I thought my body couldn’t possibly surprise me anymore. I thought I had a good handle on the reality of my diseases and on so many levels I do!

I wrote a blog post recently, called “Sending The What Ifs Of Life Packing”

It’s all about focusing on “What Is” rather than “What If”.

So how do new health” chapters sneak up on me when I’m so aware of “What is” in my life?

A False Sense of Security

When you’ve been living with chronic illness for a while, I’ve realised it’s easy to be lulled into a false sense of security and familiarity with symptoms and diagnoses.

I’ve made so many huge changes to my life including;

• medically retiring,
• selling our home recently and moving into a lifestyle village,
• utilising all kinds of mobility aids,
• being approved for a top level Home Care Package (inclusive of permanent residential care if/when I get to that stage).

My list could go on and on but you get the picture.

These are all things indicative of the fact I have serious, debilitating, progressive health issues. I know that. I accept that.

So why do new “What Is” health events hit so hard?

Just Because You Understand, Doesn’t Mean It’s Always Easy

The simple answer is, I’m generally not looking for them. I certainly don’t want anything new added to my chronic illness list.

I have always been aware my bone disease is progressive but there were factors of it I had forgotten.

I forgot I have a condition called Myositis Ossificans. In layman’s terms I have bone growing in my muscles, particularly my thigh muscles. It is excruciatingly painful and debilitating.

I recently found out I also have bone growing in my Ligamentum flavum. This is the ligament which runs the entire length of the spine.

I forgot I have calcified tendonitis in my right hip.

I forgot I have Avascular Necrosis in my hips. Basically my hip bones are breaking down.

I often forget I have Rheumatoid Arthritis and Sjogrens Disease, as my Rare Bone Disease is so consuming.

I knew I had Gastritis and it was getting worse, but late 2018 I received a surprise diagnosis from my Gastroenterologist of Gastroparesis. Very basically it’s a condition that affects the stomach muscles and nerves and prevents proper stomach emptying.

I forgot I had Trigeminal Neuralgia until a Dental visit caused a sudden painful flare of this horrid condition.

I’m trying to forget I have a tongue tumour (albeit benign) which flares with pain when I least expect it.

As my regular readers will know I’ve had two rounds of lumbar spinal surgery, due to my bone disease attacking my spine. It’s causing severe spinal stenosis. It seems it won’t give up. I’m back on that merry go round of it collapsing in a new way and crippling me again.

I asked my Specialist if there was anything I could do to make my current and extreme spinal pain better and his immediate response was:

“No, there is something extremely wrong with your spine”

He then showed me my recent CT scans which reveal a “clump” of something next to the L4 facet joint on the left side. It shouldn’t be there, he doesn’t know what it is and he is very concerned. So much so, he wrote a referral to his colleague and sent me off for a second opinion and more scans. It’s causing severe spinal stenosis and basically crippling me.

Breathe In, Breathe Out

As I lay on my stomach in a CT machine late last year, waiting for the Radiology Dr to inject my L4/L5 facet joint on both sides, all I could think is, “here we go again”.

My spine was continuing to collapse in spectacular fashion back then and neither my Spinal Surgeon or I could keep up with it. We still can’t!

Lying on my stomach reminded me of my stoma and why I can no longer lie this way. It reminded me how both femurs are broken and have rods in them. Turning onto my stomach with a diseased spine and broken legs, not to mention broken feet, took a super human effort.

” Breathe in, breathe out! Breathe in, breathe out! You’ve got this. Breathe in, breathe out! You’ve got this. “

My little mantra slowed down my breathing as I lay in agony. I then began to quietly pray for strength and peace. Before I knew it I was being jabbed with needles. I’d actually fallen asleep! A little miracle needed to get me through the 30 minutes.

I’ll Have Fries With That!

With Gastritis and Gastroparesis, fries are the last thing I’ll be having, but that catch-phrase sums up perfectly what life is like when dealing with Chronic Illness.

Our primary diseases rarely come on their own. There are usually a selection of side dishes including syndromes, conditions, side effects and related diseases that cause complications and often confusion.

Most of these have a habit of sneaking up on you when you least expect it. Before you know it you are wondering what happened. Why are you suddenly so much worse than you were? Why has this happened so quickly?

Keep Reviewing The “What Is”

We can’t afford to become complacent. We can’t afford to think that we won’t take a turn for the worse or we won’t progress.

That’s not being pessimistic, it’s being realistic. It’s so important to not stick our heads in the sand when it comes to progressive or relapsing/remitting chronic illness.

So what can we do to keep one step ahead of our diseased bodies?

Surprise, surprise, I do have a few tips.

1. Keep a symptom diary. If a new symptom occurs or an existing one worsens, I have a 4 day rule (unless it’s clearly an emergency and I need to go to ER). If my symptoms are worrying or still severe after 4 days, I call the appropriate Specialist or see my GP.
2. Know Your Primary Disease Prognosis. It can be very easy to be given a diagnosis and be so pleased to know that you are dealing with something with a name, you actually forget to fully research what the disease means in terms of practical living. What changes to your life do you need to make? Is it a progressive disease? What symptoms should you be concerned about? What symptoms are to be expected?
3. Know Your Disease Side Dishes? What can you expect in terms of related syndromes, conditions and medication side effects. These can be as debilitating, if not more so, than your primary disease.
4. Don’t Delay Making Adjustments. What changes can you be ready to make if your disease progresses or relapses. Once it’s clear your disease is progressing or relapsing, don’t hesitate to make these pre-planned changes. To put these in place as soon as possible, to accommodate new or worsening symptoms, is so important.

Denial Is Disabling

The longer we stay in denial of our changed circumstances, the harder it is to accept that further changes to the way we live may be required.

Denial robs us of the opportunity to forge a better quality of life. Denial exasperates our disability. Acceptance allows us to embrace change with a sense of peace.

If we’ve done our homework on what to expect with our disease progression, the grief process that accompanies change, can be slightly reduced each time we experience the next stage of disability.

None of us want side dishes with our Chronic Diseases but unfortunately they are inevitable at some point.

It’s not easy to face the fact that our disease might be a progressive one. If it is and we remain in denial about that, we reduce our opportunity to have a life that can still have a sense of well-being, despite our physical restrictions.

Let’s Be Prepared

Be pro-active wherever and whenever you can in your health journey. Don’t let a new “what is” circumstance sneak up on you. Keep vigilant and keep reviewing what’s happening with your disease. Keep checking what is your new reality.

Life will be difficult and hard at times, especially when further adjustments are required to accommodate disease impacts.

Let’s choose not to make it harder than it needs to be. Let’s be prepared and be one step ahead where we can.

Take care

Sam 💞

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.

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

WEGO Health Award Nominee 2019- Best in Show Blog

WEGO Health Award 2018 Top 10 Nominee