Life isn’t always straight forward. Not really a newsflash to say that I know!
24 months 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.
I was told recently that my bone biopsy results revealed “dead bone”.
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.
All we do know is that I have hardly any new bone turnover and that us causing my bones to become incredibly dense and unhealthy…..dead in fact!
The Right Decision
A sigh of relief was audible from my Surgeon as we reviewed the biopsy results at my post surgery appointment.
He can now sleep at night. He knows 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 that, as did the femur stress fracture he found during surgery.
I am relieved too that we prevented an emergency situation but I am also left feeling frustrated that my body won’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.
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 or some other disease that has been suspected along the way, being told I have a rare bone disease, is not great.
Something that has not yet been given 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
“Answers are aways nice”
I explained I need to know exactly what I’m dealing with. I want to know 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.
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 and ankles and I have a right sided sacral pain which cripples my right leg. My left femur remains broken 3 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 stenosis.
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 think 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!
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.