The Twists And Turns of Chronic Illness Life

Life isn’t always straight forward. A bit of a cliche I know, but it’s so true!

3 years ago I sat in pain with 2 broken legs, recovering from 2 major surgeries 8 weeks apart. I was facing a future filled with so many “unknown” elements.

At that moment, “Life isn’t straight forward”, is what came to mind!

Nothing much has changed today.  Life is still not straight forward. It will forever be a winding path. So many constant twists and turns.

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Dead Bones, Tongues and Biopsies

I was told in 2016 that my bone biopsy results revealed “dead bone”.

That’s it.

No further explanation required as my rare bone disease remained a mystery to us all. We don’t know what has caused it or even exactly what it is. It is a disease if it’s own kind. Idiopathic in nature. A mutant gene they believe. “Just very unlucky ” are words repeated by Specialist after Specialist.

Words always followed by, “I’m so sorry”.

All we do know is that I have hardly any new bone turnover and that is causing my bones to become incredibly dense and unhealthy…..dead in fact!

In 2019 my tongue decided to grow a crater whivh resembled a squamous cell carcinoma. The pain and discomfort was incredible. My biopsy revealed deep, intense infiltrative inflammation and ulceration. A benign painful tumour. No one knew how long it would take to heal. It took 12 months and it still flares from time to time.

Back to 2016…The Right Decision

A sigh of relief was audible from my Othopedic Surgeon when we reviewed the biopsy results at my post surgery appointment in 2016

He said he could now sleep at night. He knew we both made the right decision to insert a rod in my right femur. It was definitely ready to break spontaneously, with no warning,  just like the left leg did 24 months prior.

The biopsy results confirmed our worst fears, as did the right femur stress fracture he found during surgery.

I was relieved too. We had prevented an emergency situation but I was also left feeling frustrated that my body wouldn’t behave. It doesn’t fit the mould. It refuses to slot nicely into a diagnostic category. It teases us with snippets of clues and then spectacularly, physically, breaks down in a way we didn’t see coming.

All those feelings have been re-ignited with my recent diagnosis of a lesion of some kind in my caudal equina space at l4/l5, resulting in severe spinal stenosis, relentless extreme pain and disability.

My Specialists, in an effort to be encouraging, share test results with me and often say;

“Good news, it’s not such and such”

When Good News Is Bad News

I explain while it is good I don’t have a blood cancer, tongue cancer or some other disease that has been suspected along the way, being told I have a rare bone disease or a rare tongue tumour, is not great.

Being told it’s something without a name and is likely a genetic deformity, an idiopathic disease with an unknown prognosis, is actually worse than being told I have something known by the medical profession.

One of my Specialist asked me why is that worse? She wanted to understand why I would want to knowI have a known disease that could be terminal or that has no hope of treatment?

Answers Are Always Nice

My answer?

“Answers are aways nice”

I explained there is a sense of assurity in knowing exactly what I’m dealing with. Known diseases have a better chance of understanding the prognosis. We have no idea the path my disease will take. We know it’s progressive in nature but we don’t know how quickly and what the progression will involve.

It continually surprises us with out of the blue serious events.

We have already been surprised by a scary pathological femur fracture and my bone marrow is being damaged.  I am being constantly patched up and enduring difficult surgeries and recoveries as a result.

I constantly fracture both my feet. We’ve lost count of how many foot fractures I currently have. It’s around 6 or 7.

My left femur remains broken 6 years on, as the disease hampers healing. My entire spine from C2 to S1 is riddled with severe degenerative disc disease, disc herniations impinging nerve roots and severe spinal stenosis. I’ve had 3 spinal surgeries in the past 18 months, with more on the horizon.

Finding Ways to Live in Limbo

I want to be able to prepare for what the future holds in some way. We all, in general, like to plan ahead in life. We plan for retirement,  we plan holidays , we plan special events. We look forward to things.

It’s called living.

I’m in limbo. I’m in pain. I face more surgeries and an unknown future.

Added to the uncertainties of Chronic disease is the overarching uncertainty the entire world is facing with the COVID-19 pandemic. For the chronic illness sufferer this has added another layer of complexity in terms of disease management.

I’m so tired, no actually I’m exhausted.

I need to deal with this though as answers may not be forth coming, not the sort I would like anyway. I need to be prepared for more of the unknown, more questions than answers.

I need to be strong, stay strong. I need to find ways to live in the limbo.

I will find that strength but at this precise moment I’m so physically tired from the constant severity of my pain, I can barely tbink straight.

I need to grieve again. I know that grieving is part of acceptance. Even when we have accepted our situation, as I have for the most part, there are still seasons where we will go through periods of grief again.

I’ve shared before a grief model I used, with organisations dealing with massive change, when I worked as a Change Management Consultant.

It’s so clear and simple, it’s worth sharing again.

The 5 G’s of Change

Griping – this stage is when you feel like you just can’t do this. It’s all too much.

Groaning– this stage is the complaining stage. You want to let the whole world know how difficult life is.

Groping – during this stage you begin to walk forward as if in a forest, moving the trees out of your way so you begin to see a little clearer

Grasping – You begin to understand what the new situation means

Growing – You embrace the new, find ways to live again and acceptance brings peace.

I’ve journeyed through this model a number of times over the years and I’m taking some time again to revisit it.

Life with chronic illness will always have twists and turns. It will cause us at times to walk in circles.

We will find ourselves feeling all the stages of grief washing over us again at some point on the winding road.

Don’t fight it when that happens. Take it as a sign that you need to look after yourself for a while and give yourself time to regroup.

Answers may not come, life may not get any easier but you will adjust. With that adjustment will come a sense of peace again.

Your current time of weakness will become your future strength.

Life just isn’t straight forward…ever!

Take care

Sam xx

And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.

2 Corinthians 12 v 9

WEGO Health Award Announcement

Hi Everyone,

Firstly I want to thank those who nominated me for three #WEGOHealthAwards for 2020. I am so honoured and grateful as this is an amazing opportunity to raise awareness of my Facebook Support Forum, Medical Musings with Friends , and reach out to more people in need of genuine care and support.

So, now I’m nominated my goal is to become a finalist, particularly in the Best in Show: Community Award category.

The link below will allow you to click “Endorse” my nominations, which is the way the voting system works in the WEGO Health Awards.

You will see you can Endorse me for one, two, or three categories. Once you click the Endorse button it takes you to another screen where you choose which award nomination you are endorsing:

  1. Best in Show: Community
  2. Best in Show: Blog
  3. Health Care Collaborator

Thank you so much for your support, not just of me but for my forum and for helping me spread the word about Medical Musings with Friends.

If I can reach more people in need, as a result of these nominations, I will be absolutely delighted.

Love
Sam xx 💞💞

Healthcare Collaborator Nominee 2020
Best in Show: Community Nominee 2020
Best in Show: Blog Nominee 2020

https://www.wegohealth.com/Sam/awards

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

I’m a member of  the Chronic Illness Bloggers Network  the  Grace Girls Facebook Group and the Salt and Light Linkup Group

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2 thoughts on “The Twists And Turns of Chronic Illness Life

  1. Sam, My mom had a very similar belief about new diagnosis’s. She would tell her doctors give me a name. Otherwise how do I know what i am battling? Better yet how do I explain it to others. She needed to tell people what she had had a name. Her doctors often said you have DCD (Diabetes Crap Disease). On her death certificate I almost listed DCD. I am pretty sure she would have laughed. Many things in her final 10 years were marked as DCD.

    Liked by 1 person

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