There are times in my chronic illness adventure when I’m not sure what my next move should be.
Symptoms worsen, test results reveal disease progression and my energy and desire to fight wanes.
My medical team is very concerned but also cautious. Intervention can make things worse and every time I have surgery I’m never quite the same. Surgery depletes me further.
Your Next Move Is…
Living with a chronic disease is a little like playing a permanent game of chess. Always working on your next move. Wondering if a particular strategy will allow you to arrive at “checkmate”. Allow you to conquer the unconquerable!!
You wonder if perhaps a new Specialist will have the answer you are seeking. Of course all 8 Specialists on my team are struggling so let’s face it….another one will result in more running around, more exhaustion and more bewilderment. Not such a great move.
There are days of contemplating ignoring the disease. Pretend it doesn’t exist. Push through anyway. Now there’s an idea!!
Hmm….we all know how this approach ends. It’s not pretty and definitely not possible.
I could go on but my point is, the longer anyone lives with a progressive chronic disease, the shorter the list of options becomes.
Should I Wave The White Flag?
Lying in an MRI machine, for yet another scan on my lumbar spine, I wondered if it’s time to wave the white flag. Time to surrender. Time to just roll with the punches and see where that takes me.
I was placed in a neutral headrest this time. My neck wasn’t being scanned but the radiologists had to protect my spine because of my recent spinal surgery and the instability of my bones.
So no headphones and music possible, just the tap, tap, tapping and whirring of the MRI machine to lull me to sleep and interrupt my scattered thoughts.
Their care was exemplary. They wheeled the MRI scanner bed out to my walker so I didn’t have to try to hobble in or out of the scanning room. I could be transferred from walker to bed and wheeled directly into the MRI machine.
They discussed my history with me and the senior radiologist held my arm in a comforting way and just looked at me. No words passed between us. What can you say? He got the situation and he genuinely cared.
You can’t help but wonder when being scanned, if the answers will be helpful or unhelpful. Helpful falls into the categories of peace of mind knowing what’s wrong and possible treatment available.
Unhelpful categories, are problems identified but cause unknown and no treatment possible.
The trouble is my medical team can’t compare my case to another. There isn’t one like it. If I think about that for too long it’s incredibly scary. I simply don’t have “good days” anymore. I cannot get these high levels of bone pain under control.
I have “good moments”. Moments when pain meds take the edge off. Moments when resting on the bed is relaxing rather than excruciating. I hold on to those moments.
Good moments are better than nothing and I’m grateful for them. They provide hope in a hopeless situation.
Should I wave the white flag and surrender? My wiser self says, not just yet. I need my medical team. Complications from my disease can arise at any time and surrendering or retreating, would not be the best game plan.
Attack Is Sometimes The Best Option
I do think there are times when we need to take a medical rest. Times when appointments can be put on hold for a while and we can just focus on other aspects of life. It doesn’t mean the pain or disease symptoms are better, it just means it’s time to re group.
Time out can help bring clarity about next steps, which enables attack strategies to form.
So the “Chronic Illness Chess” game is a good mixture of attack and surrender.
This latest scan is part of my attack strategy. We need to know what’s going on with my lower spine post my recent spinal surgery. My Surgeon insisted on it.
My pain is escalating post surgery in my back and right leg. There could be an infection or another nerve root compressed. The situation is too dangerous not to take action.
Attack is sometimes the best and only option.
Will I ever arrive at checkmate? It’s unlikely. Not while I’m alive. More likely it will be a stalemate and the attacking/surrendering on the medical roundabout will continue to be a part of my chronic illness life.
Comforting The Soul Helps
There is a beautiful old hymn that always comforts my soul when I’m faced with chronic illness complications.
All the way my Savior leads me
What have I to ask beside?
Can I doubt His faithful mercies?
Who through life has been my guideHeavenly peace, divinest comfort
Ere by faith in Him to dwell
For I know whate’er fall me
Jesus doeth all things wellAll of the way my Savior leads me
And He cheers each winding path I tread
Gives me strength for every trial
And He feeds me with the living bread
And though my weary steps may falter
And my soul a-thirst may be
Gushing from a rock before me
Though a spirit joy I seeAnd all the way my Savior leads me
Oh, the fullness of His love
Perfect rest in me is promised
In my Father’s house above
When my spirit clothed immortal
Wings it’s flight through the realms of the day
This my song through endless ages
Jesus led me all the way
I don’t have all the answers to my crazy health journey or anyone else’s. I do know that peace isn’t a result of good health or money or love.
For me, it’s knowing I don’t walk this journey alone. It’s knowing all the way my Saviour leads me and at the end of the day I don’t have to worry too much about my next strategic moves. I believe they are in God’s hands and He is always miles ahead of me in planning ways to deal with life’s challenges.
How comforting, hope returns!
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