The Waiting – April-May – Where have I been?

How far are you willing to drive after the low fuel indicator light comes on? How low do you let your mobile phone battery go before you know you absolutely have to plug it in before it shuts down on its own? Do you turn on “battery saver” and eke out a few more minutes of work and conversation before you finally go find somewhere to recharge?

Ever since a little mosquito bit me and changed my life forever nearly four years ago, I’ve been living with ‘low battery’. Unless you’ve experienced post viral fatigue syndrome, or ME/CFS if you suffer long enough, you will never know the unrelenting exhaustion it causes. You may think you know, because you have felt exhausted before, but no, you don’t really know.  With this sort of exhaustion, it is not relieved by a good night’s sleep. You never EVER get a ‘full charge’. In fact, it’s worse than that. It’s that frustrating situation where you leave your phone on charge all night, only to wake up and find the percentage charge has not increased at all!

So I’ve been wandering around with unrelenting fatigue and an unpleasant and somewhat lengthy list of neuro-immune issues for some time now. This translates into a dysfunctional immune system which then resulted in picking up another infection, just as I was starting to feel a teeny bit better in early 2019.

That infection, bartonella, has caused me more issues than the mozzie virus. It is in a family of vector-borne illnesses that often accompany lyme disease. However, in that cluster of diseases, which also includes babesia and rickettsia, bartonella is known to be the most difficult to get into remission, even more difficult than chronic lyme. If you don’t get bartonella treated quickly and it goes chronic, it is going to be a very tough road to remission. And, of course, you’ve got no chance of recharging your battery until you get that bastard under control.

You do not want a whole bunch of these in your blood vessels and tissues!

And so, through four years of $12,000+ worth of medical tests, procedures, treatments, medications and dashed hopes, I’ve continued to work. The job I started in December 2019 requires much more thinking than the previous job I had. Thinking requires energy. My low battery has just kept getting lower with this job.

Then, between July and September 2020, I worked waaaaaaay too many hours on a project with a strict deadline and totally crashed my health again. This was compounded by being at home all the time, for leisure AND work, because of COVID restrictions. It just so happened that the house I was spending nearly 24 hours a day within was poisoning me with mould toxins and multiple heavy metals in the drinking water.

Since then, my low battery has fallen to critical levels. I engaged the battery saver feature by getting a medical certificate and trying to work fewer hours at work. But the mould toxin issue was not solved by moving house, getting out of the mouldy environment and trying to essentially, ‘air myself out’.  Therefore, my doctor invoked the Shoemaker Protocol. This involves taking a cholesterol drug off-label (not a statin) to bind the mycotoxins and excrete them, so they don’t keep re-circulating between your liver and bloodstream.

That all sounds good, right?  This is what I need to turn off the battery saver and recharge again, right?

 Well, if you sorta wondered where I’ve been for all of April and May…. well, it was trying to deal with work craziness while surviving the side effects of that binding medication. Even with a medical certificate, I found I just could not reduce my work hours. I just couldn’t get all the work done in less time.  And the side effects of the medication have been very rough. I have all of the common side effects and half of the serious ones. In practice, it means I’m extremely nauseous and get a splitting headache for approximately three hours after taking that vile stuff twice a day. It also does terrible things to digestion, which I struggle enough with anyway!

So the binding medication I started in April was the last straw. I have to take the medication for six months. It is rotten. One work day in early May was particularly ridiculous and had me in tears of frustration and anger by the end. I work from home still, so no one saw the camel’s back breaking. I’d had enough. The type and amount of work I do, while trying to deal with the medication side effects and no energy was just too much. I could no longer survive on the last dregs of battery saver.

The realization was difficult, though, because I have an amazing boss who has been super-supportive of me and my medical issues. We have had an awesome little team of four that I really enjoyed working with – and I hated the thought of letting everyone down. However, further medical advice cemented the decision and I put in my resignation last week. My last day of work is 22 June.

The funny thing about getting a virus and not recovering is that you all of a sudden meet lots of people who have experienced this themselves, or know someone who has. The mosquito viruses, other vector-borne diseases and glandular fever are all pretty notorious for causing post-viral syndromes in around 10-15% of cases. All of the people who identify as having “long-COVID” are now just treading down a well-trodden path – millions of people have already been down that exact same path with other infections.

