I will take a break from reminiscing to let you in on where I am now.
My team of professionals includes two Neurologists, an amazing GP, a Chiropractor, a Pharmacist, a Personal Trainer, a Dietician and an Occupational Therapist.
I have had 5 MRI’s, lost count of the number of needles and blood tests, 12 doses of Tysabri,
I have had 2 hospitalisations and lost 20+ kilos.
I have met some amazing people in person and online.
I have seen and heard things that I hadn’t expected to ever hear in my lifetime.
I am loved and in turn I love without holding back.
I am back at work two days every week and I am loving it. I was in danger a few times of getting caught up with the flow and had started thinking about what three days a week might look like. I caught myself in time and I am following the good advice of others to take my time and enjoy the experience of these reduced hours and the balance that this offers me for the rest of my week.
I have read some incredible books – I have started writing a list with descriptions to share later. I have watched documentaries and I have had the chance to connect with people who I would never have otherwise crossed paths with.
I think that in some ways MS has been my best enemy. I was on a path that was not maintainable and I believe now that another health disaster would have hit me eventually.
And maybe that one wouldn’t have been something I could live with.
This year I will relish every candle on my birthday cake and I will be grateful for turning 44. I am now only 7 years younger than my Dad was when he died.
I am reassessing all of my goals and where I am going. Every day is a new day for me of trying to rebalance my body and to find my previous good health and brain power. I will keep writing even though I don’t know if anyone other than me will ever read this.
11th November 2017
So today I feel fine. I feel like me and I am thinking like me.
I just commented to Dan- “I think my MS has gone away”. How crazy that this comes and goes with no predictability or reason.
No headache, no weird aches and pains. I can think clearly and I sat here and typed for two hours.
I walked this morning and then went back to bed for cuddles. I lay in the sun to listen to my meditation and did some washing. I’m drinking a coffee with caffeine and I’m not feeling jittery. I feel 100% fine.
For now.
I know that the physical symptoms come and go and I am always so relieved when they go. But when they are gone I know that they will come back. I have been practicing mindfulness and being in the present and most times this helps me to chase away the angst but there are also times where it lingers. I would never have been sitting here on a Saturday writing if it wasn’t for MS. I have slowed down so much.
My outlook now is so different. I wake up every morning and open my eyes and I am grateful that I can see. No blurry vision, no diplopia (double vision). I stand up and I am grateful that I can feel my feet and that my legs can hold me up. I go to the toilet with ease and am super grateful for this. I go back to my room and get my clothes on to go for my daily walk. I walk every day for 45-60 mins depending on whether I plan to come back and do some weights.
I go outside and put Bonnie on her lead and we walk out to the lake where we head along the cycle path behind our home. I chat to the people that I see- some regulars that I might stop to talk to and some that I casually greet as we pass each other.
On a good day I get out to Boonerah Point and on other days I turn around earlier.
I love the walk home- it is one of my favourite parts of my day and I love seeing our home from across the lake as I turn back to my family. My other favourite parts of the day are drinking my morning smoothie and getting into bed at the end of the day.
I get home and make Dan a cup of tea and then I start my morning ritual. B12 and D3 supplements, 30ml of flaxseed oil and my breakfast smoothie- banana, cacao, almond milk, chia seeds, cacao nibs, ice and water. If I am still hungry I have a slice of grain toast with avocado, sliced tomato and smoked salmon. I am trying to have this regularly now to help me to stabilise my weight.
I have changed to having one coffee every 1-2 days and sometimes if I have noticed that I have been feeling more anxious I make myself a decaf coffee in the plunger instead. I now add a splash of almond milk- long gone are my skinny latte days.
Since starting following the OMS program I have not looked back, I have not contemplated eating something off the program and I feel that I was born to eat and live this way. It all sits so beautifully with me.
I am happy to have changed my lifestyle for my health and I have appreciated something that I read early on- Nothing tastes as good as being able to walk feels. I will do whatever it takes to get through this but I am not fighting it. As George Jelinek, the creator of the OMS program says, “there is enough fighting happening in my body”. Rather I am trying to rebalance my body, to reduce inflammation and to help to give my brain and body the nutrients that they need to restore, re-myelinate and to stay as healthy as possible in the future. My family- my husband and my children will know that I did everything I could and that I tried everything in my control to get well and to stay as healthy as possible.
