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.

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.

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!

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.

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.

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.

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!

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!).

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!!!!!