If you meet people who have eventually achieved and sustained a decent level of recovery, they will all tell you that you need to take 6-12 months off work and just rest. Take the load off the immune system so it can heal. Getting the immune system back to normal is the key to getting well. I’ve received this advice from quite a few people who have experience with post-viral syndromes.

And so, I’m finally financially comfortable enough, and exhausted enough, to take that advice.

As my energy levels flag, I always feel like there is this critical warning for my battery levels saying, “PLUG IT IN! PLUG IT IN!” and it makes me think of this Simpsons episode 🙂

OK, Em, shut up about the health stuff. I don’t come here for that, you say.

Sorry. But I wanted to document how we got to this point and how it leads to the next chapter and future posts – if not for you… for me.

So what are my plans?

First plan is to sleep. And sleep some more. As much as my body wants. For the first time in four years, the amount of rest I get will be dictated by my body instead of my commitments. For late June, July and August, my only plans are to lay around, sleep and ride my bike short distances.

Remembering that this is winter in Oz, and I do live in a place that does get somewhat cold and whose wet season is in winter, there may just be a lot of time curled up in bed doing nothing at all. However, on the nice days, I plan to ride up to the dam which is about 13 kms away. I’ll then just nap up there in the sun instead. 26kms of riding and plenty of napping.

Heal, immune system, heal.

I also think it will take a while to just unwind and not feel like I have to do anything productive in a day. This period allows that.

Then, if my body says it is ready, I’m thinking of doing a ride from September to December. This tour will be very low key with low daily kms and probably as many rest days as ride days. Being outside will help me heal and help continue to get rid of the mould. Being on the bike is the best and fastest mental health healer for me, so gentle pedaling in new places should help in that area. And sleeping in the tent in the bush has got to be one of the healthiest things I can do for me (if I don’t get insect or spider bites, of course!!).  I always sleep better in the tent!  So a slow, gentle tour to continue healing is the plan now. See an embryo idea of a route below – subject to much change, of course!

Potential route for a ride Sept-December. To place yourself geographically, you can see part of Sydney on the far right. Albury, and the NSW border, is at the bottom/ cut off from image. Route goes clockwise from the bottom (Albury) out on the flat bits first and then up to Dubbo (have always wanted to ride the Animals on Bikes sculpture tour between Molong and Dubbo), and then down to Bathurst. I would need to be in Bathurst in mid-November to meet Nigel to see him drive the race car again. He had so much fun last year, he’s signed up to go again. After Bathurst, it is just working my way back home by mid-late December. Besides Nigel’s Bathurst drive, the other reason to do a tour in NSW is that I have a NSW driver’s licence and want to be in that state, so when my turn comes for the vaccine, I’ll be able to book in to get a shot (you have to get it in your state of residence). I hope my turn comes up before Sept, but if not, this will give me the best chance of being able to book in.

Late December and January will likely be spent at home. It’s just too hot in January to want to tour much, and everywhere is crowded with families on school holidays then, too. I also need that time to make some decisions about the next steps. My lease is up in mid-February. Do I give up the lease and hit the road full-time for a while?  Or do I renew the lease for six months and find some part-time work? January will give me time to action that either way.

I’ve been playing with this route for some time. If I decide to give up the unit lease, this could be the next loop. I hope I’d be vaccinated by this point. See Melbourne at bottom. Route starts top right and goes counter-clockwise. The yellow bit shows the one bit of the Grampians I’ve not yet explored, so maybe I’d add that in. The blue line is a possible extension to go do the Black Range and Murrindindi Scenic Reserve south of Yea. The swirly red bits represent riding around on the bits of the Strathbogies I’ve not yet ridden. This ride just connects a whole lot of ‘green bits’, i.e. forests and state and national parks I’ve never explored.

While I’m here, I must give one very important update. In the second week of May, I stopped taking the vile medication for a week, and did the 7-hour drive to Merimbula on the NSW South Coast.

