Apparently I promised a post last night after a homemade espresso martini, 2 red wines and a White Russian (with milk, not cream). So here it is...and it's long, so strap in...
Today is the final day of my favourite season, AUTUMN! And what a great place to be, in the Nation's Capital...M and I wandered the National Arboretum yesterday and it was lovely.
A hell of a lot has happened since my last post - where do I start?
- I got really sick (NOT Mad Sascha sick)
- I was offered (and accepted) a permanent teaching job in a PRIMARY special school
- We were officially posted to the ACT and had a horrendous case manager
- Australia had an unprecedented and HORRIFIC bushfire season
- COVID-19 made its presence known, globally
Then there are the little bits in-between.
In very early November, I became really unwell. It started when I had a trip to Melbourne to catch up with the sis. The weather was a bit nuts and my flight got postponed to a MUCH later time...I somehow managed to get on an earlier flight which was grand! However, Mother Nature had her way and that earlier flight was delayed. After rushing home from work, getting a Shebah to the airport, finding out the flight was delayed, trying not to drink too much, I finally arrived after a pretty bumpy trip. I felt exhausted.
We managed to head out onto Lygon Street for a late night Italian meal - it was delish! The next day I struggled. My fingers hurt. My nails on my fingers hurt. I felt, again, very lethargic, like that next level tired, but not quite MS fatigue tired (that is an outta control tired). But I seemed to soldier on okay.
I had an awful flight home. I was in tears, but not sobbing tears, just quiet ones. I survived with Uncle Valium and Aunty Bubbles in my insides.
The Monday night I developed a fever. I had had my Tysabri infusion that day too. I felt awful. I had no other symptoms except the fever and I felt shit. No sore throat. No cough. No runny nose. No other sickie symptoms. I proper felt sick like I never had before.
I went to the doctors on 5/11, 7/11, 14/11 and 5/12.
I had 7 seperate blood tests from the 5/11 to the 6/12.
I had a chest x-ray.
I had an ultrasound on my abdomen.
I even went to Emergency at some ridiculous early morning hour because I was still experiencing fever 5 days later. It was insane. All I wanted was to feel normal. I just thought to myself, if this is how it's gonna be, then I do not want this.
What was wrong with me? Well there was no definitive answer. And this does not surprise me. I know that in the medical world, all they can tell you is what it is NOT. And even then, nothing is a sure thing.
My chest X-ray showed things...so it was said I may have an 'atypical chest infection'...like, as in pneumonia you say? Well yeah but nah, because remember, I had no other symptoms, no respiratory symptoms. I did have some laboured breathing with reduced lung capacity. WTF!?
Once I gained some improvement, as in no fever, I continued to feel ill. I wasn't hungry. My tummy was sensitive. It was a pain I hadn't experienced before. It wasn't a question of pooing or spewing...it was just feeling sick. This is where I went to see the doc again. I got some kind of blood test to test a maker of some kind and it wasn't the best. So I had several of these blood tests over a few weeks.
I actually experienced a flare up from Mad Sascha. Due to the fever and being so unwell, I experienced some extra MS symptoms...I began to get some pins and needles in my right hand and arm. Luckily these are were only temporary. Nevertheless, they still sucked. These bastards hung around a few days before finally dissipating.
I gradually got better. THANK FUCK. It was honestly the sickest I had ever felt in my life. And that is a big call. If you read my post about how unwell I was after I had my tonsils out, I was pretty darn sick then, but for some reason I viewed that quite differently. That was pain. This was also pain, but I think I had the view that I would defo get better after the tonsils came out (and the rest of the stuff old mate cut out), but when there is no name to what I had this time the impending doom began and I questioned if it would be forever, or even, if this could be the end? Anyone else ever experienced this bizarre quandary?
My GP was amazing. She called me a few times a week to give me the blood test results and simply check in. I miss her.
Funny thing...the day I went into Emergency, I got my job offer! I said yes, even though it was not certain we would be posted to the ACT! I thought, "Hey, I can maybe stay with mum and drive and M will come later" - this did not happen thank goodness because the drive would have near killed me.
