Health and Wellbeing

The disease I hate the hardest – Multiple Sclerosis

May 18, 2015

 

The coolest, and most loving, Mama and Nana in the world.

The coolest, and most loving, Mama and Nana in the world.

Hate is such a strong word.

I don’t think it should be bandied around lightly but I can say without a millisecond’s hesitation that hate Multiple Sclerosis.

The filthy scourge has been a spectre in my life for twice as long as it wasn’t and now I don’t even remember what a life without my darling Mama slowly falling prey to its insidious claws feels like.

These days, it’s something that we rationally deal with. We know now that Mum is permanently wheelchair bound, and we try to make life as simple as possible because we also know that simple daily tasks can be time consuming, arduous and exhausting when you can’t stand or walk.

Day to day we understand the struggles, the tiredness and the unreliable coordination and Mum handles it all with grace and style and a wonderful sense of humour.

But some days are worse than others. Some days there are falls, or the lack of coordination results in injury.

My mother’s independence is impressive. Sometimes my mother’s independence frightens me. because falling or hurting yourself alone is scary. And it’s not a rarity.

People with MS struggle with incontinence and keeping your dignity in tact not easy. Keeping your humour in tact is imperative, because some days it’s all you have.

I fucking hate Multiple Sclerosis.

Heaps.

I reckon the only person who hates it more than I do is my Mama.

Humour, courage and grace. I hope to be half the woman when I grow up.

Humour, courage and grace. I hope to be half the woman when I grow up.

MS has stolen many things from my Mama. She loved long walks and she was a fantastic dancer. Not ballroom, lounge room. A house party was her Broadway and I used to love watching her boogie as a child.

MS has not been able to touch the fact that my mum is a sensational Nana but sometimes my children get curious about why Nana is not like other Nanas.

“What’s wrong with your legs, Nana?”

“Why can’t you walk, Nana?”

They are tricky questions to answer, so we tend to say that Nana has a disease that stops her legs from working.

MS Australia and the Australian and New Zealand Association of Neurologists (ANZAN) – is launching an Australian-first educational comic designed to explain complex medical information about MS in a format that children will understand and engage with.

Medikidz explains Multiple Sclerosis

Medikidz explains Multiple Sclerosis

When I was asked to take a peek at this book I thought it was a fantastic opportunity to explain in greater depth what’s wrong with Nana.

We schnuggled up in bed with the comic and I let them know what it was about and that we were going to talk more about why Nana can’t walk. We were ready.

Kiks is at the stage of ‘why,why,why?” when we read and D Man was really confused about who the goodies and baddies were, which is kind of the point.

MS is when the goodies, your immune system, get confused and attack your myelin sheath which act like the barriers on the side of the nerve highway, thereby messing up the message going to your body.

Ultimately I think this comic was a tad advanced for my gang, but we’ll read it now and we’ll reread it regulary over the years so they’ll grow up kind of getting it, until they totally get it.

MS sucks, but it’s not a complete mystery. It’s just an arsehole.

With 23,000 people in Australia suffering from Multiple Sclerosis, and 1 in 20 people being affected by it, I’m sure that many people could read this and get a greater understanding of what the hell is going on.

I knew about the disease as a kid because primary school made us do the MS Readathon. One year I kept all of the money I raised because buying lollies was more important to me than finding a cure for a disease I didn’t understand.

I figure I’ve now made up that debt with the amount of times I put a wheelchair in and a out of a car, however I dearly wish I had just handed those gold coins over.medikidz explains multiple sclerosis

Because now I understand more than I would ever wish upon anyone in the world.

The Medikidz comic book series don’t just cover MS, they cover an array of illnesses to help kids understand their’s and their loved ones diagnoses, and you can find more about them on their website.

If you want to find out more about the hateful MS or donate to help find a cure, your can check out MS Australia.

 

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19 Comments

  • Reply Jenni from Styling Curvy May 18, 2015 at 8:11 am

    Brilliant initiative, we’ve known a few people with MS (one is in her late 20’s) and it’s devastating and cruel. this is a fantastic tool. Thanks for sharing x

  • Reply Amanda @ Cooker and a Looker May 18, 2015 at 9:01 am

    I hate MS too mate. Props to your mum for handling her condition with such grace. x

  • Reply Sam Stone May 18, 2015 at 1:13 pm

    MS sucks. Your mum is an inspiration.

  • Reply Sue May 18, 2015 at 2:38 pm

    Beautifully written and I hear your frustration – MS sucks and your mum is amazing.(Hugs)

  • Reply raphaela99 May 18, 2015 at 2:41 pm

    It’s a bastard of a disease. I am so sorry that your beautiful mum has it. The comic books look brilliant!

