You know the feeling of completing a jigsaw puzzle only to find a piece is missing?
It’s a devastating moment. Your stomach turns just a little. So much work, so much effort. So much anticipation of revealing a beautiful picture and this awaiting reward has been snatched away from you!
Chronic and complex illness is so often like this. We are given a diagnosis, then another, then another and for some the list continues to grow with every medical appointment. Our medical team try hard to 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 symptoms may reduce, even if a cure is out of reach.
A feeling of calm returns as you seem to be in the driver’s seat navigating the road ahead. Nothing can stop you now.
Nothing except a missing piece of the puzzle.
A change in symptoms, a new symptom, a worsening of symptoms can all throw the almost completed picture into disarray.
A knowing feeling something is not right begins to stir. A knot begins to form and tighten in your stomach.
Just like finishing a jigsaw puzzle only to find a missing piece, your heart sinks.
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, aside from anything else, it definitely will keep you on your toes.
I recently had a worsening of symptoms and new symptoms. My dilemma 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 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 medical team, 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 often can’t escape.
The reality is we will regularly find ourselves in this unsettling 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 attempt to find a way forward.
Looking For The Missing Piece Of The Puzzle
If I can take some action to search for a reason for my disease flare or new symptom, I’ll have some hope of restoring a sense of peace. Staying peaceful and organised is one of my major pain management tools. It’s critically important to me!
So, I make a plan and take action to deal with any new puzzle my body throws at me.
With my recent disease conundrum, I assessed 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 effective plan looked like:
- 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.)
- Make an appointment with my GP to deal with some minor general health symptoms;
- Email my Spinal Orthopaedic Specialist explaining my new concerning bone disease symptoms and worsening existing symptoms;
- Send a copy of the email to others on my Specialist team;
- Don’t change anything to my current treatment plan until I’ve spoken to my medical team;
- Prioritise all necessary tasks, cancel all unnecessary tasks, appointments etc;
- Rest….Do something relaxing, knowing while I haven’t solved the issue yet, or found the missing puzzle piece, I’m back on track and heading in the right direction.
Within a day my plan began to produce a positive outcome. An urgent phone appointment was made. Tests were reviewed and my Orthopaedic Spinal Specialist worked with me to determine next steps, which included referrals to other Specialists now required on my team.
A Light At The End Of The Tunnel
While my planning didn’t provide an immediate solution to my new conundrum, it did produce an outcome and a new action plan evolved.
Having an effective plan doesn’t mean the outcome will be good news. It does mean I have some hope of gaining further insight of what my overall disease jigsaw puzzle looks like.
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, working with me to find the 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 latest jigsaw puzzle can be found.
Never lose hope!
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.
If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam