis.

So, you get the picture. It’s a tough day. No one is going to care if I don’t write my blog post. I could leave it until next week. It doesn’t really matter.

It does matter though. It matters to me and that’s the key.

When we set goals they need to be achievable but they also need to be something we are passionate about. Something that drives us to want to achieve them.

Those who know me well and follow my blog, know I’m passionate about writing. It’s what I do now. It’s how I connect with others. It’s one of the major activities I use to keep the one part of me that still works active…my brain.

Finding A Way

To achieve my goal of writing this blog, I had to find a way.

Firstly, I had to mentally commit. To do that required me to push aside my first thoughts that crowded my mind. Those were the thoughts that were telling me to just leave it until next week.

I did consider that option. It was a valid option but as I thought about next week, I knew I had other goals I needed to achieve, so it soon became a non-option. That was a positive thought process as it forced me to think about strategies to achieve my goal today.

I determined I did need to find a way to achieve this goal as I knew, aside from any other reasons, it would be a great distraction from my pain.

So I made a 4 step plan:

  1. Take my afternoon pain meds;
  2. Wait for an hour so they kick in;
  3. Write while lying down on my bed, using my phone. (I’ve taught myself to blog on my phone rather than using my tablet or PC. It has removed so many of my writing obstacles).
  4. Take my time and enjoy the process.

Maybe Where There’s A Will, There Is A Way Afterall

If you’re reading this you’ll know I did it! I achieved my goal. My determination, commitment and planning, was rewarded as I persevered and was able to hit the publish button.

So maybe the old English proverb does have some truth to it.

When it comes to chronic illness we definitely need to ensure we are not setting ourselves up for disappointment. Our diseases cause us enough stress and sorrow without us deliberately adding to it by trying to achieve things which are definitely out of our reach.

Don’t let that put you off setting goals though. It’s so important that we feel that sense of achievement. We might be chronically ill but life needn’t completely pass us by.

Find something you are passionate about and set a realistic goal. Or maybe it’s something that needs doing, you have the ability to do, but you’re  dreading it. The same principles apply.

Using the word “Simple”, I’ve created an easy to remember planning outline. I hope it will help you achieve goals that might seem out of reach right now.

S.I.M.P.L.E

S – Set a timeframe

I – Improvise where necessary

M- Modify your plan if you meet a roadblock 

P – Picture the final outcome as you work

L – Listen to your body if you need a rest

E – Enjoy the process.

Keep your goal simple, keep it relevant to your abilities. Before long you could be discovering, despite chronic illness, where there’s a will, there might be a way.

Take care

Sam xx

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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

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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

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Living A “Simply Special” Life

Living with chronic and disabling disease requires a complete change of lifestyle, a complete change of thinking.

Gone are the days of waking up in the morning and jumping out of bed to have a quick breakfast, get showered and dressed, head to work or some fun planned day full of anticipated activities.

Losses are real and at times incredibly hard to come to terms with. There is no denying that.

However, chronic illness and disability doesn’t have to be the end of the world.

Those old halcyon days can be replaced with a different kind of lifestyle. A more simpler, easier and less planned approach.

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A New Kind Of Special…Simply Special

A life with severe chronic disease can still be full of happy, special days and activities. They just need to be “Simply Special”

Over the past four years my life, on a physical level, has become more and more disabled. Even so my joy, my purpose and my love of life has actually increased as each year has passed.

A new life has gradually evolved and I honestly am at the point where I can’t imagine living any other way than how I do now.

I value everything. Every moment, every conversation and interaction is special.

Instead of fighting to hold onto my old life, I’m using my limited energy, my talents and anything I can muster, to carve a new manageable lifestyle. It’s unique to my needs but it’s perfectly formed.

My failing body can dictate a lot in terms of limiting physical activities but it doesn’t have to dictate my happiness.

I’m living, I’m alive and I count that as an enormous blessing. It’s a blessing I don’t want to squander in self-pity or in a state of permanent grief or denial.

Looking For The Light At The End Of The Tunnel

Don’t get me wrong…..chronic illness is hard work and it will seek to take as much as it possibly can as it relentlessly attacks. We can easily find ourselves in a black hole that has no light at the end of the tunnel.

There is a light though. As a Christian I have my faith and that helps enormously but it doesn’t exempt me from feeling despair. I have those moments. I’ve lived through horrible mental battles that have made me question how I can possibly face day after day with my disease.

