Where is the rule book?

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.

Sam xx




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.

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women




8 thoughts on “Where is the rule book?

  1. Fantastic post! I do believe we all need to listen to our bodies, almost more than the doctors that do not live in our bodies. We know what is right, so we just need to create our own specialized rule book that is only good for ourselves!!!!

    Liked by 1 person

  2. You’re so right! and strong in your attitude. Your strength is in our Lord! Just a funny side note – I’ve been wondering who “they” is, and who writes the rules for many things. Like, who decided you have to have a full sized couch in your very small living room? Hoped that made you smile!


    1. Ha ha, April…..that is so true!! Way too many rules made up by what has often been called “the faceless people” 😀
      For what it’s worth I only have a 2 seater sofa as that fits better than a 3 seater. It’s funny though as I can’t even sit on it as it’s too low and I need a high set armchair. I’ve often contemplated just having nothing but armchairs but “the rules & they who write them” always put a couch with armchairs.
      I might just break that rule I think.
      Thanks April for your comment and adding a little humour xx


  3. I think that writing your own rule book (and breaking any rules you did find along the way!) is probably the best way to go about it. I’m finding that even after a while with invisible illness, plus the stoma, things are a constant learning curve, and with everything in a constant state of flux there’s no rule that I can apply to coping and dealing with life and my health. I love your positivity and focus on making the most of the situation; I need to work on that at the moment as I’m feeling as though I’m struggling to tread water at the moment, and appreciating the smaller things can really help at such times. Wonderful post Sam!

    PS. Also wanted to let you know I’ve nominated you for the You Behind The Illness Tag (no pressure to do it, but I wanted to let others know about your blog) 🙂


    Caz x


  4. Thanks so much Caz for your comment and the tag. That’s so lovely 💗
    I do understand that treading water feel. I’ve been like that lately with my pain levels escalating. I think there will always be periods with chronic illness where we just have to hang on tight, weather the storm and hope that “this too shall pass”.
    Focusing on something I really enjoy though does help a little with dealing with the really tough times. I call it my “distraction therapy”.
    Coffee helps too 😂
    Thinking of you
    Sam xx

    Liked by 1 person

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