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.

Curiosity is Key

Ok so first things first. I am so sorry it's taken me so long to get back on here, I've been trying so hard to think of something to tell you guys that might actually be helpful for you and I think I've finally got something. This one is a bit hard for me to write about but it's also something close to my heart and that has affected me a lot in my own health journey.

Over my time being sick I've met a lot of other sick people, some who have been sick for much longer than I've been alive. I can't even imagine the heartache that would bring, six years is about all I can take before I give up. And that's what I wanted to write about today. When people stop fighting, do you judge them? Or do you ask them what they've been through and try to understand?

As long as we're being honest I have to admit I have done my own bit of judging other people for 'giving up' but I've grown through that and tried to learn what it is that makes them not want to try any more, and after years of trying to figure out how someone could stop trying to beat this thing inside them that has completely taken over their life, I finally got it. Not because of others experiences but because I wanted so much to hit that spot myself. I wanted to give up and just let my illness dictate my life. It was a scary place to be and one I thought I'd never be in, I also knew that if I stopped fighting then I wouldn't actually be living, I would simply exist and I didn't want to just exist so what was the point of being alive? I'm not saying I was suicidal, but I finally understood the desperateness of the situation that unfortunately far to many people find themselves in. I'm sorry if I'm making you feel uncomfortable guys but pretty please stay with me on this one.

Actually the reason I haven't been back on here since I've been back is because I have been metaphorically and literally stamping my feet and refusing to keep fighting over the last few weeks. About two weeks after I got back from my three months in America I found myself sitting on my bathroom floor, my hair only half washed because I physically could not lift my arms to wash it any more and I said to my parents between sobs 'I can't do this any more'. All I wanted to do was crawl into my bed, pull the doona over my head and not face any of my problems ever again. I felt alone in my fight. And this is where curiosity comes in. Even in that space all anyone had to do to pull me out of it was say 'Hey, how are you?' And actually mean it. I think a lot of people are scared to ask a chronically ill person how they're feeling because they might offend them or their answer might make both parties uncomfortable. But really you asking that question is pretty much like you're saying 'I'm on your team. I've got you.'

So if you're thinking to yourself 'Mia, surely it can't be that easy.' Well I'm pretty sure it is. It could just be me... But of all the sick people out there in the same position surely there is someone like me who just needs people to be genuine and caring. And I totally believe that we live in a world full of genuine and caring people. So go on, be curious. You could change that persons day, or you could even pull them up and help them believe that they can get through this.

Past treatments and current treatment.

So sorry I've taken so long to write this new post but I'm a bit of an avoider when it comes to new changes, I'm a bit of a control freak.
So today I thought I'd tell you abut the treatments I've done in the past and the treatment I am about to start all the way in America! Freaky stuff right?! First off I want to say that this is not an index of what works and what doesn't, just because it didn't work for me doesn't mean it doesn't work at all, and I hope if you're endevouring in any of the treaments I talk about that they're successful for you :)

So at the beginning of my journey with illness I went to a few different natruopaths, I totally believe in natural therapies and that they can totally work but in my case these treatments were for symptoms and not the route cause which didn't work out for me.

After a few months of natruopaths, we saught out a CFS specialist to find out if that was what I had and if he thought he could help me. Don was very helpful and there was a definate improvment in my symptoms after the treatment plan he gave me but after a while I wanted to go somewhere else as I never believed I had CFS. But the treatment involved daily B12 injections, drugs for orthostatic intolerance, vitamin D, an electrolyte replacement, probiotics and other changing minerals and vitamins throughout the treatment. I was also on a very restricted diet of no fructose, dairy or gluten and also organic. I stuck to this diet pretty much throughout the six years I've been unwell.

After this treatment I didn't recieve any treatment for about a little less than a year until I became much worse after a pretty horrible year for me emotionally. It was then I found an out patient program run from a hospital not too far away that ran for 8 weeks and consisted of Cognitive Behavioural Therapy combined with a graded exercise program.

After that I went to a different doctor who worked along side a natruopath. With them I started a regime of homeopathic doses of antibiotics another strict diet and again ever changing vitimins. I did this for about 9 months.

Then I went back to the CFS doctor and started the same treatment as before, and it was around this time I was tested for Lyme disease and we began searching for treatments that have had good results for others.
I went to a doctor of Chinese medicine who treated me with vitamin C, glutathione, B12, and heaps of other things and this treatment worked pretty well for me, I went through a detox and we aimed to prepare my body for the trip ahead. 
So this is where we come to the America thing! The treatment I'll be going through is specific to me but I'll try and give you a general overview. It is 95% natural treatment and 5% antibiotics, I'll do genitic tests aswell as other tests and will then begin treatment. I'll be having an IV drip twice a day that is actually a proprietary blend. This treatment has a 93% success rate or something like that so I'm so hoping I'll be a part of that statistic!   