The thought that has always got me through is;

“I’m still alive…there must be a reason for that”.

The day my femur broke I was told it was a miracle that my femoral artery wasn’t severed. Apparently the way it broke it was so close to the artery, I was so close to death. I had no idea….thankgoodness!

I can’t take this life for granted. It’s a gift, even if it is in a crippled state.

A simple life it may be but it’s a “Simply Special” life and I love it.

A Few Of My “Simply Special” Things

I enjoy pottering around my home and cleaning in a super paced way. It takes me all week to get through the weekly tasks but I feel a huge sense of achievement. Yes it hurts but the pain isn’t going to kill me. Not trying to move my crippled body might, so for as long as I possibly can I’m going to keep up my simple pottering.

I enjoy watching TV in an entirely different way. I really listen to the words spoken, I follow the plot and I analyse the script writing and the scenery. I love documentaries about nature. I never used to watch them in my past life. I love travel shows that are not about advertising holidays but about travel through countries with amazing culture and history through the eyes of adventurers. I soak it up.

I’ve always loved learning. Something will spark my attention and I now have time to research topics of interest and really learn about them in depth.

It’s no secret that I love writing. I’ve always written in a journal but now I can indulge in blogging and writing articles whenever I feel inspired. As a result of my blog and online support forum I have connected with people from all around the world.

I enjoy listening to music every day. I can play music while I’m getting dressed and can take as much time as I like (just as well as it’s a slow process). I have learned to savour this time everyday.

These are a few of my favourite things. There are more and they are all “Simply Special”

Where Did That Week Go?

My life is full and my days speed by in a blink of an eye. I’m never bored and mostly I feel like I need an extra day in the week.

So gone are my days of physically running around but those days are well and truly replaced with “Simply Special” things that I can manage lying on my bed or sitting in my lounge room. They can be done at 2pm in the afternoon or 8pm at night. It doesn’t matter. They are not agenda or time driven.

If you have found yourself severely disabled by your chronic illness and are still trying to live a semblance of your “healthy days” life……. STOP!!

Stop what you are doing and think about how you can find joy in “Simply Special” things.

They might be activities that are very different to mine but they will be unique to you. They need to be special to you.

I hope you can find joy and purpose in a “Simply Special” life. It might take time but it can happen despite chronic disease.

Don’t lose hope💗

Take care

Sam xx

“A pretentious, showy life is an empty life; a plain and simple life is a full life.”

Proverbs 13v7 (The MSG)

 

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 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

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It’s Never As Easy As……

How many times have you said, “No worries, that’s as easy as…….”

I know I’ve said it countless times during my life. In fact that’s how I used to live my life. Everything was seemingly easy and if it wasn’t I could quickly convince myself it was.

I had a positive can do, absolutely, yes to everything, kind of attitude to life.

I still have that attitude but my chronically ill, crumbling and disabled body, really does struggle to get with the agenda.

A Gradual Awakening

I feel blessed my change in life circumstances have gradually evolved. Many are faced with a drastic and life altering diagnosis in the blink of an eye. A serious accident or a terminal illness can so quickly turn life on its head.

My gradual awakening, while a blessing, has not been without its challenges. I suffer from fatigue due to my bone disease pain and autoimmune diseases but in general my brain manages to stay alert and functioning. At least I’m telling myself that at this stage!

The downfall of an active and alert brain, is the message “it’s not as easy as….”, fails to get through.

My brain still has a lifelong program installed, playing the opposite message, “you can do that,  it’s as easy as……”.

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Point In Case

Now I’m not completely stupid. I do know that my disabilities limit me severely. My regular readers will know I have made mountainous changes to the way I live my life.

Where I still trip up, is thinking that something as simple as packing a day bag for day surgery, will take me half an hour.

Ha…..how wrong could I be?

