Lyme Disease Awareness Month #getaware

As promised, some more words from the people I love. Next up is my beautiful cousin Kylie and my incredible mother Debbie.

Hi, my name is Kylie and my amazing cousin Mia has asked me to write about my perspective of her battle with Lyme disease.

The first time I heard Lyme disease mentioned was on an episode of the Simpsons.  Miss Hoover told her class that she had Lyme disease and she would be away for a while.  Lisa falls in love with the substitute teacher, Mr Bergstrom and is heartbroken when it turns out that Miss Hoover’s Lyme disease was psychosomatic and he leaves for his next substitute assignment.   Miss Hoover is made to look like a hypochondriac, the plotline wraps up neatly in half an hour and everyone is happy.

Fast forward a few years (OK, more than a few) and I heard the term for a second time. This time though, it was in relation to someone I love. My gorgeous cousin Mia, who had been suffering with a variety of symptoms for years and no one had been able to tell her what was wrong.  So I decided that, while The Simpsons is good entertainment, I probably shouldn’t rely on it for my medical information and did some research myself.

I am the oldest grandchild in my family and Mia is the youngest, with 19 years in between us. I’ve always tried to look out for all my cousins- there are nine of us in total – and, while they would probably call me a pain in the backside at times, we are all pretty close.  Which is why it hurts to watch Mia go through what she is going through with Lyme. Lyme is a silent disease in many ways- Mia doesn’t look sick to many people and gets some strange looks when she is out in her wheelchair.

But to those of us who know her, it’s not invisible. We see when she has lost more weight, we notice when she is physically exhausted and can’t stand anymore and we watch her sit on the couch at family get togethers, wanting to play with her young cousins but not having the energy to do so.  And that’s the stuff she lets us see. I know that she hides her really bad symptoms from us, those days where she has to have help showering because she can’t lift her arms to wash her hair or can’t leave the house because her joints ache so badly.   I see the legacy of these symptoms in my Aunt and Uncle, Mia’s parents, in the stress in their eyes when they look at their daughter or the frustration they go through when yet another Doctor tells them that the disease that is causing their daughter to suffer so much doesn’t exist in Australia.

So when I think of Lyme disease, my main feelings are anger and frustration. Frustration because I can’t fix this. Frustration that I didn’t have an answer for my eight year old son when he asked if there was a cure for Mia’s Lyme disease and if he could just take it away for her.  And frustration and anger that our Mia, our beautiful, talented, funny, Mia can’t get her disease recognised. She deserves everything this world can offer her and I wish I could give her that. I can’t, but at the moment I’d settle for Lyme disease getting the recognition and funding it deserves.  I don’t think it’s too much to ask- can you help me spread the word?

 My incredibly strong and kind mother has lots of words of wisdom, for other carers I think her words will be helpful. 

I find it difficult to get a message across when writing but here you go. Being a mum of a chronically ill child is very hard. Watching your child continue to be sick and not have support by the medical industry is so confusing, I have never been a big fan of doctors and hospitals (this experience has not helped) preferring to live a healthy life, in the hope of preventing rather than trying to cure. Unfortunately this does not prevent your child being bitten by a tick. We are lucky because we have been able to explore every available option when it has come to treatments, and we have tried everything. Frustratingly, 7 years down the track Mia is still unwell, sure we have had some progress but when you are coming from not being able to do much more than getting out of bed to get to the couch, the progress is not very exciting sometimes. I want what every mum wants, to see their child reach all their milestones when they are supposed to reach them, it breaks my heart to watch my 19 year old daughter need to come home at 7.30 at night because a small outing has wiped her out.
Lyme disease has taught me so much, mostly, not to expect people to understand, you just can't, it's really difficult to understand how incredibly crap it feels to not only have a chronically ill child but to have your government and the medical industry give you no support because...... Why? ......who knows?
But it has also taught me that my daughter is strong, determined, and has an amazing attitude and that because of those things she is going to get better.

I'm baaaaaaaccccckkkk.

Hey guys! So obviously there has not been a lot going on on the old blog lately.... I'm sorry I've been MIA (get it? It's my name and Missing In Action?) I let fear overtake me and in doing that I let my illness win. So I've decided I'm fighting back again! As it's Lyme disease awareness month what a better time to get back into bringing awareness to Lyme and other invisible illnesses!
Over the next month I'm giving the reigns over to the people I love, once a week a loved one of mine will write about what it's like for them to live with Lyme disease, because they're in it just as much as I am.

So to start us off may I introduce you to my beautiful best friend Maddie. She's incred, and as you will find out, she is very funny.
So Maddie, over to you.