So yeah that's what I've done in the past and what I hope will work for me in the very near future.

Oh so you're just like, tired all the time?

No. Just no. For six years now that has been the question asked, over and over again. I know that it isn't the persons fault they just don't know enough to understand... but that doesn't mean I haven't wanted to hit some people out of frustration. So I just wanted to give a general over view into the symptoms of a typical Lyme disease/ originally thought to be CFS and Fybromyalga/ anxiety prone person.  This is by no means what every person with these diseases or syndromes goes through it is just a simple explanation of some  of the symptoms experienced by me personally and possibly others similar to me.
So pretty much I am tierd all of the time, but it isn't normal tired, it's a tired that can never be fixed by a good nights sleep (what even is that?) or by a quick nap. Have you ever been so over tired that you couldn't actually get to sleep easily? It feels like that but when you do actually sleep you wake up feeling worse than when you went to bed the night before. It is a constant cycle each and every day, and this is usually accompanied by restless and broken sleep for most CFS and Lyme sufferers.
Along with the tiredness there is pain. The type of pain and severity of pain varies dramatically from person to person but pain is something that is invisible in itself which in turn makes it pretty hard to generalise.
Sooo.. with that in mind this is only my own personal account of pain that I feel and live with every day. My pain is chronic, I've had headaches every day for 6 years, they vary from day to day, from small headaches that are no big deal, to blinding migraines that leave me in bed for a day with every blind in the house closed and my family speaking in whispers (those poor people).
I have constant muscle aches that I can only discribe as feeling like my muscles are being ripped apart slowly under my skin. It hurts to walk, sit, stand and lie down. You get used to it after a while but there are peaks and troughs and sometimes it is unbearable. And although I try, usually there are no amount of pain killers that will help. Joint pain is also prominent and is said to be very similar to the pain caused by arthritis.
I generally feel weak. I can't really think of any other way to describe it. My muscles over the years have deconditioned and my body can't handle anything strenuous, or not strenuous actually. Walking from my bedroom to the loungeroom is difficult and if I go out anywhere (which doesn't happen often) I have to be in a wheelchair.
Although all of these symptoms are pretty horrible 'brain fog' is probably the one I hate the most. I've always been a pretty academic person and learning and pushing myself to learn new things and do my best have always been things I've enjoyed. My brain however seemed to be one of Lyme disease's first points of attack. Pretty much every day I struggle with what can only be described as 'brain fog', it's pretty much like someone has come along, put a blanket over my brain and told it to be quiet and go to sleep. Which is a giant pain in the butt for someone trying their hardest to complete VCE. Most of the time I find it difficult to think of the words I'm trying to communicate with, I have no idea how many times over the years I've said 'Um what's that word?' This is probably the symptom that is hardest to describe, but pretty much at around 4 in the afternoon my brain refuses to work. I can no longer understand what it is I was trying to read, or I find it very difficult to express to mum or dad how I'm feeling or simply have a conversation because words are difficult to come by. Some days I wake up like this and my parents have to read out my school work to me over and over again until I understand or they have to read it themselves and then tell me in a way that is easier for me to understand. It's annoying but slowly I get there. Most days... which leads me to my final point.
The isolating effects of all of these symptoms are horrendous. My dad very creatively calls it 'medically induced solitary confinement'. Because I'm no longer able to actually attend school the people I see on a regular basis are my parents, my best friend and doctors. I know it isn't an actual symptom of Lyme disease but it is a result of the others and it is not a fun time. It's lonely and sometimes I just have to allow myself to hate what Lyme disease has done to me and hate the way I have to live because of it. But then I move on and pick up my good attitude that I throw on the ground like a three year old having a tantrum, stuff happens. 

Isolation and Ignorance.

So these are two of my least favourite words and unfortunately they are very closely related (for me anyway.. anyone else?). There was an article in the paper today on Lyme and how the Australian government doesn't recognise its existence in Australia. Obviously I know it exists in Australia.... where else would I have got it considering I haven't been overseas? I've walked into doctors offices and had them look at my blood test results and tell me it isn't true, I'm either lying or it's all in my head. Ouch. The ignorance of the Australian health department and doctors hurts, yes, but to me it doesn't compare to the isolation felt due to the absolute isolating nature of Lyme disease.

