What are the rules for living with a rare bone disease? Where can I find that rule book?
That’s the question my husband and I have been contemplating over recent weeks.
I want to try and get out a bit more and when I suggested this great plan of mine, you should have seen the look on his face. It was priceless and read like a book of horrors.
“What on earth is wrong?”, I asked.
His response was slow and measured. He did want to take me out but……
He confessed he is petrified that the pole in my leg might snap ( thanks to my Surgeon for putting that thought and vision in our minds!!)
Yes, the pole is past its used by date because it’s been supporting the unhealed femur break for too long and is at risk of fatigue. Yes, it needs replacing but my Surgeon doesn’t want to do more surgery unless an emergency. I completely agree with him. I’ve had way too many surgeries, I’ve aspirated twice under General Anaesthetic and my body needs a rest.
Facing A Dilema
So, we have a dilema of not really knowing 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 and fatigue limits me, disables me, renders me useless most days. 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 we’ll go out locally for a coffee or lunch. For longer outings we will have the services of a carer soon to accompany us.
The carer is partly for peace of mind if anything should go wrong while we are out. Mostly though we need help to assemble and disassemble my mobility scooter.
My husband’s osteoarthritis is severe and makes that particular task a huge challenge. We can’t afford to have him totally out of action with an injury, not if we can avoid it.
Are We Paranoid Or Just Realistic?
Do we sound paranoid? Are we though or are we just being realistic? Maybe we are just facing our new reality.
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. Blissfully just getting on with life. We had no idea I had this rare disease.
We thought Rheumatoid Arthritis and a Colostomy were restrictive enough but I was finding ways to live well and get out and about managing both.
Writing Our Own Rules
So, I guess we are writing the rule book, our rule book, together. It’s pretty short and sweet so far:
1. Listen to my body
2. Avoid crowds
3. Accept help
4. Keep enjoying the simple things in life and be content.💗
After all is said and done, I think the best approach is to just take one day at a time and not worry about putting too many rules in place.
So, what about the rule book?
Hmm….It’s a work in progress, very flexible and I have a feeling even if we do write it, or find it, we’ll probably break the rules anyway.
I’m ok with that. Actually, I’m more than ok, I’m content with that and content to live my life as best I can, no matter the circumstances.
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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