Twists, Turns and Treading Water

Lying in an MRI machine last week 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 during this scan. My neck wasn’t scanned, but the radiologists had to protect my spine because of 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 wheelchair so I didn’t have to try to hobble in or out of the scanning room. I could be transferred from chair 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 category of having 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.

Twists and Turns

A few days later, I had an appointment with my orthopaedic specialist to get the results from the MRI and the Bone Scan I had two days after the MRI. It was a huge effort for me just to get through the appointments all so close together. We were seven hours at the hospital for the bone scan. They were supposed to just be looking at my lumbar spine, but something on my clavicle caught their attention, and the whole process was extended.

The MRI confirmed my lumbar spine is collapsed and basically broken from l3 to s1. My nerves are compressed in bundles. That’s the overview “layman’s” description.

There are spinal cysts and other bits and pieces. I need fusion surgery. However, we are still all concerned that the risks of infection in my case, or part of the fusion failing, is incredibly high.

At the moment, that decision has to be parked anyway as the first steps are to deal with a breast lump I found a week ago. I have an Ultrasound booked next week, then a PET/CT Scan two weeks later ordered by my Hematologist looking for Lymphoma, plus the intense hot spot shown on the bone scan on my collar bone definitely needs further investigation.

The PET/CT scan will check that out and the breast issue.

I also have to see my ENT as I have issues with my mouth, sinuses, and parotid glands.

Finally, I need to be fully assessed by the General Physician who I am supposed to see in April. He is trained to look at the whole picture and will determine or help us determine if we should even contemplate fusion surgery.

This is, however, a whole other story. I was under the impression I could see the general physician at my hospital. However, when I made the appointment, I was advised I have to see him at another hospital, which is impossible for me to attend due to the travel distance. We haven’t been there before, and not knowing how or if the disability facilities work is an issue. I’m just in too much pain not to stick to what works and what’s familiar.

I decided I needed to take some action about this situation, so I have written an email stating my case and asking if I could please be seen at my hospital. He has consulting rooms there. It’s just crazy if I can’t!!

It’s again a long road ahead, and it could take many twists and turns along the way, but at least we have a rough plan of attack for the next few months.

It’s not an ideal situation, but I’m at least in good hands overall.

Am I Making The Right Move?

There are times in my chronic illness adventure when I’m not sure what my next move should be.

Symptoms worsen, and 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 and often fails.

Living with a chronic disease is a little like playing a permanent game of chess. Always working on your next move and 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 eight specialists on my team are struggling, so let’s face it, another will result in more running around, more exhaustion, and more bewilderment. It’s not such a great move.

As a result, I have just reduced my team of eight specialists to a core team of four, and it’s such a relief.

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.

Treading Water

As a patient advocate, I am often called, inspiring, motivating, and full of strength despite my adversities.

While I want to be all those things in order to reach others and help them through their own inspiring, motivating, and incredible chronic illness journeys, the truth is most days I am just treading water.

I feel every inch of my daily pain. I look in the mirror, and my heart sinks at the reflection of the woman I used to be, let alone the woman I’d like to be now.

When we are treading water, we are not drowning. I think that’s an important point. Quite likely to the outside world, we look like we are managing very well.

When treading water your head is still above the ocean, and while a few waves may threaten to crash over, you are generally afloat. Others would have little idea of the struggle going on underneath the calm blue sea.

Your legs, however, are working incredibly hard to keep you afloat. The more you kick the more fatigued you become. To continue in this state will eventually lead to drowning if you don’t make changes to your circumstances.

You have to find a way to keep afloat.

So how can you do that with chronic illness when others are depending on you and when your health circumstances are unlikely to change?

I think getting back to basics is the starting point. It certainly is for me. Here’s what I mean by that:

• Be Honest With Yourself – it’s so important to acknowledge you’re just treading water. Do this privately or with a loved one or close friend. Talk about how you feel, or if you are on your own, journal your feelings with complete and unashamed honesty. This process is like a reset, and you’ll feel some of the stress just float away. Your legs won’t need to kick quite so hard while still treading water.
• Consider What Changes You Want and Can Make To Allow Life To Become Easier – you may decide you need professional help, or you may realise you just need a break from working, volunteering, advocating for a while. You might need to set realistic goals that are right for you at this stage in your life and take time to focus on your needs, not everyone elses.
• Be honest with others. Their response to the changes you are making and your truthful story you are sharing is up to them. They have a choice to embrace your honesty, but be mindful that some people will feel threatened by your newfound freedom and may not respond as you would have hoped. Your changed approach to life will be challenging in a world where everyone is eager to put their best foot forward.

These are three basic steps to get you from treading water to planting your feet on solid ground. You may feel a little shakey for a while, but you will hopefully feel more in control of your life. You should feel a sense of peace and relief as a load has begun to be lifted off your shoulders.

You really can never underestimate the power of sharing, of being honest, of taking positive action if you feel paralysed by your circumstances. Just small steps towards taking charge of how you need to live your life, for your well-being, is all that’s needed.

Before you know it, you will be inspiring and motivating others, even if you didn’t set out to, because you are being authentic.

Finding Peace in the Midst of the Battle

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.

I don’t have all the answers to my crazy health journey or anyone else’s. I do know that finding a sense of peace is so important, and peace isn’t a result of good health or money, or love.

The words of this beautiful hymn sum up what I’m talking about in terms of peace.

When peace like a river attendeth my way;
When sorrows like sea billows roll.
Whatever my lot, Thou has taught me to say;
It is well. It is well with my soul.

For me, my faith gives me an anchor and assurance that I don’t walk this journey of life alone. It helps me deal with the uncertainties of chronic illness. At the end of the day, I know I don’t have to worry too much about my next strategic move. I believe my life is in God’s hands, and He is always miles ahead of me in planning ways to deal with all its challenges.

I truly hope you also have, or find, ways to experience inner peace in the midst of the turmoil, as it may be our most important plan of attack against chronic illness.

Take care

Sam xx

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