Short Point Beach at Merimbula.

My old neighbour and cycling friend, Don – who nearly died in a car accident at Christmas, is now living in Merimbula at a super-fabulous retirement home with amazing views of the coastline. He moved there to be close to his remaining family.

Don in 2017 on a ride to Tallangatta.

Five months out from the accident and you’d never know anything had happened to him. He was walking just fine, only using a walking stick for balance. He could get in and out of my car with no troubles, and his mental acuity is the same as before the accident. He had more energy than me!  

It has been a truly remarkable recovery, particularly since any of his long list of injuries could have killed him. He spent 21 days in an induced coma, had a cracked sternum, several fractured vertebrae, seven broken ribs, an arm ripped out of its socket and now held on by wires, reconstructive surgery to part of his face, and multiple internal injuries. He had to learn to stand and walk again – all at 82-years-old. And he says he has no pain or any lasting issues – other than being old!

Don in May 2021 at the Pambula River mouth.

We spent the week eating our way through the cafes in all the nearby coastal towns, chatting and touring the region. He is at peace that his biking days over – it’s much too hilly where he lives for casual riding and his balance is no longer so good. But I am grateful for his friendship and am so relieved that he has landed in such a good place. I hope to go over to visit again in September before taking off on the bike (if my body says yes to any or all of that!).

The guys got some floating in at the caravan park pool while I was out with Don.
The whole crew got to go on holiday – my 36-year-old teddy bear Sebastian, his friend Berry that my mom sent over in 2003 to keep my bear company, Verne, Kermit, Car Ernie, and Statler the sea turtle who normally stays at Nigel’s house but wanted to go to the beach!

So if I don’t update this journal in a while, just know that I’m sleeping, resting and healing. I’ll be up at the dam napping in the sun, doing a jigsaw puzzle that I haven’t gotten around to in the past 1.5 years, reading a book or two, or maybe…. getting things together to go on a slow, healing tour.

My list of items to research and purchase is fairly long: evaporative cooling medication bag for my fridge meds; maps; mini-trangia stove, solar panel and power bank, laptop or tablet, new front and rear blinkie lights, and other stuff I know I’m forgetting here!

And of course, because I’m one of those “achiever” personalities, I finally also have a goal to set and achieve. I need to be resting and not doing anything at all, so my goal is pretty simple and should also help me heal. It’s called “Outside Every Day”. From 23 June until the end of the year, the goal is to spend at least 30 minutes outside every day. That can just be sitting in the sun, walking to the shops or going for a bike ride. Just get my butt outside in fresh air at least 30 minutes every single day.

So until later, know that soon I will FINALLY plug back in, turn off the battery saver and hope to finally start to recharge!!!!!

15 thoughts on “The Waiting – April-May – Where have I been?

  • Good to hear from you. I was wondering how you’re doing. Those plans sound good! Finally all the rest your body needs. Better days are coming.

    • Thank you, Suzanne. I hope spring has brought great weather for riding and it is turning into a beautiful summer there!

  • For sure, I was one of those people who were wondering where you’ve been. Thanks for this update. Recharge those batteries and hopefully you’ll come back stronger than ever. Good job with The Simpsons selection. The Simpsons (and Itchy & Scratchy) are always a great source of comical inspiration. Hope to hear more from you soon.

    • Thanks, Greg. I haven’t seen the Simpsons in many years, but it was certainly very clever back in the day. This is my fav one:

      I don’t know about the coming back better than ever. The general thought is that anyone over about 30 with post-viral issues – let alone the other crap – will never make a 100% recovery. But 85% is achievable, so I am hoping/aiming for that. That level would certainly still mean I could tour mostly in the ways that I like.

      Once I finish up the job and have more time and energy for something other than work, I’ll get back over to cycle365 – I’ve missed your humour and wonder what Storm Chaser Greg has gotten up to lately.

