Bed with a view

It’s been no secret that my health has been declining this past year and we’re not 100% sure why. There were more days in bed, days where I skipped showers, weeks where I didn’t wash my hair; times mum had to help me get changed. And while my physical body was failing me, my mental state was taking a hard hit. A lot of people turned to us and put it down to depression. “She just needs to get out of bed” “If only she stopped diving the headaches would stop” But we knew there was something else going on beyond chiari and my brain hanging down too low. Brain surgery had helped for a short while, and then I was on a cocktail of medications for that. But I was still in pain.

So with the input of my neurologist we saw an immunologist and what seemed like half my blood was drawn for tests to be ran. And the result was an anti-ku antibody. If you’ve been reading for a while you’ll know about this guy and how he affects my joints. How it makes it hard for me to get out of bed because most days it feels as if my knees are being pulled from their sockets and my hips torn from their joints. How one day my lungs could start to be more effected then they already are and their function decrease. At the moment it only shows up on tests and I don’t notice any difference in day-to-day life, but this was all going on without me knowing. And yet, if only I had stopped diving huh?

But something had to be done to get me out of the same old routine of doctors, blood draws and tests, and mums theory “if you’re going to be stuck in bed, I’m going to make it a bed with a view”.

So here’s our plan: we’re packing up the house, putting everything in storage, and taking to the road so I’m not confined to the four walls of the house and my mum and sister can get a taste of adventure. We all have the desire to travel and we’re convinced there’s some gypsy blood in our veins! I’ve wanted to go out and see the world ever since I left school, and it was always my plan, but for obvious health reasons I couldn’t so here’s our opportunity to. We’re going to take our time and enjoy everything that this country has to offer. We’ve been able to support three different rugby teams, but have never actually explored any of the countries that we lived in, so for once we are finally going to do just that! As for work, we’ll pick fruit, work on farms, stay in one place for a couple months and then when another opportunity comes up we can leave. That’s what this is about, giving ourselves the power of deciding where to go and when.

The burning question that I’m sure you’re all wondering: my health. When we put this idea to my immunologist his first response “can I come with you?” He is all for it and is more then happy to have appointments over the phone. My monthly blood tests can be taken at any pathology lab and results can be sent to him and all my other doctors (all 3 of them), and if anything is seriously wrong there are hospitals all over the country and I can always fly back for appointments. Nothing is too far away. Medications can be adjusted on the road, and if scripts need to be changed I can make an appointment with a local GP and get them to fill it out for me. Thankfully over the past few months I have become quite close with the phlebotomist who works at the lab where I currently go every month and I’ve told her about our plans and she has helped me with what I’ve needed in regards to referrals and has even offered to write up order forms for me before I leave, just so I’ll have some spare incase something goes wrong. I guess it pays to be stuck with a needle and have two vials of blood drawn every month!

We need to do this. The past month things have been hectic, shit hit the fan and we got told we had to move out of the house and it just reinforced how right this all felt. Each day I wake up and eat breakfast just to take my meds, I go to work to make coffee for people who expect me to know their orders and don’t say thank you, I come home with no energy, and eat dinner just to take more medication. That’s not how I want to keep on going through my days, so a change had to be made, and this is that change. Sure there will still be my medication that I have to take to correct the mistakes that my body shouldn’t be making, but if I have to take it so I can stand in front of Ayres Rock at sunrise with minimal pain, then I’m okay with that. I can handle the fact that I’m on a low dose chemo treatment, or that I’m on steroids and I’ve got moon-face and my cheeks make me look like a chipmunk. I can handle it all.

I know I’ll still have my bad days, those are inevitable and I’m not completely naive enough to think that this would be the answer to life’s problems, if only it was. And this might completely fail and in six months we have to come home because I just can’t handle it. The thing I’ve learnt over the past year of being chronically ill is that my body is unpredictable, and I have to take each day as it comes. Each morning I assess where I’m at. What level of pain I’m in, how much energy do I have, what can I do today? This trip will be taken from those days. We’ll get up and see what I can do. And who knows, this may not work out, we just don’t know but we’re going to try. 

Call us crazy, call us insane, god knows we’ve called ourselves that over the past few weeks as we talked over the plan. And what is the plan? We don’t really know! But boxes have been packed and put into storage, the motor home has been loaded with clothes, and Kai is ready to go. Yes, we’re taking the cat. So the petrol tank is full and we’re heading out on the road for the next adventure, an adventure that for once is in our hands and our control. We might be back in 6 months or a year, but you’ll find updates on this blog and more frequent updates on instagram: @chronicallysurviving for day to day updates or @jordyvon95 so check back in with us, and well see you soon! Maybe.