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 and 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 condundrm.

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 defintiely will keep you on your toes.

I have a worsening of symptoms and new symptoms. My condundrum has been, 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 condundrums, neither do we want to be a conundrum to our Drs 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 I’ve taken action to deal with this latest puzzle. Having assessed that going to ER at this stage would be too much of an ordeal, I determined to let my Specialist team decide what’s best.

Here’s my very simple but effective plan:

  1. Stay calm – I’m do 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 necesssary 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 postive outcome. An urgent MRI was ordered. It was assessed quickly and I do indeed have a worsening of my bone disease. My spine requires a Spinal Surgeon/Specialist to be added to my medical team. A referral and appointment time are being arranged.

A Light At The End Of The Tunnel

While my planning is yet to provide a solution to my new conundrum, it has produced an outcome and a new action plan has evolved.

That’s progress and that feels good.

It 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 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 condundrum, 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

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

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WEGO Health Award 2018 Nominee

 

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