When Mum died I jumped on the kids trampoline in the afternoons and listened to Florence and the Machine and thought and cried and bounced. Then I went in to cook dinner. I have always had a positive outlook and an unshakeable ability to just get on with things. I also don’t take crap. I have no tolerance for people who don’t/won’t/ can’t offer me the same consistency and respect that I give to them. I have walked away from relationships and from long friendships and I don’t ever look back. It is a stubborn personality trait but has been a very long term protective factor for me. I don’t stay in situations that are not working- I will try and I will work hard on getting through difficulties but I have my limits and I can cut my losses and let go. I am not sure where this came from but I do accept that this is me.
My advice to others is to work to stay connected even when you feel like things are falling apart. Hold on to the people around you who care and are willing to help. If you don’t think they understand- keep explaining. Ask for help. Tell them you love them and that you need them.
I might look like I don’t need people at times but I do. Other times I can be completely independent.
My Boulevarde Dreaming Instagram account for connecting with my MS community has been so incredible for me. It is different being able to have contact with people experiencing the similar craziness as I am- even though MS is often called the snowflake disease as there are so many different signs and symptoms that everyone with a diagnosis has different experiences. We do have some common features and can be very reassuring to talk to others. It can be so hard to share with friends and family about what is happening for me. It is all so strange and unknown to me so it must be really weird being next to me. How could I ever really explain what this craziness feels like?
My children will know that I did everything that I could. That I tried everything in my control to get well and to stay as healthy as possible. I also continue to research what I can do to help them to stay healthy and to avoid an MS diagnosis in their futures. This will always be my legacy to them.
I have had a couple of conversations with people in the past few days where I have explained about MS and have admitted that it is an incurable neurodegenerative disease which often leads to disability. While I am saying this out loud I still can’t believe that this applies to me in any way.
I have read about people meditating in front of vision boards and I don’t think that I need to do this. I have never wavered from seeing my future. I imagine a long, active life for myself.
I will have a future where I can think for myself and where i will be independent and mobile. I would like the opportunity to be able to get older and to age gracefully. I struggle but I will succeed and I will keep going.
The shifting wind, the changing tides, the boats and jet skis, the fishermen, the people riding and walking past. I love it all.
On November 26th 2016 Dan asked me to marry him.
I was surprised- we had been together for 5 years and had settled into some nice patterns. We both had our own homes and would spend time at both. One of my favourite things to do was to pack my bag on a Friday afternoon and head to his place. He would cook and do all the jobs and I felt like I was having a little holiday each fortnight.
Blending two families is tricky. We all have our stories, habits, expectations, routines and goals. These rarely match up on their own- it takes time and effort. My children had experienced the separation and divorce of their parents and were trusting me to keep them safe and protected and the five of us had settled into our own routines together. Having Dan initially start to stay with us changed things and suddenly my attention was divided.
On our engagement day we went out for lunch at Mr Wong in Sydney and he started talking about fresh starts and making things permanent. I sat there thinking ‘OMG- he is going to propose’. Then he didn’t.
He suggested a walk around the harbour and we walked past a band playing and he said we could stop but that he had wanted us to keep walking to a spot where we often went to in the Botanic Garden’s near the Opera House. We sat there for a while chatting and then he did ask me to marry him- then he gave me my beautiful ring. I called his parents and Andy’s response was “About time- welcome to the family”.
So 2017 became the year of our wedding, selling two houses and buying one together. We should have had a baby (our 7th) to keep the themes of new beginnings going! Our speed hump was different. When I first got sick and was suddenly MIA at school one of my colleagues thought I was pregnant. Not surprising since I had gone missing just after returning to school from our honeymoon. My response to him? “I wish”. And it is true, if I knew the universe thought this mix was missing something huge I would happily have had another little one!
When their Dad and I had first separated, the kids and I moved into a unit in Wollongong near the harbour. This felt like a holiday in many ways. We could see the water from our balcony and we were close enough to the beach and to town that we could walk everywhere. After 8 months my rent was going to be increased and my Mum invited us to move back in to my childhood home with her. The plan was to help me to have some time to save up for a deposit for a house. That was late January and then she got sick suddenly and just five weeks later she died on March 4 2013.