Fast forward a few weeks into December and M gets the confirmation we were after - our posting! It was a MAD rush to sort everything. We luckily got some amazing tenants for our house. We had to book little Frida in for a flight - little bit nerve-racking with the heat etc. but it was all fine.
In-between that, we had prematurely booked a short trip to the ACT to spend some time on the coast then see mum, who resides a little way out of Canberra, for Christmas. What a smokey, scary mess! We arrived in Canberra, jumped in our hire car keen for some beach times. Checked the roads constantly on the apps, but as we drove through Nerriga, this ute in front of us pulled a semi-dramatic 180 and said, "Sorry, road closed". This was the start of some serious fucked up shit. It took us about 6 hours to drive to our coastal destination (with some places we were lucky to actually drive through!), where it was very smokey...the whole time. There was a period where we were on alert to watch for embers. It brought back a lot of memories growing up in the Blue Mountains as a young person. I would remember mum packing the photo albums, passports and some small suitcases then sending us to mama's. I also remember needing to show my licence to drive up the mountain as it was open for residence only. Little did we know the sheer devastation that had happened already (we saw a bit of this on our drive), what was happening and come New Years Eve, what was going to happen.
We enjoyed our coastal stay as best we could and then it was time to drive to mum's for Christmas. We stopped in the beautiful little town of Mogo for some obligatory fudge purchasing and a little wander. It was smokey as. Some old bag was having a go at a couple of kids on their bikes riding on the main drag. I lol-ed - they're just kids lady, c'mon! I remember walking past the Local Aboriginal Land Council building and admiring the artwork displayed out the front. Not long after, I saw the exact same building in ruins from fire across the media. I teared up a little. We were just there! How can this happen? I know...that fucking wind. It's the killer (along with a myriad of other things).
We eventually made it back to the ACT and enjoyed more smokey weather. Oh well.
Back to our relocation...we had one massive issue. Our c**t of a case manager. She was an A1 bitch. I won't fully go into it, because we already have in our formal complaint. I secured a property privately - only to have M reveal the same day, literally 30 mins after, that a suitable DHA property was available to us. As we were driving into Wagga Wagga (a town so good they named it twice) DHA said the place wouldn't be ready, so offered us a different one that would be ready sooner.
Then COVID19. What?!
I had heard about this virus that some people were concerned about sometime in December, around Christmas I reckon.
It feels like we are gonna be okay, but getting used to constant change across all aspects if life has been a challenge for sure. I was pretty concerned about how my MS and meds might affect my risk of contracting COVID19. I have been assured I am at a very low risk as my medication, Tysabri, only suppresses the immunity of my brain and spine...if that makes any sense? No, me either.
I have to say I DEARLY miss the nurses who look after me in S.A for my infusions. The Canberra system is a flop. Seriously. I have different nurses each time and one time they wanted to let me go straight after the infusion. The protocol is that you are observed for an hour due to the risk of PML - remember that rare brain infection that you can get because your brain and spine are immunosuppressed, and you can become severely disabled or die from it? The chick was like "But you said you've had this medication for like 5 years?" What a fucking idiot. Can I trust these twats to do their job? The first time I went I was there for 4 hours!!! I was the last soul there!
One time...one nurse was faffing about and proclaimed "Sometimes I don't even know what I am doing!?" 😳 I wanted to say, "Well, I have been sitting here for 30 minutes with no cannula so, do you need me to tell you what to do luv?", instead I laughed uncomfortably through gritted teeth.
I feel very anxious each time I go. My first 4 infusions, they needed to try more than once to get my vein. Fortunately the last time I went, I got a lovely nurse who went and got someone experienced to do my difficult cannulation, and this all happened in the first 15 minutes of arriving - bravo!
I DO respect nurses, but my experiences prior have been a bit rubbish. Or am I just a nurse snob?
Oh and I also had my yearly MRI which the neurologist called me to give me results, as no appointment would be made during this COVID19 business. Apparently the scans were fine. No changes...I think? He did ask me why I did not have contrast. Funny that, as his minion is the one that wrote the bloody referral. So again, my confidence in this system here is not great.
I may be missing S.A a little. Only like 1000 sleeps to go.
I could ramble on but I think I have said enough for now...
