Finding Ways To Survive “Living in Limbo” with Chronic Illness

Life isn’t always straightforward. It’s a bit of a cliche, I know, but it’s so true!

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

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

Nothing much has changed today. Life is still not straightforward. It will forever be a winding path. There are so many constant twists and turns.

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

That’s it.

No further explanation was required as my rare bone disease remained a mystery to us all.

We still don’t know what has caused it or even exactly what it is, although consensus of opinion is it is a rare disease called Osteopetrosis, and my Pain Management Specialist suspects a Mixed Connective Tissue Disease.

It’s been suggested a mutant gene, perhaps triggered by a virus or exposure to a chemical, may be the cause. “Just very unlucky ” are words repeated by Specialist after Specialist.

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

We definitely know I have hardly any new bone turnover, and my bones are generally too dense and unhealthy…..dead in fact!

I had scans this week on my feet, which show twelve fractures across both feet.

I also now have a condition calle Lymphorrhea. Basically, my lymphatic system is under so much pressure that it is causing excessive lymphatic fluid, and I am springing leak from my lower legs.

And as if all that wasn’t enough, my husband has been diagnosed with Alzhiemers Disease, and we are trying to navigate all this means for us.

Let’s Get 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 refused to slot nicely into a diagnostic category. It teases us with snippets of clues and then spectacularly, physically, breaks down in a way we don’t see coming.

All those feelings of frustration and disappointment have been re-ignited with further diagnoses of severe lumbar spinal stenosis, spinal instability causing relentless extreme pain, and disability.

I then ended up hospitalised in 2021 for six weeks, unable to sit, stand, or walk. A pelvic fracture, compressed nerves at L4, and another right femur fracture had paralysed me from the waist down.

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 that while it is good, I don’t have blood cancer (although they are not 100% sure about that as I now have an IGM paraprotien pointing towards a low-grade lymphoma).

Or I don’t have some other disease that has been suspected along the way, being told I have a rare bone disease, having the strongest bones in my body pathologically breaking is not ideal!!

Being told it’s 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 specialists asked me why that was worse? She wanted to understand why I would want to know I have a known disease that could be terminal or has no hope of treatment?

Answers Are Always Nice

I explained that 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, severe pathological femur fracture. I am constantly patched up and enduring difficult surgeries and recoveries as a result of the disease.

My left femur remains broken ten years on, as the disease hampers healing. My entire spine from C2 to S1 is riddled with severe degenerative disc disease, disc herniations impinging and compressing nerve roots and causing severe spinal stenosis.

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 extreme pain daily and so many unknowns with my husband’s diagnosis.

It can all be so tiring…..actually it’s downright exhausting.

I need to deal with it all, 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 and stay strong. I need to find ways to live in the limbo.

When we begin to feel a little overwhelmed by our chronic illness circumstances, we need to grieve again. 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.

Grieving is important to arrive at 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 this happens. Take it as a sign 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 adjustment will come a sense of peace again.

Your current time of weakness could 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

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