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What It's Like to Live With a Progressive Chronic Illness

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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!

So how do new health chapters sneak up on me when I’m so aware my disease is uncureable, untreatable and progressive?

A False Sense of Security

When you’ve been living with chronic illness for a while, I’ve realized 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
  • Utilizing all kinds of mobility aids
  • Being approved for a top level Home Care Package (inclusive of permanent residential care 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 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 rare 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 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 Sjogren’s syndrome, as my rare disease is so consuming.

I knew I had gastritis and it was getting worse, but last year 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 recent dental visit caused a sudden painful flare of this horrid condition. I’m trying to forget I have a tongue tumur (albeit benign at this stage). It needs reviewing though as it’s not going away.

I’m recovering from three rounds of recent lumbar spinal surgery, due to my bone disease attacking my spine. It’s causing severe spinal stenosis, as excess bone continually grows into my spinal cord, compressing nerves. It seems it won’t give up. I’m back on that merry-go-round of it collapsing in a new way and debilitating me again.

Breathe In, Breathe Out

As I lay on my stomach in a CT machine recently, waiting for the radiology doctor to inject my L4/L5 facet joint on both sides, all I could think is, “Here we go again.”

My spine is continuing to collapse in spectacular fashion and neither my spinal surgeon or I can keep up with it. He ordered the facet joint injections as a diagnostic test to see if maybe we should try radiofrequency neurotomy rather than more major surgery.

Lying on my stomach reminded me I also have a 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-minute procedure.

I’ll Have Fries With That!

With gastritis and gastroparesis, fries are the last thing I’ll be having, but that catchphrase sums up perfectly what life is like when dealing with worsening 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, all causing 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? What’s going on now?

How Do You Cope Living With A Progressive Illness?

Keep Reviewing the Certainties

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 chronic illness.

So what can we do to keep one step ahead of our diseased bodies? I do have a few tips that may help:

  1. Keep a symptom diary. If a new symptom occurs or an existing one worsens, I have a four-day rule (unless it’s clearly an emergency and I need to go to ER). If my symptoms are worrying or still severe after four 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 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 Only Hurts You

The longer we stay in denial of our diagnosis and 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 can exasperate 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 primary chronic illness, but unfortunately they are inevitable at some point. It’s not easy to face the fact our disease might be a progressive one. If it is and we remain in denial, we reduce our opportunity to have a life that can still have a sense of well-being, despite our physical restrictions.


Choosing to Be Proactive

I choose to be proactive wherever and whenever I can in my health journey. Often I’m so battle weary from the fight, it’s not an easy choice. Curling up in a ball and retreating does cross my mind.

I love life though. I can’t get out much, aside from medical appointments, but I’ve found ways to be a part of a bigger picture and connect with others.

I have founded and administer a global online support forum for people just like me. I blog, I write and I volunteer for a not-for-profit arthritis organization as a peer-mentor, providing support via a weekly phone call to people newly diagnosed with inflammatory arthritis. All of this is done from home, from my bed if necessary. It gives me purpose and doesn’t allow my worsening health to have full control.

The key to living as well as possible with a progressive disease is to 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.

Final Thoughts From Some Friends

I asked some of my “Medical Musings With Friends” forum members what living with a progressive chronic disease was like for them. I’ll leave you with a few quotes from others living daily with this reality.

“The anxiety can be [debilitating] knowing you have a loaded gun aimed at the back of your head every single day. On the flip side, you make every moment count and are thankful for each sunset. This is the paradox we face on a daily basis.” — Erika M.

“Living one day at a time is no longer just a cliché. It is reality and a survival mechanism. I can’t look too far into the future because it’s overwhelming. It’s so important to focus on what I can still do and keep doing it and not worry so much about what I can’t do. I would likely just give up without faith.” — Gina B.

“If I think about my condition in its totality, I get stuck in fear. So, I focus on no more than three days at a time. It makes it hard to make big life plans, but it is all I am capable of doing. I used to dream big dreams. Now my goals are much more pragmatic.” –Kimberly A.

Getty image via Anna Ismagilova

Originally published: October 1, 2019
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