So here’s how that little exercise went;

  1. Got hospital day/overnight bag out of cupboard.
  2. Another bag fell on my foot…..oops a new stress fracture!
  3. Finally opened the bag (after trying to stand on my legs) to find that it was full of things I didn’t need.
  4. Emptied bag and gave surplus to requirement items to my husband. He had come to my rescue following the foot crisis.
  5. Realised that some of the things I thought were in the bag were not.
  6. Climbed on my stairlift for an unwanted trip upstairs.
  7. Gathered required items and headed back downstairs on the stairlift.
  8. Packed my pills ( you really don’t want to know or ask about that saga!)
  9. Realised I needed a few items from the shop and some prescriptions required refilling.
  10. Husband headed out to chemist, leaving me with firm instructions to sit and rest.
  11. I actually listened to his advice as I was in agony and I waited!
  12. Husband came home and I finished packing the remaining “normal” items.
  13. I say normal as next I needed to work out what I wanted to take in terms of my stoma supplies.
  14. I decided to pack each stoma change in a zip lock bag. This system works incredibly well when I’m trying to deal with bag changes and broken legs/feet. It does take time to pull together but worth the extra effort.
  15. Husband decided to tell me I perhaps should pack a little more in case they keep me in overnight. Thanks for that thought! Unfortunately with my medical history, experience tells us its a possibility.
  16. Extra packing gets underway.
  17. The whole process was spread over 4 hours!!
  18. Later that night, we were lying in bed just about to go to sleep, when I remembered I forgot to pack a spare set of underwear!
  19. Hubby got out of bed to put the items on top of the dresser so I’d see them in the morning. At this point we decided we’d completely had enough of this day/overnight bag shenanigans.
  20. Thankfully I still had 2 days to recover before my surgery!!

The Moral Of The Story

There is a moral to this story. It can probably be best summed up as;

With Chronic Illness it is never “as easy as!”

So many clichés spring to mind but I promise I will spare you those.

Basically we need to allow plenty of time to prepare for any lengthy event. Be that a holiday, surgery, a day visit to family or friends.

We can’t just think all will be ok on the day. We can’t just assume a task will take us 30 minutes like it did when we were healthy.

If we do we will set ourselves up for failure. Stress, anxiety, extra pain and fatigue and possibly not even making the event, are likely outcomes of not getting sorted days in advance.

My rule of thumb is, where possible, always allow 2 days minimum to recover from packing/preparing for an event.

We can’t guarantee how we will be on the day of the event, as Chronic Illness doesn’t like to play fair.

By being well prepared we can at least guarantee we will feel better, knowing whatever the outcome, we didn’t deliberately sabotage ourselves by leaving things to the last minute.

It’s never as easy as, but it’s not impossible with a lot of preparation”

Take care

Sam xx

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

I’m a 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

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Dealing With The “Great Expectations” of A Medical Appointment

It happens to all of us with chronic illness. We look at our calendar and see that appointment date sitting there. Looming in the future. It offers such promise. We feel a little excited at the prospect of what may come from it.

Hope. It offers hope.

It’s still 4 or 6 weeks away but it is indelibly printed on our mind. It’s like we have a post it note stuck to our forehead, which of course only we can see!

So Many Scenarios

If you are anything like me, you’ll probably think of many different scenarios of what could happen in this looming appointment. So many you could write a novel!

As you close your eyes to sleep at night, those scenarios will begin to play out in high definition colour.

Each scenario has its own unique outcome;

  • We have a cure – the ultimate outcome.
  • We have a new medication to take away all pain – I’d be very happy with that.
  • We can run more tests to see what else is going on – hmmm…that could be interesting!
  • We need to do more surgery – Noooo!!!!
  • We can’t do surgery – Thank goodness!
  • I need to refer you – Oh No, not another Specialist.
  • We need to admit you to hospital to stabilise you – I’m so over being in hospital, let me out of here!
  • We can’t do anything more, no cure, no treatment, we are sorry – Me too!

The Day Before The Big Event

The anticipation and excitement of thinking about your upcoming appointment, starts to fade a little the day before.

Nerves set in and the reality dawns on you that you have to physically get there. That’s hard work. You’re chronically ill and in pain. Going anywhere is difficult. Sitting in Specialist waiting rooms is not an ideal past time.

Random thought: Why are their chairs so uncomfortable and so unsuitable for the chronically ill?

The Big Day Arrives

You thought the day would never come but before you know it’s here.

You know you need to push through physically to get there. You have your own military style precision plan to get from your home to your Drs office. You just have to do it!

You make it there, sometimes with adventures you could do without along the way. It doesn’t matter though, what matters now is finding out which scenario will play out.

You have your notes, your questions, you’re ready.

