SEPTEMBER 2017
Tuesday 5th September 2017- Day One of Tysabri.
In such a short period of time I had gone from hearing that we could wait and see if I needed medication to suddenly needing to quickly agree on a disease modifying drug (DMD) to trial.
I never did get a chance to closely read the glossy, holiday destination style pamphlets for Tysabri. My Neurologist, Dan and I had a chat (mainly about the possible risks) but also including the hopeful benefits and then I was booked in.
I didn’t really feel that I had much of a choice at the time- the MS seemed like it was spinning out of control and the ongoing damage needed to be stopped. The night before the first infusion I got very panicky and teary when Dan left. A beautiful nurse sat with me, listened to me and reassured me. She was so kind and gentle and her response was exactly what I needed. I was so scared about starting this drug. I had been reading about the risks of PML and the disability that it could cause. It all felt like this situation had escalated so quickly.
A little bit about Progressive Multifocal Leukoencephalopathy (PML).
Yes, it is as bad as it sounds…..
PML is a rare and usually fatal viral disease of the brain, caused by the John Cunningham (JC) virus. Hence the JC virus test that I had at my initial specialist appointment (the blood sample that travelled to Denmark).
The JC virus is harmless except in patients with weakened immune systems due to illness or immunosuppressive medications. The symptoms are tricky as they tend to imitate common MS symptoms such as clumsiness and changes in vision, muscle strength, speech and personality changes. PML has a mortality rate of 30-50% within 6 months and any survivors are left with serious neurological disability. Scary stuff!
Back to the first ‘Tysabri Tuesday’:
The plan for today was for me to be discharged from St Vincent’s private hospital and to go over to the public hospital next door for my first infusion.
My first admission to hospital was memorable-I had just had a huge five days with five doses of steroids, an MRI and the black hole conversation.
It wasn’t all terrible though. Dan visited me every day and we always got out for a walk around Darlinghurst. I also had some lovely visits from friends. While I was in hospital, I told two of my friends about what was happening for me. One was a close work friend and the other was my old school friend after we had started chatting about some posts that she had put on Facebook. And God love them- they both made plans straight away to come to see me in hospital. My beautiful sister-in-law also came with her family and she and I were able to do some chatting while our husbands and my nephews went out exploring. Visitors in hospital are little blessings in an otherwise long and boring day!!! Visitors bring presents too and (sometimes almond milk lattes) and I was grateful for every minute they spent with me.
When we arrived at the IBAC (Immunology and Infectious Diseases Unit) for the infusion on that first day we had no idea of what to expect. What an experience we were in for!!
Before the infusion started, I signed my life away, and before each subsequent infusion I have to check the list of symptoms of PML and agree that I have discussed any new symptoms with my specialist. The list gives me a laugh each time when I need to ask Dan if he has noticed me acting irrationally or being clumsy. (Yes and Yes!- but probably not PML related).
The kindness of the staff that we meet really stands out. They have so much patience with all of their patients who come and go during our two-hour visit. When we were there for that first infusion, they had a volatile and emotionally unstable patient who they gently cared for until he had received his medication, been fed and had been able to be calmed down.
I cried when we arrived. It was so overwhelming- it had already been a massive few days in hospital and now I had arrived for my first Tysabri (Natalizumab) infusion. That drug that was going to be added straight to my precious veins- none of the staff went near it until they were covered with thick purple gloves, a thick purple apron and with a protective eye mask. After two hours (an hour of infusion and an hour of observation) we were free. I felt OK physically and was even starting to get used to the constant cannulas in my veins.
We had lunch in another café in Darlinghurst before heading home. There is a photo of me on Instagram looking shellshocked and with the caption: “Home now- time for some recovery for the rest of the week before I return to work”. I really thought I was heading back to work on Monday!!!!!
Boulevarde Dreaming is born
During my first week in hospital, I spent hours on Facebook and Instagram and I found support groups for people with MS on Facebook. This was also where I found my amazing Instagram community. I decided that I would start a new Instagram account to start linking up with my people. At the time I had no idea how big my group would become. The first contact I found was the amazing Staying Healthy with MS. She was a fantastic first link to all the hundreds of people that I have now found who are from all around the world and are all living with MS. Through my Instagram connections I have found women living near me and I have been able to meet up with a couple. With others who are further away we send kind messages and support to each other from around the world- we keep an eye on each other and give pep talks and even post cool things to each other (through real snail mail!!!). Why boulevarde_dreaming? I just wanted to get home and spent so much time looking through our recent wedding photos and photos of our lake that I made myself feel a little homesick.
What kind of evil superpower is this?
I enjoyed the first couple of days at home resting especially when a close friend came to visit me. I looked like I had been through the ringer and we both acknowledged this. I lay on the lounge while talking to her and I loved the normality of our chat.
I walked with my husband and youngest child to school each day and then by the end of the week we were walking a bit further together each morning. It was all starting to look pretty good.
Friday 8th September 2017
The side effects hit me by 7pm. It started with nausea and chills and I physically shook for a couple of hours. Then the nausea continued- it felt like I was riding waves of nausea, with fatigue and a complete lack of appetite. I lay on the lounge until Sunday afternoon when I finally started to feel better. By this stage I had lost 6 kilos within the past two weeks with the significant changes to my diet and then the evil side effects over the weekend.
And so my nesting phase for recovery began- I spent the next week up and down and in and out of my little nest in the loungeroom. I slept, nibbled on food (mainly fruit) when I could stomach it and I started to watch health documentaries. It was lucky that I started to settle into my space because this would be where I spent the next few months while resting and recovering.
I kept calling into work to say I needed a few more days and then this became the rest of Term 3. I still felt drunk and the world was still on its off kilter lurch. Then just before the school holidays started I developed double vision and we were back to where we started- off to see the wizard again.
More about my nest
When I came home from my first hospital stay I took over the three-seater lounge in our back loungeroom. Our loungeroom has big windows looking straight out to the lake and because it is at the back of the house it feels like a peaceful retreat and separate from the outside noise.
I could see life still happening around me- people walking past on the bike track, birds in the trees and I was close enough to our kitchen to have lots of visits from the kids.
I feel like I spent months living my life remotely from the lounge. I could problem solve an issue at work (even though I was officially on sick leave I was still trying to help to keep things flowing when I could) and I had many phone calls and responded to many emails during this time – often while lying down battling dizziness.
I entertained visitors from my nest and I graciously accepted loving gifts of flowers and organic fruit and vegetables.
I read all the books about healing and health and wellbeing that I could find and I watched so many documentaries. I read and re-read everything that I could about the Overcoming MS (OMS) program and worked so hard to make sure that I was following the seven guidelines as strictly as I could.
I got up in the mornings, went for a little walk, had a shower and then settled back in to get comfortable in my nest. During this time our new lounges arrived, and I was able to upgrade my nest. This was all still during the first 8 weeks of being newlyweds and moving into our new house, so our recently purchased furniture was gradually arriving.
While this time feels like a lifetime ago in many ways, I can still remember how unreal everyday felt and how much uncertainty I felt about where things were heading for me.
Boulevarde Dreaming 