She had been being treated for cancer for 3 years and was doing well- even her specialist was surprised to hear that she was gone. He told me that he had thought she would be able to continue with her treatment and live for many more years. This was the saddest part of my life and I am pretty sure I really haven’t dealt with losing my Mum.
By the end of the year I purchased my childhood home from my siblings and had hoped that it would be a place where they would come back to for Christmas and for us to continue to all have a home base connection together. That this hadn’t happened after 4 years was a way that I gave myself permission to sell and to move forward.
We bought our new home after selling one of our homes and before the second was even listed for auction. On a sunny Saturday in May we attended the auction and after a heart stopping race we walked out as the new owners. Daniel cried as he knew this meant changing schools. I was so happy later in the year, at the end of Term 4, when he told me that he was glad we moved and glad that we bought the house. I was so relieved as he had come to this realisation on his own after making friends and seeing the positive changes for himself.
Moving day was locked in for Monday 19th June 2017 and we had packed up both houses and were all ready for the move. Lining three house sales and settlements to happen at the same time is tricky but we managed to get everything sorted. Then Dan’s house sale didn’t settle on the scheduled day and we had weeks of stress and nightmares waiting to see if we needed to put it back on the market. Eventually we decided that our plan was to move out of my house on the day it settled and into Dan’s house. We all packed a suitcase and took the minimum furniture needed. We needed to arrange a delayed settlement on our new home and there were days of unease with us worrying about how we would be financially able to complete the sale.
Finally the purchasers stopped playing around and gave us a settlement day with 48 hours notice. We booked the removalists again and finally we were in.
None of this stress helped me. Around this time I was having headaches every day and I had started telling Dan that I thought I had dementia- I often couldn’t recall conversations and I was forgetting to do routine things. At the time we were putting everything down to stress and even now it would be impossible to differentiate what was stress related and what was MS starting to niggle.
Finding things in my new kitchen? Forget it. So many cupboards and drawers and my daughters had done a great job of unpacking the kitchen so I hadn’t seen where everything was going in the first place. Some mornings I needed extra time to orient myself to where I was and what I needed to do- we had lived in three houses in a 2 week period so surely some of this was to be expected……
Water
I come back to the water. I always have- from my first breakup where I headed to North Wollongong Beach and sat on the sand for hours. I love the flow, the symbolism of cleaning, the views across the water and the possibilities that lie underneath the depths.
We are now living on the lake with amazing waterfront views and I am grateful every time I catch sight of the water. Whether it is the first sighting in the morning or when I walk into the lounge room during the day and the wind has shifted, or late at night when the lights are twinkling across the lake. I feel safe here and I feel connected to our home. Dan and I have talked about how we both instantly felt like this was home as soon as we moved in.
We had been talking about living on the water and when we had started talking about the possibilities it had seemed out of our reach. Then we started to look seriously at the property market and what the reality of us selling both homes might look like. This was a huge change. I had gone from being fiercely independent and being proud of this. I had gotten to a position where I knew I could protect my children-I was working full time and running a part time private psychology practice and my steady income was our safety net. I was now choosing to let someone else into this. People around me noticed this and commented on the healing that was involved in this- I was able to trust another person and in doing this I was letting go of past hurt and able to trust that this person wouldn’t hurt me. It’s been great and I’m glad I let him in.
So after a whirlwind seven weeks since the diagnosis I had 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% focussed 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 our lives.
After the initial tingling in my whole right side I was now left with just three fingers 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 the second time 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.
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 my daughter’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 a friend 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.
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 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 these 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 morning Dan and his Dad were laughing as I came inside to get my cossies on to go for a swim in the lake then because I had seen a blue swimmer crab swimming in front of me I went 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 and 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 now. 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.
I was sitting on our back deck in the morning watching the birds flying past in pairs and didn’t think anything strange was going on. It wasn’t until I saw identical twins riding past on their bikes with excellent synchronicity that I realised that I was seeing double. I looked up at the mobile phone tower on nearby Mt Warrigal- yep today there were two. There were also two posts in the water in front of our house where I knew there was only one. It wasn’t too bad inside the house with things up really close- it was more in the longer distance that things were doubled.
