What are the rules for this?

What are the rules for living with a rare bone disease? That’s the question my husband & I have been contemplating for the past few days.

I want to try & get out a bit more & when I suggested this New Year plan of mine, you should have seen his face. It was priceless & read like a book of horrors.

“What on earth are you thinking? “, I asked. “Don’t you want to take me out?”

His response was slow & measured. He did want to take me out but……

He confessed he is petrified that the pole in my leg might snap ( thanks to the Specialist for putting that thought & vision in our minds!!)

Yes, the pole is past its used by date because its been supporting the unhealed break for too long & is at risk of metal fatigue. Yes, it needs replacing but Drs don’t want to do more surgery until mid year as I’ve had too much surgery last year & my body needs a break.

So, we have 5 months ahead of really not knowing quite how to live under these circumstances. No one has written a rule book. No one even knows what this disease may or may not do next.

Pain & fatigue limits me. I guess that’s our best indicator of what we should or shouldn’t do. Just listen to my body. Let it guide us. That’s what we’ve decided anyway.

If I’m having a good day ( big if) we’ll go out for a coffee or lunch. I’d love to get to our local shops but my ever loving husband has banned that idea until after the school holidays as he has visions of me getting knocked off my crutches.😊

We sound paranoid! It’s quite weird how we adapt our lives in accordance to knowledge. Before my leg snapped in two, we were oblivious to that event even being possible. We had no idea I had this rare disease. We thought Rheumatoid Arthritis & a Colostomy were restrictive enough but I was finding ways to live well & get out & about managing both.

So, I guess we are writing the rule book or the “how to” guide together. It’s pretty short so far:

1. Listen to my body

2. Avoid crowds

3.  Keep enjoying the simple things in life & be content.💗




2 thoughts on “What are the rules for this?

  1. I love this article! How courageous are the both of you! (Ok hubby somewhat a little reluctantly but at the end if the day he just wants to see you happy) I love how you both continuously review life, think of alternatives and be creative with how to enjoy life! Simple things are the best! On NY day
    Night we bought a serving if hot chips and drive to the beach, sat in the car as it was drizxling with rain and watched the world go by!! We had a lovely time… So pretty to watch rain fall on the water… Your trip to see Xmas lights gave me that idea.. You continue to inspire from afar!! Love to you both and hope you have a coffee date real soon xxxx

    Liked by 1 person

    1. I’m so glad you did that on NY night Kaye. Just perfect.
      A whole new exciting year ahead for you both & I can’t wait to tag along for the ride from a distance & see where it takes you. Lots of love xxx


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