The Twists And Turns Of Chronic Illness

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.


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 remains 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!

Now my tongue has decided to grow a crater. My biopsy reveals deep, intense infiltrative inflammation and ulceration. A benign painful tumour. No one knows how long it will take to heal.

We don’t even know if it will heal. This journey is far from over.

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 that we 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 new tongue episode.

My Specialists, in an effort to be encouraging, share test results with me and 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 know that I 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 that 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 5 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 just had 2 spinal surgeries in the past 6 months, 3 months apart, with more on the horizon.

Tongue surgery is a future likelihood hanging over my head.

The pain is unrelenting and nothing much reduces it’s intensity. I am, for want of a better word, crippled.

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.

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 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.

When I worked as a Change Management Consultant I used a grief model with organisations dealing with massive change. I’ve shared it on my blog before but 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

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.

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WEGO Health Award 2018 Nominee



10 thoughts on “The Twists And Turns Of Chronic Illness

  1. Dear Sam, I cannot fathom the journey the universe has given you. There are no words to the sadness I feel when I hear of your suffering. And yet your beautiful soul shines through like a warm bright light that nothing can dim. I’m so glad you share your intimate journey with us. I’ll keep you in my prayers dear friend 🙏🏻❤️! Hugs to you! Marla


  2. Oh Sam, I wish I had something even remotely useful to say. I get the frustration with something that there seems to be no reason, name, understanding or explanation for. When you said you’re “feeling frustrated that my body wouldn’t behave. It doesn’t fit the mould”, that’s been a stumbling block for me that you can’t really get past. I still don’t know why my bowel decided to die, I don’t know if it’s affecting anything else, the connective tissue disease is ‘undifferentiated’ (ie they don’t have a clue) and all of that sort of stuff isn’t helpful. As you say, you’re now in a place of limbo not knowing the extent of what’s going on or what needs to happen, like with possible tongue surgery. I just hope more answers and a way forward come your way sooner rather than later. You write so openly, so authentically and I take my hat off to you for everything you go through, even though it is painfully unfair. Sending lots of love  ♥
    Caz xxxx

    Liked by 1 person

    1. Oh Caz, my bowel story is similar to yours. We have no idea why mine collapsed so severely and refused to be fixed with conservative surgey. It left me with a non functioning bowel and the need for my permanent stoma. Also thought to be related to an undifferentiated connective tissue disease.
      We are a right pair aren’t we!!

      Thank you so much for your ongoing care and support. You are amazing. Lots of love xx

      Liked by 1 person

  3. Hi Sam, my heart hurts for what you are going through! Thank you for sharing your story. I am in the midst of a sickness that took me down seemingly overnight 7 weeks ago and we have no answers and no treatment since we don’t know what it is. I go back and forth between grieving and groping. It’s hard to move forward when I don’t know what to expect.

    Liked by 1 person

    1. Oh Aimee, I so feel for you. The early stages of becoming unwell are the hardest of days. It’s difficult not to worry and wonder, no matter how strong our faith. I’ll be keeping you in my thoughts and prayers and particularly praying answers will be forthcoming in a speedy way. Please keep me posted. Take care xx


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