Since my first hospitalisation I had already spent weeks at home experiencing odd symptoms- weird aches and pains, crazy dizziness, strange headaches and numb and tingling spots in my body. I now knew to wait 24 hours before worrying too much and for those first few days the double vision came and went. My first conversation with my Neurologist wasn’t until Thursday and we initially agreed to wait to see how I was going on the following Monday. The next day when I woke up the double vision was there all the time and was starting to cause me some grief. Eyes get so tired when they are trying to focus and then my poor little brain was feeling even more frazzled.
I spoke to the Neurologist again on Friday and we agreed that I would go back up to St Vincent’s Private on Sunday for more tests. He was talking about another MRI as well as a lumbar puncture (LP). I had successfully avoided an LP up until now as the first MRI had shown evidence of one prior lesion as well as the current ones and this was all that was needed to show the ‘multiple’ episodes needed for a diagnosis of MS. I later realised that at the time he was more concerned about the dreaded PML. An LP test would show more information about what was happening in my spinal fluid. We eventually agreed that he would wait to see the results from the MRI and then I would only have an LP if absolutely necessary. He did try to sugar coat the procedure a little by telling me about the ultrasound technology that was available to help guide the needle into my spinal fluid. I was never really sold on the idea. A few months down the track when I was having an infusion in the IBAC my Neurologist’s registrar was doing an LP on a patient. Dan and I listened in quiet horror to what was going on over on the other side of the curtain. Hopefully I will continue to avoid this ‘small’ procedure.
I was still struggling with my appetite and I had often cooked something for dinner and felt hungry until I sat down to eat and then I needed to force myself to eat even a little bit.
I was losing weight every day and it wasn’t until hospital visit number 2 when my sister-in-law had come to see me again that when I got out of bed to say goodbye I caught sight of myself in a full length mirror. The mirror had been hidden by a curtain and when I saw the difference in my appearance I was a bit scared and found it very confronting.
The second hospitalisation because of double vision was less luxurious than the first. I was on the other side of the hospital looking out towards a different part of Sydney. I could also see two Centrepoint towers from my hospital bed. They were sitting there together side by side with one slightly higher than the other. One of my Instagram friends, Leigh, posted a picture, just after I was hospitalised, of a painting that she had done which represented her experience with double vision. I loved the way she had been able to express this strange visual difficulty. She later sent me a print of her painting all the way from the US!
I shared a room with another patient, Fleur, and we had a blast. It ended a bit differently to my little tantrum when I first arrived in the room on the Sunday with my head firmly up my own butt and feeling super sorry for myself. (While reading back over this I just asked Dan if he remembered my little dummy spit- not my finest moment!!)
I had arrived at the hospital hoping to have a single room again and was told on admission that I was in a shared room. I was already begrudging the fact that I was back AGAIN and was feeling disheartened. We weren’t sure if these admissions were now going to be frequent occurrences. Two relapses in a three-week period- was this our life now? Up and down to Sydney with weeks at a time in hospital?? I was away from the kids again and it was my daughter’s birthday week so it all felt extra awful. I also knew this time what the side effects were likely to be and I had only just started to feel well again since the first round of steroids.
It’s funny being in hospital just for steroids and tests. I wasn’t really sick enough to need much attention from the nurses but I was feeling scared and generally unwell and my vision difficulties ruled out reading and watching TV for very long. My eyes were so tired! I had each dose of steroids in the morning and then was on my own until regular observation times and the next dose 24 hours later.
When we first walked into the shared room Fleur looked tiny and so unwell on her side of the room and I just walked in and lay on my bed with my back to her and cried. After a little while visitors started coming in to see her and it got noisy in our room. I told Dan to go- it was Sunday afternoon and he had a long drive ahead of him. When he left I called my sister in law to let her know I was back in hospital and then by the time I had dinner and watched some TV it was time for sleep. At this stage I was still exhausted each day by 7pm. I tried to get to sleep but the beeping from the machines in the room drove me nuts for hours and I tried listening to music (I settled on the soundtrack for the musical ‘Wicked’) turned up really loud. Eventually I asked one of the nurses for ear plugs and I managed to fall asleep.