  • Reply Lisa Mckenzie May 18, 2015 at 7:15 pm

    MS is a bastard that’s for sure Xx

  • Reply San May 19, 2015 at 12:14 am

    When I think about HOW MUCH I love your Mum, I get a lump in my throat and an ache in my chest. She is truly amazing, so I can only begin to imagine how deep the love must be between yawl. The comic books??? I agree, brilliant, help kids to learn about and accept that these things happen sometimes. Better to prepare them for the ‘hard knocks’ that they will undoubtedly encounter on their journey….. I was wrapped up in cotton wall when I was little (no, I’m not a funnel web) – did me NO favours. Went into sensory overload when I was considered old enough to learn about what really goes on in the world. God, I have to admit to NO internet, a B&W tv and 2 channels to choose from. I’m tellin’ ya’ those were the days!!! What is GREAT is that they are getting closer to breaking the code when it comes to MS so never stop believing. It could even be tomorrow that they find the way forward and find a cure. As for yo’ mama? Drinks us under the table, one of the funniest women I’ve ever met and is a complete spunk to boot. See where you tinlids, and the grand tin lids, get it from!!!! Meantime… consider yourself hugged BIGTIME!!!!

  • Reply Carolyn @ Champagne Cartel May 19, 2015 at 10:08 pm

    Man, your mama is one fabulous broad. MS can go fuck itself, but you Colley women are greater than all of it. Love the idea of these comics. Explaining complex issues to little kids can be tough and having the tools sure would help. xxx

  • Reply Sasha @ Fromtheleftfield May 20, 2015 at 8:38 am

    Oh sweets, MS is just plain fucked. No other way to put it. What strength your darling Mama has. And not only does MS attack the body, but it challenges all your mental states, as you feel so alert in your mind but your body won’t cooperate. 🙁 Nothing worse. That comic is such a great idea, and here’s hoping more support and awareness is raised on such an important issue. xx

    • Reply Danielle May 22, 2015 at 1:55 pm

      So fucked. Perfectly put by the chick with the PhD!

  • Reply Nicole - Champagne and. Chips May 20, 2015 at 11:12 pm

    Oh wow. That’s shit. I had no idea your mum was dealing with MS.
    I remember learning about it at uni and everything was pretty bleak for sufferers back then, sounds like you mum is one of the tough’uns. The drugs are bloody good these days though ( in just 15 years huge leaps and bounds).
    One little thing you probably already know but in case you don’t- with a family history it is particularly important to keep your vitamin D levels in the normal range. The jury is still out on all the ins and outs of the disease but thee is a large percentage of peeps with vitamin D deficiency on diagnosis- believed to play some role

    • Reply Danielle May 22, 2015 at 1:54 pm

      I didn’t know about Vit D. That’s worth looking into. Thanks for the heads up, sweets.

  • Reply Sonia from Sonia Styling May 21, 2015 at 5:34 pm

    I hate MS, too. But I damn well love your mum – what a beautiful soul. x

    • Reply Danielle May 22, 2015 at 1:53 pm

      Yep, you know it, sister x

  • Reply Zanni May 23, 2015 at 11:46 am

    Oh that is intense Danielle. I had no idea. I was very close to my drama teacher in high school – she was a personal mentor. And she did not cope well when she found out she had MS. I won’t tell you the full story, as it’s too intense for words. I later knew another lovely young guy from college who was very severely affected. What a thing for you and your mama, and the kids to live with. Sounds like you are taking the best approach in how you tell your kids. x

  • Reply Chris February 4, 2017 at 10:15 am

    So true. I really don’t hate much… except for MS. I’ve known MS my entire life. My Dad was diagnosed with it when I was four. My wife’s father has it. My wife was diagnosed when she was 14.
    She died from it last year – she was 36. I am 37.

    Even as the MS stole almost every physical ability (speech, complete quadriplegic, sight, etc.) she never let it take her compassion and love.

    She remains a beautiful enigma.

    • Reply Danielle February 4, 2017 at 10:26 am

      Oh Chris, I’m so, so sorry to hear about your beautiful wife. It is such a horribly cruel disease, and she was so young.
      I cannot imagine how hard it was for her and continues to be for you.

      Neither do I hate much, but I hate MS even more after hearing how it has touched your entire life.

      Take very good care of yourself.

  • Reply Chris May 29, 2018 at 3:45 am

    Yeah, multiple sclerosis has been in my vocabulary since I started speaking. My Dad was diagnosed with it. It killed my wife in 2016 – she was only 36. It had stripped her of almost all ability to control her body. She spent the last 5 years of her life communicating through blinking.

    Yep, I love my wife. I fucking hate MS.

    • Reply Chris May 29, 2018 at 3:53 am

      Sorry – I just realized I had previously posted. Thank you for your comment. I am gifted with amazing family and friends. They totally look out for me and make sure I am taken care of. I have plenty of reasons to smile and laugh, and do so often.

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