Sliding doors

unexpected road

Many times now I’ve had the opportunity to reflect on the course of my life and the timing of certain events, revelations, frustrations and breakthroughs. In the About section of this blog I mention flippantly how I try to derive meaning from everything, but if I’m perfectly honest without the bravado this is one of my number one coping strategies. The day I stop trying to draw meaning, purpose and growth from what otherwise might objectively look like a pretty shitty hand to be dealt, then I’m done for.

It’s pretty simple what has kept me going:

  1. Loving support from other people in my life
  2. Rabid curiosity – unwilling to accept ‘it just is’ as an answer to questions. Taking responsibility for my healing alongside my healthcare team
  3. Belief that life isn’t meant to be cruisy and challenges ultimately fortify us – though at times the extent of the challenge has stretched me to my brink of sanity
  4. Connection with other people sharing my experience of chronic illness – I liken this to being an employee of a niche field – you talk ‘shop’ with your colleagues because they implicitly know what you’re on about, the same applies for the first-hand experience of chronic illness, particularly one not widely accepted or recognised by medical authorities
  5. Distraction – a funny youtube clip, a movie, hobbies – this is a necessary release valve and seeing as I can no longer drink, exercise, go out dancing on the weekend, or indeed freely leave my home most days, my escape is limited to what I can achieve through my mind/immediate sensory input
  6. Music and aromatherapy – both help me shift my mood – sound and smell …it’s effective and works on the brain at our most primitive level (time out in nature is also amazing but less accessible now I can’t drive so much and am too weak to walk far)
  7. Making a conscious effort to recognise and focus on my good moments and believing they will reoccur, even if it has been many months since the last one
  8. The desire to make something of my life, to not give up, to make my mark positively on the world in some way. Before falling ill I wanted to work in some humanitarian capacity – that part of me still exists but my attention has now turned towards the plight of people suffering with Lyme Disease in particular as it is a worthy and under-supported cause
  9. Laughter – MB makes me laugh on the regular and I also seek out humourous content online and am fortunate to have made friends with some very witty people who share this illness
  10. Spirituality – I believe our bodies are cases for our souls and I believe life is a journey of learning. I believed this before I fell ill and I know not everyone sees life this way but for me it is a huge source of strength and resilience
  11. The desire to see history unfold – I want to be alive when my illness is recognised and the tide of scientific/medical understanding leaps forward. I find this a thrilling prospect and in many ways it is the specific ‘light at the end of the tunnel’ that I’m guiding my life towards.
  12. The care of brave Drs who are willing to think for themselves, follow the ENTIRETY of available scientific literature and not just the dogma of a powerful section of the medical community who are setting the agenda on Lyme Disease

There’s probably stuff I’ve missed in this list but these are the pillars that hold me up.

There have been multiple occasions where coincidences and serendipity have seemed to turn my life completely onto a new track. I only got a Lyme Diagnosis because my long term Dr happened to go on maternity leave, forcing me to look for another Dr – the one who ended up sending my blood to be tested for Borrelia and Co-Infections – a test that came back positive even by the Centres for Disease Control (CDC) standards in the USA which are very strict and were originally designed for surveillance purposes only. At the same time as my Dr was taking leave I made the decision – for the first time in 12 months of illness – to join some online support groups for M.E./CFS (my initial diagnosis when no one could find what was wrong with me) which I’d avoided specifically because I thought being in those groups would bring me down and my plan was to get better – my focus was laserlike and singular: get well. But that decision led to one of those coincidence turning points where someone happened to post a few days after I joined “Please look into Lyme Disease as many of the symptoms cross over with M.E./CFS”. I’d never heard of it before. None of the countless Drs I’d seen in the past 12 months since I’d been so ill I had to quit my job had mentioned those words. Nor had they asked me about any history of tick bite. But as soon as I learned about the tick bite as the cause for this illness I had a lightbulb moment. I grew up in northern NSW living on a rural community for my early years prior to starting school. I ran around climbing trees, always out in nature. I was bitten by lots of things and I recalled one specific tick bite in my scalp because I had a whopping headache that caused me to complain that my head hurt (at the age of 5yrs) and then I remember the tick was found and extracted and life went on.