Within 5 minutes of waking up the next morning Fleur and I were great mates. We chatted about a million different things and she was a beautiful person to have the chance to get to know. When her husband Doug came in a few hours later he nearly cried with surprise. Fleur was in hospital for an operation for Trigeminal Neuralgia which is nerve related facial pain. The operation was significant and she had arrived in our shared room just before I had the previous afternoon. She had been in the ICU all week after the delicate operation to unwind nerves from around parts of her brain and behind her ear. Our excited conversation that he walked in on was the first time he had heard her being able to have a conversation in over a year. She had also been having trouble eating and brushing her teeth in this time and she had been avoiding all social contact with people.
This was my first lesson in detaching my head from my own butt. There have now been so many stories that have been shared with me about personal distress and triumphs and it has been very special to listen to people with amazing stories of survival. I am just one of many people who became sick suddenly, received a life shattering diagnosis, are putting everything into recovering and who are learning to take each day- minute by minute.
When my Neuro came in to see me on my first day and asked how I was feeling I laughed and asked which one Dr had asked me that. Less funny to him!!
He did say again, that all of my jokes aside, he was quite concerned about what was happening for me. In the end the results from the MRI showed a few new lesions (again not great) but that none of them were in places in the brain which would cause the diplopia (the medical term for the double vision).
His verdict was that this was ongoing inflammation in my brain causing these issues. The gadolinium dye that I had intravenously during the MRI had lit up many places where the inflammation was still hanging around. He explained that it was like I was recovering from being in a car accident where I had received a traumatic brain injury. I did feel slightly frustrated that it took so many MRI’s, two hospitalisations and two doses of steroids for him to tell me this. The pressure I had been putting on myself to recover and to do things even when it hadn’t felt good had been huge because I had created my own vision of what my recovery should look like.
After the round of steroids was complete I was sent home to recover for a few days before returning to have Tysabri dose #2. My next infusion was planned a little earlier than my scheduled monthly dose to hopefully kick start its effects.
Home again we went.
Recovering from an MS relapse
I knew that I wasn’t OK and that I couldn’t do many things like I usually would.
Hearing that it was like I had received a traumatic brain injury was both devastating and freeing. No wonder I had trouble processing new information, tying my shoelaces and planning normal activities in my day.
I wish that I had been kinder to myself in those early days. I could have:
Asked for more help with planning and finishing tasks
Had more naps!
Not gotten so frustrated with myself
Not tried to have conversations when my brain wasn’t interested in showcasing my conversation skills
Eaten more when I actually felt hungry and not felt the expectation to eat meals- I was losing weight as well as trying to hit nutritional targets and completely losing my appetite in the meantime
Not set time deadlines or targets for when I would be back doing things- this just added unnecessary strain on myself
Taken a larger chunk of time off work so that I wasn’t continually having to accept how crappy I was feeling and to then request more sick leave
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.
I woke up at 4am feeling weird and I lay in bed thinking, for the first time, that maybe I was going to be sicker than I had originally thought. I started doing some online research into living with MS- I am a big fan of Dr Google and I love to read as much information I can find.
Somehow I stumbled across the website for the Overcoming Multiple Sclerosis program (OMS) and I started reading. I got very excited about the early information that I found about the program which consists of diet, exercise, stress management, sunlight, Vitamin D, Omega 3 supplementation (and when needed, medication) and straight away I thought “I can do this!!”.
I sent my lovely Brooke a message to cancel my early morning personal training session, (Lots more about my great PT sessions to come later), and I kept reading.
I thought about staying home to read more but by 7am I decided to get up to go to work and see how my day played out. At this stage we had only told a handful of people about the diagnosis and we had decided that we were not going to make this info public. I was just going to keep up with my usual activities and keep my health issues private- a little different to how things are now!!
As it turned out this would be the last day that I would be able to get up and go to my fulltime school Psychologist job in this school year (in fact I wasn’t able to ever return to any fulltime position). It was also the last day for months that I would be able to drive myself anywhere.
It was a usual busy day at school and I had a meeting with a student and her parent in the last period and so I was the last person to leave the counselling offices. I packed up quickly after the meeting, my daughter came down to my office and we drove home chatting, listening to the radio- just an everyday, normal afternoon.
