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.

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 Spinal 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 appointment was made. Tests were reviewed and my Spinal Surgeon advised I do indeed have a worsening of my bone disease and my recent spinal surgery had failed. Two failed surgeries indicate a third attempt is unlikely to solve the aggressive progression of my bone disease.

As soon as my Surgeon removes the excess bone growth compressing my spinal cord, it grows back again, each time with more fury it would seem.

So we are considering Radiofrequency Neurotomy, but first he gave me a referral for a facet joint injection for diagnostic purposes.

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

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