If only we knew then what we know now – that this tick likely transmitted multiple infections into my body. When I started primary school a few months later and my vision would go blurry, my neck would lock in place to the side so I couldn’t move my head – it was stiff on the right side for many years to the extent that when I learned to ride a bike I couldn’t look over my right side to check the traffic, when I couldn’t stand roundabouts in the car due to motion sickness, when I developed a sudden sensitivity to chemicals complaining frequently about “fumes” when out in the car, when I had repeated headaches, mouth ulcers, night terrors that caused me to run crying in the middle of the night to my mother’s bed, when I had hypoglycemia that caused me to shake if I didn’t eat every hour or so, when I had brain fog that made me seem slow in class…all of this eventually subsided mostly but I was never robust in health again. When I hit puberty I began fainting, my iron levels dropped, I was severely fatigued, my hair started to fall out, I had severe menstrual pain that would leave me sobbing and writhing in pain in a cold sweat on the bathroom floor, I would be so cold I’d rush to the heater as soon as we got home every week night after I finished highschool. The worst of this settled down in a year and then suddenly I had extreme anxiety attacks out of nowhere – severe palpitations that made me think I was having a heart attack, panic attacks that made me afraid to leave home alone out of fear they could strike again at any moment. These too subsided by the end of highschool (these symptoms are commonly associated with the co-infection Bartonella and I now have classic clinical signs of this infection so I’m fairly confident this is what brought these scary symptoms on in my teens) but even in my final years of high school I suffered bouts of inexplicable brain fog and fatigue. Despite all this I worked extra hard and I did well.

I have never been at full vitality since that tick bite. But because I never had an explanation for this I just pushed myself, tried to hide the worst of it and accepted that I just wasn’t ‘like other people’ that I was a bit weaker, a bit more fragile, that I needed more time to recuperate, that I had to watch what I ate and how much sleep I got. Now I feel tremendously sad in a sort of compassionate way for my younger self. I struggled so much in the dark with random ailments. I was so hard on myself so I could try and keep up with my peers. Now rather than seeing myself as fragile I see myself as incredibly strong. I’ve been handicapped by an occult infection (or infections) for most of my life. I wonder what I would’ve achieved had I been at full capacity? It’s hard to fathom. Safe to say I wouldn’t be spending most of my time on a couch at the ripe old age of 30. Thankfully beyond a few patches of cognitive fog, my mind remained sharp until I crashed properly in 2010 and 2011, when my body finally capitulated and my immune system lost the winning upper hand to the infections in my system. Now I know through brain scans that I have a lack of oxygen to my brain that makes it hard to think, to concentrate, to read novels like I used to do avidly. Instead of just thinking I’m a bit vague or stupid I have objective evidence that biological factors are at play. This means more than I can convey for my sense of self. When you have no answers you tend to accept that symptoms are somehow your fault or a personality defect…this is an insidious perspective to hold and I’m pleased to say I don’t carry it now.

I think it’s crazy that in 2016, in Australia, I only got to the root of years (decades even) of health issues through chance. If my Dr hadn’t gone on Maternity leave, if I hadn’t joined that online M.E./CFS group at the time that I did…I don’t know where I’d be. I was starting to get really down by the end of 2012 after a year off work dedicating 110% of my energy to wellness, trying every available therapy conventional or alternative, practicing positive thinking, trying to keep exercising as my body shut down. Despite all my efforts I was getting worse. It wasn’t until I got diagnosed with Lyme Disease and Co-infections and I’d been on treatment with multiple antibiotics for two months that I felt the first inkling of hope. I had a day where I felt 70% better. Despite trying so many other treatments this was the first and only thing to not only stem the tide of ever increasing symptoms but to make me head the other way, to actually feel BETTER. Because of Dr issues I was not able to continue with that effective treatment and it has been a battle every step of the way to get treatment, to afford it, to deal with a medical system that thinks I’m mentally unwell instead of struggling with a really debilitating multi-systemic, immune-compromising infectious illness. And with each additional year I seem to get weaker, to develop new issues. Recently for example my thyroid became clinically hypothyroid where it had been sputtering along doing its best.

I think about other people out there who may have the same illness as me (or similar – we all end up with a varied cocktail of infections depending on what the tick had in its system when it fed on us – one of the reasons testing and treatment are not straightforward) but who have not had the fortune of coincidence and chance on their side to show them what is killing them. Yes I said killing. It may be slow but ultimately this thing corrodes wellbeing until the body is so burdened and dysfunctional you begin to wish you were dead. I’m fortunate despite how ill I am because I know what is making me ill and I’m being treated. I’ve seen some progress but I know it’s a marathon not a sprint and it will take years to gain remission (no known cure as yet) and even then I most likely will have lasting damage that will need to be managed for life. I am in the minority as someone who has obtained a diagnosis and treatment. That’s just crazy. I can’t think about it too much because it breaks my heart.

May is Lyme Awareness Month – this is the 4th year I’ve participated in it and I wonder how many more I’ll see before the truth about this illness gets recognised – that it’s serious, not so hard to get, hard to test for, hard to treat, persists beyond a short course of antibiotics and is spreading like a modern day plague?

Excuse me as I refer back to my list of coping strategies. Over and out.

change gonna come

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