25th September 2017
So after a whirlwind seven weeks since the diagnosis I had now seen my Neurologist more times that I wanted to count, been in hospital twice, been hit with steroids twice and was now spinning towards my second dose of Tysabri.
I was 100% focused on getting well but back at this time I was trying to do this so that I could get back to my full time job. When I think about this now I can see how ridiculous this thinking was. It shows how far I needed to come with my thoughts and with my acceptance of what this diagnosis may mean in the longer term. I really had believed after that first Neurologist appointment that this was going to have a minimal impact on all of our lives.
The Physical Effects
After the initial tingling in my whole right side I was now left with just three fingers on my right hand that still feel like they were being stabbed with razor blades whenever they were touched. The rest of my hand still gets tingly and numb when it’s really cold or if I’m really tired or when I haven’t had enough water to drink. Driving to hospital the first time I felt so sick from the movement and driving home from the second admission I needed to cover one eye to be able to see the road while Dan was driving. I was also experiencing Lhermitte’s sign (pronounced Ler-meets) when I bent my head down. This was a sudden buzzing sensation like an electric shock that goes straight down my spine. I needed to make sure I completely emptied my bladder a couple of times every day as this was a bit sluggish and I was trying to avoid further bladder infections. I also needed to go to the toilet every hour without fail.
I was tired ALL the time, I still felt dizzy (sometimes when I was already lying down) and I was very easily confused by little things that shouldn’t really have kerfuddled me. I could be feeling OK but then within minutes could be completely wiped out and need to go and lie down. I drop things, knock things and spill things.
When I get really tired my legs get clunky and I feel like I’m walking like Frankenstein. I’ve had swallowing issues and had weird numbness in my face and in my mouth. I’ve had chest pains and irregular heartbeats and also really fast heartbeats. I get strange headaches in parts of my head that have never ached before. The list goes on and on. I also understand that I am so in tune with my body now and I seem to notice every twinge and tweak of pain.
This week was Mikayla’s 16th birthday and as the kids had been staying with their Dad they were dropped over for a few hours. It was so nice to see them but I felt so unwell and I was so disappointed that I hadn’t been able to plan anything nice or to buy many presents for her.
The next day lovely Leah dropped in to see me and I also finally got to meet my new local GP. She arranged for me to have an ECG in her office as I had started to have some chest pains. My beautiful Aunt Heaven also came to see me and brought some fresh organic vegetables and fruit and herbs for my OMS diet program.
It was around this time that we started telling people about what was happening for me. I messaged my siblings and let my Aunts and cousins know.
All of this was a blur.
Friday 29th September 2017
We headed back up to St Vincent’s Hospital IBAC for the second dose of Tysabri. Again we were there for the hour for the infusion and then the hour for observation. We decided to try a new sushi restaurant in Darlinghurst and this quickly became our new favourite.
After all of those months of going up every four weeks we have a bit of a routine- in for the infusion (we go up earlier if I need to see my Neuro) then out for lunch then I usually sleep in the car on the way home. We have a quiet, early Friday night then I wake up on Saturday morning feeling like a superhero. I wake up and bounce of bed and go for my walk and then can get out and do the grocery shopping, sometimes I do some gardening or get out on the water. One Saturday morning Dan and his Dad, Andy, were laughing as I got my cossies on for a swim in the lake then because I had seen a blue swimmer crab swimming in front of me I went back up to the house looking for a net. I really thought I might catch that crab in a little net.
I then have a slow Sunday and then, particularly in the first few months, I would be rocked by side effects on the Sunday night.
I was off work from August until late January 2018 so I wasn’t needing to worry about being well enough for work. I had the luxury of being able to take the time to rest when needed.
I started to really love having some time to myself- I can think, I don’t rush things, I can try to be organised (I even signed school notes before they were due!).
I am trying to remind myself to notice things and to slow down. I haven’t slowed for such a long time. I was addicted to busy- too much paperwork and needing to wake up at the crack of dawn to finish things was something that I had a perverse enjoyment of. I don’t miss any of this. I had been putting so much pressure on myself to do too many things and setting expectations which were huge and now I can see that they were unnecessary. My years of overachieving and overdoing things were crazy. It was time for me to refocus, rest and recuperate.
Thanks for visiting,