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little miss lucia's lymphoedema life

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Work, rest, play – and Lymphoedema

April 26, 2014 by Jo-Ann Greene 2 Comments

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Life with a husband, two children and a crazy dog can be a pretty busy one – but anyone in the same position would say the same thing. Parents with more than two kids have my full admiration, two parents working full time amaze me and single mums are simply superheroes. Life is busy whoever you are and everyone manages in their own ways.

I have been told by various people in the past that it must be hard finding the time to carry out Lucia’s therapy, skincare routine, compression etc as well as just dealing with daily life as a family of four. But our daily life has included all of this since Lucia was five months old so it is totally normal for us.

Our Life

A bit of background to our lives – my hubby works full time, I work two days per week and Max is in Primary 1 at school. On the days that both Daryn and I are at work my mum and dad take care of Lucia and pick up Max after school.

So between working, school runs, homework, swimming classes, football coaching, running a house, feeding the family, walking the dog, visiting family, having play dates, having grown up time and enjoying life in general things are pretty busy! But one of our top priorities is ensuring the management of Lucia’s Lymphoedema which takes a certain amount of time everyday on top of everything else.

Lymphoedema management entails Manual Lymphatic Drainage – we call it her ‘rub’ – at least twice a day, meticulous skincare routine, getting her compression tights on, keeping them on and continuously ensuring they are on properly, trying to stop her hurting her legs or feet when she is running about, ensuring she has enough exercise to keep her lymph moving but also making sure she doesn’t do too much as well as fitting in appointments with our Lymphoedema Physio and Podiatry.

The ‘Rub’

The most time consuming element of treating Lymphoedema is the ‘rub’. Every morning and evening we set aside time to carry out this massage. It used to take roughly an hour each time as it isn’t easy to get a baby to lie still – then we discovered Peppa Pig on the Ipad! Lucia will now happily lie up on the bed and watch episode after episode without moving a muscle so we can now usually get her rub done within 40 minutes.

We are a well-oiled machine and have a good routine. On the days I work I leave the house early and take Max to school while Daryn goes into work a bit later so he can do Lucia’s rub. Then depending on who gets home first, one of us heads to my parents to get the kids and we either do Lucia’s rub at their house or try and get home with enough time before bed to carry it out.

On my non-working days we have a bit more time but I still try and do it shortly after Max goes to school so she can be rubbed, skincare routine carried out and compression on as early as possible. It means we are never out of the house too early in the morning so all appointments we need to attend or places we need to be aren’t until later on in the morning if possible as we simply can’t get out first thing!

But it fits into our routine. It is part of our lives. In the mornings it gives Daryn and Lucia or me and Lucia some lovely bonding time together and in the evenings the four of us usually all head upstairs together and it gives us some lovely quality time. It is fair to say that Daryn and I are also big Peppa Pig fans – Daddy Pig is our favourite!

It is so much part of our lives that when Lucia is sick – even just with a cold – and we aren’t allowed to do her rub so we don’t spread infection around her body, we miss it. We almost don’t know what to do with ourselves and all the extra time we then seem to have! But we make the most of it and read a few extra stories in the morning or make a puzzle, spend an extra ten minutes round the dinner table or have a dance off in the kitchen.

Normality!

Then, when we start back to it again, our wee routine falls back in to what is normal for us and we try and fit in a few extra rubs to get the lymph moving well again.

So yes, life is busy. But good busy. And ours ticks along beautifully in our own way – just as everyone else’s does in their own way. And we are as happy as can be.

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Comments

  1. Helen says

    April 28, 2014 at 12:06 am

    Ah great this did not work yesterday! I always enjoy reading about your life as a busy family … Through your writing there is such warmth, it is wonderful..

    Reply
    • Jo-Ann Greene says

      April 28, 2014 at 6:43 pm

      Technical hitch the other day Helen! Thanks for your kind words as always 🙂 xx

      Reply

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a little bit about us

Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More

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