No turning back now. Hope remains.

“Rejoicing in hope, patient in tribulation, continuing steadfastly in prayer.” Romans 12 v 12

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The Main Event

Months, weeks and days have been spent thinking about and planning for this one appointment. All that effort and it will soon be over before you know it!

If it’s a new Specialist you may get allocated 45 minutes (plus a lovely account to pay). If it’s a Specialist already on your team, 15 or 30 minutes is about the norm.

You get out your list eager to tick off every last item. In my experience points one and two on said list often open up a conversation which make points three to ten vanish into thin air. Sometimes those points are covered off during the discussion. That’s a bonus!

Your mind is quickly trying to take in the scenario the Specialist is placing before you. Is it your worst case or best case scenario? Hmm….you’ll have to think about that later.

You can feel the appointment coming to an end so you look at your phone again, just to check you’ve covered all items on your list.

Your Specialist stands up. It’s over! Time to go.

All that anticipation, all that thought, all that planning.

It’s not over though really. There is still the aftermath to come.

The Aftermath

Sometimes the aftermath is a positive experience. Your expectations were met. You have a care plan put in place. You have a follow-up appointment in a few months or maybe sooner. You leave with an exhilarated feeling and want to celebrate. Love those appointments!

Sometimes the aftermath is a world of pain. I’m not talking about a situation where your Specialist was unkind or uncaring. I know that can happen and it breaks my heart to read of those experiences.

For the purposes of this blog post, all Specialists are really good at what they do and genuinely care.

I’m talking about a situation where the scenario that played out was one of your worst case scenarios. Perhaps you were told ” I’m sorry, there is nothing more we can do but provide ongoing support”.

That kind of scenario needs time to process. Grief and all the wonderful stages that come with that process, begin to wash over you.

It is perhaps a turning point in your life, a crossroads. Changes you thought were way in the future might now need to be considered in the present.

Hope begins to fade!

Dealing with the “Great Expectations” Let Down

So what next? I could say dust yourself off and get on with it but we all know it’s not as easy as that.

For one thing you have invested so much emotionally in the lead up to the appointment, the let down of a worst case scenario hits incredibly hard.

So what can you do post appointment? I have a few ideas that may help with finding the positives in what seems like the end of the world right now;

  • Talk to someone you trust; your partner, a friend or family member or post on a closed support forum where you feel safe.
  • Don’t make rash decisions.
  • Sleep on it. Often the worst case scenario won’t seem quite as devastating the next day.
  • In the morning make a list of what was actually said at the appointment. Writing it down makes it real and helps you to digest it.
  • Next to each discussion point create an action item. For example, your Specialist may have said a Pain Management Course might be helpful. If that’s the case your action item might include;
    • Research online courses
    • Make an appointment with my GP to discuss a referral to a Pain Management Specialist
    • Ask others on support groups for recommendations
  • Keep working your way through the list until you have an action plan that is achievable and that helps give you some control over your situation.
  • Let hope return. The action plan will give you renewed purpose. When we remain in what we think is a hopeless situation, we can make a worst case scenario even harder to deal with.
  • Surround yourself with positive friends both online and in person. While you want empathy after a difficult appointment, you don’t need people who will fill you with stories that will just further lead you down a path of despair. You need understanding, support and encouragement.

Take Time Out

Sometimes the best thing to do when our “Great Expectations” have been dashed, is just to take time out.

Depending on your level of disability, maybe a mini holiday to relax or a shopping trip to indulge in a treat. Perhaps lunch or dinner with your partner or close friend somewhere with a beautiful outlook, or a drive in the country.

If like me your disability renders you housebound, there are still options. A bit of online shopping, watching a good movie while indulging with your favourite chocolate cake.

It really doesn’t matter what you choose to do, it just needs to be something non-medical that makes you feel alive.

Specialist appointments are par for the course with chronic illness. We need to develop coping strategies to help us through the difficult ones, as you can guarantee they will happen.

If you have a medical appointment looming that you have been thinking about for months or weeks, creating numerous scenarios, take a step back. Think about what strategy you will have in place if your “Great Expectations” don’t come to fruition.

Being prepared might just help you engage better in the appointment and it will certainly help you cope better in the aftermath.

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

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WEGO Health Award 2018 Nominee

This post was shared at the Salt and Light Linkup Group