  • Lovely to hear from you and I am so pleased that you are able to take the break from work you need. Hooray for you!! Maybe we could meet up with you in Bathurst – there is still a once a day train from Sydney 😉

    • Great to hear from you, too! I hope all is well, you’ve got good, interesting and challenging work and everyone is healthy. The Bathurst race day is 15 November. There’s a possibility of actually going to Sydney before or after (for Nige to visit family). I get my first Pfizer shot next week and will be fully vaccinated by end of July, so I’m thinking I might do that Victorian loop first in Sept/Oct. I might not ride to Bathurst, but do a much bigger ride in NSW from Feb if I’m recovering well. But should I be coming close to Sydney in any of it, I’ll get in touch, and I’ll let you know what Bathurst plans end up being. It would be great to meet you and your partner in person!

      • We are fine. I had the first AZ about a month ago and Malcolm had his yesterday, so in 2-3 months we too should be fully vaccinated. An excellent milestone to reach 😉
        Sounds great to have some flexibility with your travel! Let us know how your plans develop. I assume you know the Minerals Museum in Bathurst? If not, make sure you check it out. (The railway museum also worth a look depending on your level of trainspotter!).
        Look forward to reading about your travels if you write them up. Your journals are great!

  • hi emily! i hope you are enjoying your period of recuperation, which is well deserved after a hellacious string of years. my wife was afflicted for a quarter-century with chronic migraine headaches, just in the past year or so brought mostly under control. your description of taking meds that made you nauseous and gave you a severe headache while trying to work was horrifying. as you decided, it is time for a break. you have a well thought-out plan and i’m glad you have the finances to make it possible. and as someone who likes structure, i appreciate how your new plan is to go outside for 30 minutes a day. one must have goals, after all. when i go for a bike ride, i have a mileage goal or a plan to ride a particular circuit or visit a particular spot, or what’s the point?
    good to hear you’re getting the covid vaccine. it was a bit liberating for me to get vaccinated.
    fwiw, in the eastern u.s., it seems there are two news stories from australia: 1, doing/not doing fabulously against covid-19, and 2, the mouse plague. for new zealand, there is only one story: ab fab vs covid.
    best wishes for recovery.

    • Hi Chuck – thanks for taking the time to write a comment! I hope all is well for you there and you are really enjoying the summer. It is good to hear that your wife has finally had relief from the migraines. I’ve had 4 of them in my life (I get visual aura beforehand so always know what’s up!) and so know how painful and debilitating they are – but I absolutely cannot imagine having them regularly for so long. I cannot imagine the pain and frustration. Best wishes to her for continued control and further improvement.

      My 30 min outside every day goal has been working, even though we are having a really rainy winter so far (which is a good thing!) and so I have to manage it between showers, etc. Last winter was really dry so would have been much easier!

      I get my second Pfizer shot on Friday so won’t be tied to either VIC or NSW for a tour in spring. However, those nasty meds may have caused more trouble than I thought. I was very right in quitting work when I did, because I’ve been fairly miserable since then. I go in for an ultrasound on Monday as a first step to figure out why I’m having so much pain, nausea, etc. Sounds like it may be ulcers or gallstones. Every time I think I’ve turned the corner….. So depending on what that turns out to be and what the treatment is will determine when/where I go ride. BUT I WILL GO RIDE.

      Yes, Oz has done a spectacular job of suppressing the virus but dead-ranked last of top 50 OECD nations in the vaccine roll-out. The fed gov has been abysmal in acquiring and distributing the good mRNA vaccines. Sydney has a pretty good outbreak going at the moment because they locked down too late in the most recent outbreak. They are sort of our version of Texas – livelihoods over lives. Victoria and all of the other states and territories really learned from Melbourne’s big outbreak last August, and they all do hard, strict lockdowns if/when the virus escapes from hotel quarantine. They tend to get it under control quite quickly. But NSW has been pretty smug about doing light lockdowns and they are paying for it now! And then of course, we all get angry because so few of us have had the opportunity to be vaccinated because the fed gov put all of their money into the cheapest option (Astra Zeneca) and didn’t have a Plan B when that one turned out to be a bit of a dud. We were doing spectacular – now… not so much! I jumped at the first opportunity to get the vaccine when I became eligible though – so I’ve done what I can personally.

      Enjoy the summer green over your way for me. Hope you’ve got some fun rides planned for the rest of summer.

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