Hey. I’m Maddy. If you’ve been on this blog this long then its time you met me. I’m Mia’s best friend. But not the type of best friend who wears matching sparkly necklaces (although, there is an appropriate time for matchy matchy) and I’m certainly not the type of best friend who is ‘like, so totally her soul sistah. Like, obviously.’ I’m just the best bud that will be the best bud for the rest of her life. And vice versa. Somethings you just know. (Especially after a decade of friendship)
        That’s why Mia asked me to write this post. Because she thought it would be cool for me to share some of the things I feel about her disease (Lyme; just in case you're new here) and what its like to be her best buddy. So, here are just a few things I would like to say…

1. HAVING A FRIEND WITH A CHRONIC ILLNESS DOSENT AUTOMATICALLY MAKE ME A GOOD PERSON.
        If there is one thing that makes my blood boil, and pokes the angry beast inside of me that is constantly lurking just below the surface looking for a fight, it's when people say to me, “Oh, your friend's in a wheelchair? Good on you!” or some variation of that. This usually happens when people ask me what I got up to on the weekend, and I tell them about some tomfoolery Mia and I got up to. The conversation usually goes….‘-oh it was super fun, but the get away was a bit awkward because I was pushing Mia in her chair. And it’s hard to throw Molotov cocktails while running from the police and pushing Mia. If you know what I mean.’ To which the audience I’m wooing usually replies, ‘Oh you’re such a good person!’ No. I have fully functioning arms and legs; I use them. So did Mother Teresa, but I’m not sure I’m in her league quite yet. Get an education you uncultured swine.

2. IF YOU STARE AT HER LEGS WHILE I’M PUSHING HER THROUGH A SHOPPING CENTRE, I’M GOING TO STARE AT YOU UNTIL YOU BECOME PHYSICALLY UNCOMFORTABLE. AND THEN I’M GOING TO LOUDLY POINT OUT HOW DISTATESFUL I’VE NOTICED YOU ARE. AND THEN, IF YOU’RE LUCKY, I’M GOING TO TRY AND RUN YOU OVER WITH HER WHEEL CHAIR.
        This one doesn’t need much explanation. Unless you don’t understand social graces, I don’t want to catch you staring at my best friend like she’s a delinquent teenager who stole a wheelchair. I will run you down.

3. EVEN THOUGH YOU CAN’T SEE HER ILLNESS, DOESN’T MEAN IT’S NOT THERE.
        This goes for every other invisible illness as well actually. Just because she looks happy and healthy when you see her, doesn’t mean she is. It physically breaks my heart when people tell Mia she’s not really sick, it’s just “in her head.” Because they’ve not seen her when she’s crashed and burned because her body just cant take it any more. Sometimes I forget just how sick she is. We recently went on a trip to Cairns (because we’re adults), and that was the first time I actually saw her body call quits in a big way. She went to the bathroom after a particularly long day and called me in, she had collapsed into a heap on the bathroom floor and kept chanting over and over; “everything’s spinning and I can’t make it stop.” As if this wasn’t alarming enough, her muscles had all gone into spasms and she couldn’t physically hold her self up. You don’t know fear until you have to lift your best friend into the bath tub and hold her while she balls her eyes out and you help cool down her body temperature. I’d forgotten that there was a douche bag virus living inside of my best friend, trying to kill her. And it was scary.  So please, Doctor, stranger, friend, family member, acquaintance… Don’t you dare tell my best friend she’s “fine”.

4. QUESTIONS ARE WELCOME
        If you see us sassily walking (and rolling) through the shops, or an art gallery or a café, don’t be scared to ask her about her disease. Mia (and I) would love nothing more than to answer any questions you might have about why she’s in a wheelchair, or why she’s so pale. (Kidding, she’s just white in general.) But seriously, instead of being that person that tries to figure out her issues with your x-ray vision which requires some pretty intense starring, JUST ASK.

5. THIS ONE'S KINDA THE SAME AS NUMBER 1, BUT IT NEEDS REINFORCING. I’M NOT A GOOD FRIEND.
        I’m not sticking around because I have to, or because I’m a good friend or a saint or I’m a narcissist that likes fixing other people. I’M HERE BECAUSE I LOVE MIA UNCONDITIALLY JUST LIKE SHE LOVES ME UNCONDITIALLY. Just because you can’t see her physically pushing me in a wheelchair, doesn’t mean she’s not pushing me emotionally in one, just as much as I’m pushing her.  It also doesn’t mean that my love for her is somehow greater or more than her love for me. Mia puts up with far more crap from me than she’s ever put me through. And yet, no one is singing her praises from the rooftops and demanding that she receives a knighthood. Why? Because most people just see her chair and make assumptions. And that makes me really sad. Because the point is not I’m a hero for sticking around, or she’s an inspiration for fighting Lyme disease. The point is there is a crippling disease running rampant in Australia that everyone seems to not be too concerned with because its not affecting them, or any one they love. And that’s just not good enough.

        I’m hoping that another perspective on Lyme will educate you a little bit more on why this is such a huge thing. And why it's so outrageous that it's still so unknown. Please, spend some time talking to your friends about it, getting educated on it, and sharing it.
        Some famous dead guy once said: “Any fool can know. The point is to understand.” And I hope one day we all understand a little bit more.