Living with Heart

My gifts from santa

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With the season of giving upon us I’ve been thinking of all the gifts that have manifested in my life since Inflammatory arthritis came and took up residence. Full disclosure – this has been a hard one to write because although I have made a conscious choice to focus on the positive aspects of my disease – there is still a whole lotta crap that comes with it as well.

1. First of all I have the pure unadulterated luxury of time. In this world of extreme ‘busy-ness’ I have that elusive but double-edged sword gift called ‘time’. I gave up work in early 2014 and I probably will not work again – unless my arthritis really gets it’s act into gear and settles down.
 

So I have time. Time to spend with friends in an in-depth, meaningful way. I have time to read, to see weird movies, to research for friends and time to volunteer in the arthritis community. I also have time to potter and to ponder. I so often hear from friends how busy they are, how they can’t fit anything more into their life and I feel a faint wistfulness. Nah, not really – well maybe sometimes in the dark of night. Slow, small living is fitting me nicely. 

2. By some magical sleight of hand the burden of my arthritis that I thought would ruin my kids teen years turned into gifts that they are still learning from. (OK – so that sentence sounded great inside my head and might be true but also might be another warped construct of my brain.)

I felt guilty for not picking them up from school every afternoon – but- they learned the independence of walking home or catching a lift with friends.

I felt guilty that the meals I was putting together weren’t nutrition plus – but – both kids are healthy a decade on and don’t appear to have any physically discernible mineral or vitamin deficiencies (although Dizzle does have that weird big nose issue…)

I felt guilty that I couldn’t make it to all of their sporting events – but – HotY stepped up to the plate and never missed a game, match or quarter. This really cemented a deep bond that both kids have with their father.

I felt guilty that I was setting a ‘sick’ or somehow ‘weak’ female role model for them – but – my numerous sisters stepped up to the plate and filled the gap. 

When I look back on this perceived ‘gap’ I realise that Gem & Dizzle saw me struggle, in pain, sometimes unable to walk. But they never saw me quit or back down from what I was faced with. 

Well, they probably did but I have a little dream cave in my head where they saw me as a warrior fighting some mythical beast and always coming out triumphant. But, there were also the times I was on the floor in tears.

So despite all my worrying and monumental stressing that they would be somehow deficient because of my illness, Gem & Dizzle are driven, independent young adults that don’t shirk from a hard job (unless there’s a pub crawl on and then Dizzle will shirk till the end of time). Dizzle looks back on his teen years following my diagnosis and says “You were always home in the afternoon – I just remember you were always home when I needed you”.

Did I want to be home – hells no. But that cloud had a silver lining because when they needed a sounding board I was there. I remember one afternoon when I was so fatigued that I literally couldn’t lift my head from my pillow. The kids were fighting and when I didn’t appear to loudly intervene they bought the fight to my bedroom. No biggy. I was still involved in their life – even from my bed.

3. I am a different person than I was a decade ago. If I hadn’t become ill I never would have started my practice of meditation and my practice of mindfulness. I would never have started my practice of gratitude. I know these things have made me a better person and a better friend. 

4. I have learned what it is to be married to a man who has an unshakeable belief in me. A man who married me for better, for worse, in sickness and in health and got the sickness part in spades. He is my anchor here.

5. I learned how strong I am. Like I am seriously as tough as nails. When faced with constant pain you either have a cup of concrete and toughen up or you fold. There was no ‘folding’ happening on my watch.

OK – so this all sounds so wonderful and deeply moving blah blah blah. And all of the above is true. But its still a shit thing to have a disease that won’t go away and is so unpredictable. I still get jealous of the busy people that have so much they have to fit into one day that they complain about it. And I still get angry at people who are perfectly healthy and don’t appreciate every second of it!

So I have finished this fantastically positive post with a blast of reality. Wishing you all a festive season filled with as much laughter & companionship as you want and with all the gifts you truly need. Ill see you in 2017!!

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective. 

Michelle

4 Comments
  1. Thank you for sharing your most private thoughts. I understand totally and often feel the same way. I’m going to sit and really think about what you wrote and how our kids do benefit from us being at home.
    Many thanks for your positive words….. Jordan st what I needed. Have a great Christmas and take care. 💞💞💞

    • Thanks Susan. Its definitely a bumpy road being a mum – but being a mum with a life long illness is throw you down on the ground 4WD terrain! It is good to take a moment and push the positive to the front and challenge the negative. Wishing you and your family a wonderful holiday season! Michelle

  2. great post Michelle

    • Thanks Ree – wishing you a wonderful Christmas with your family!

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