As it is an illness that isn’t very well known it’s extremely hard for people to understand what it’s like to live with every day. People usually only see you when you’re having an okay day and have possibly put on some make-up or simply people seeing you smile may lead them to think everything is ok. I am by no means blaming anyone for my feelings of isolation, I’m simply stating how I feel. The actual symptoms of Lyme are isolating in themselves, I know personally I’m usually unable to go anywhere and if I do I’m in a wheelchair. For an 18 year old (and I’m sure for all ages) being house bound drives you absolutely crazy. One frustrating thing for me is coming to an age where I have my licence and I’m legally and adult, and yet most of the time I can’t drive at all and I definitely don’t feel like an adult when I have to rely on my parents to pretty much do everything for me, cook, drive, help with school work, sometimes even having to help me walk from the lounge room to my room.

I’ve found myself becoming very angry with nobody in particular, mostly just the situation I find myself in, (being totally isolated, loosing friends, being sick and having a really annoying health department) but then I think... why be angry? Where is that going to get me? Wouldn’t I be much better off possibly connecting with a group of people who know what I’m going through such as Lyme or CFS support sites and what not? (this is a bit of a touchy subject with me but I’m learning). Also I may have lost friends but I still have a select few that are totally willing to help me out when I’m feeling completely cut off from the world. And I have an amazing family who love and support me in anything. So what right do I have to not ask for help? Especially when they offer.

Don’t get me wrong, if you have feelings whether it be anger, sadness, frustration etc. I’m absolutely all for letting yourself feel them and then move on. But I’ve decided to reach out to those around me and ask for help (something my A type personality has never been good at) and I think it’s going to be really good for me.

But I realise not everyone has been equally blessed with support around them, and if you’re reading this and feel that way there are others in the same boat, and being one of them I know I’m willing to help so I’m sure others will be too. (that sounded totally lame but I hope you get my gist)

So that’s my half complaining/ half trying to be supportive rant over.

What's this all about?

Hi my names Mia I'm an 18 year old girl and I have been diagnosed with Lyme disease. I've googled Lyme and all I've come across is a lot of very technical and factual sites and nothing to tell me what it's actually like from someone who has it. Not someone saying "this is what I did to fix it and you should do it too" (I know they're all good intentions but after a while it gets grating) just an honest account of emotions, symptoms and some encouragement and love so you know it's not always bad. 

Before I get into a bit of my back story I would just like to say thank you to anyone reading this. I hope it helps you and if you're suffering from lyme (or any other 'invisible illness') you're not alone and if you just want to know a bit more, thank you for that too. If I can help one person I would be honoured...  And if this only helps me, well... That's cool too! 

So a breif overview of my story.

Five years ago I was just an unassuming, full of energy, never been sick young teen, until I was hit with a bug that would just not quit. Before this point I had never been to a doctors and I'd always lived a heathly organic lifestyle (thanks mum!) and then i became very sick very quickly with what doctors told me must have been Glandula fever and another virus of very similar nature, (even though these viruses didn't show up as active in my system at the time) and then six months later there had been no change for the better, only the worse. My mum has a beautiful friend Wendy who suffers from Cronic Fatigue Syndrome (CFS) and she noticed a lot of the same symptoms in me that she saw in her. So in 2009, the year after I first became sick, I was diagnosed with Cronic Fatigue Syndrome. 2008 and 2009 were all a bit the same, I was mostly unable to sleep, couldn't consentrate in school and was going through a never ending series of doctors appointments. 2010 some of my symptoms improved and then 2011 was the start of the worst three years of my life health wise. I began a program for the treatment of CFS that made me so much worse (not blaming the program, just didn't work for me) and then i progressively became worse and worse. I kept bugging my parents and doctors to keep testing me for other things, apart from my CFS specialists I haven't had any other doctors believe that I was sick at all. Either i was making it up or my poor mum had Munchausen syndrome by proxy. During these past three years I was also diagnosed with pretty bad anxiety problems and Fibromyalgia. I still insisted on being tested for more things as I never believed I had CFS. Then finally this year (only a few months ago) was I tested for and diagnosed with Lyme disease. This unfortunately is not recognised as being in Australia and I have not been to another country since I was 8 and I was definately not bitten then. So I've had doctors tell me it isn't true, of course I don't have Lyme (this said while they hold the blood test results saying otherwise in their hand) but that's fine, I know the truth. Unfortunately I have to live with it. 

So that's a general outlook on my background. I'll delve into different things as I go and I hope you join me on my journey and I can encourage you on your own. 

You may feel isolated and like you're fighting alone, but hey.. I'm here too :)