Wednesday August 30th 2017.
I woke up feeling dizzy and drunk. The room moved when I stood up and when I went to the toilet this was the first time I noticed that my razor, hanging in the shower, wasn’t behaving itself- it was swinging side to side. I called in sick to work and spent the day at home thinking I had a virus. I kept reading about the OMS program and I explained a little to Dan about what I was reading and off he went to go and buy some flaxseed oil (for Omega 3 healthy fats) at the supermarket. I decided it was all worth a go! From this day I started on my plant based, whole food diet with seafood and now 8 years later I haven’t looked back.
Thursday August 31st 2017.
I walked Daniel to school and then tried to get in to see a GP at our local surgery. At this point I still thought I had a virus and that I would just need a few days off from work.
As we had just moved to the area I was a new patient and as I hadn’t previously arranged for my medical records to be sent through I wasn’t able to make an appointment. The receptionist gave me some forms to fill in and told me to contact my previous GP for the information to be sent through. All of these things just seemed way too hard for my frazzled little head and I cried all the way walking home and was a mess by the time I got home. I was having trouble focusing on things and even though I could walk in a straight line I felt like I had drunk a bottle of wine. The world in front of me was swaying and slightly blurry. The effort that focusing took was out of this world. I felt like I was in some weird parallel universe where everything was just a bit off kilter.
When I got home in my distressed little state and Dan saw me, he told me that he thought I was having a relapse. He called my Neurologist’s office and the Dr called Dan back within the hour. The Neurologist agreed that I needed to see him and that it sounded like I needed to be admitted into hospital for a round of steroids and another MRI. (My second MRI in 3 weeks!- remember that first one where I had been thinking that I needed to be able to survive it as I had a thought that I might need more in the future? I sure wasn’t planning to be back in that tunnel so soon.)
Friday 1st September 2017
When I look back at this time now I feel like I basically slept through September and it all started today. We were up at the hospital in the morning and after seeing my Neuro I was admitted into St Vincent’s Private Hospital for 5 days.
I had the MRI in the afternoon- I asked for the eye mask and used my nice slow breathing and I survived the experience again. There are so many places that your mind can go when you are trapped in a confined space with your head clipped into a cage-like coil (you lie down with your head in the bottom half of the coil and they snap the top part in place over your head)- it really adds to the whole claustrophobic effect. I am someone who avoids underground car parks because they feel too confined to me, so the MRI preparation process had me teetering on the edge of panic at times.
Then I was back to my room to wait for my Neuro to give the OK for the steriods to start and off we went for methylprednisolone round #1. During my stay the nurses kept telling me that a huge hunger would kick in while I was on steroids but this never happened. My face got very flushed and I developed a bit of ‘moon face’ but they were my main side effects while I was in hospital. The best side effects though were waiting for me later in the week when I got home.
After the first dose of steroids that afternoon my lovely nurse let me go out for a walk and to get a coffee with Dan. I needed Dan to hold my hand nice and tightly while we walked around the busy streets of Darlinghurst. I was a little wobbly and the whole drunk effect was exacerbated by the stimulation overload of noise, smells, people and the busyness of the city (which I usually love!)
The hospital food to match my new OMS program was amazing and I was eating fresh steamed fish and vegetables, stir fries and fresh fruit. I was also getting used to my almond milk lattes.
It all seemed OK until it was time for Dan to leave me that first night. I was very brave when I said goodbye but then I realised that it was just me alone in my room and it was scary and lonely and so confronting that I was actually quite sick. The unknown about this speedy progress of MS kept me awake for hours.
Black hole sun? Supermassive black hole? Neither Dan or my Neuro thought my suggested song choices were funny.
The next morning Dan returned and my Neuro popped in for a happy little visit. It was the visit that involved what I fondly remember as the ‘Black Hole’ conversation. The Dr explained that yesterday’s MRI showed that there were quite a few new lesions. He explained that he was surprised about this progression and that this wasn’t good news. There were also black holes that had appeared in my brain. Black holes are areas of permanent axon damage where a lesion used to be. They are spots of irreversible brain tissue damage. My poor, poor brain was still copping a continual beating.
Having an MRI showing black holes (plural!!) is not good news! The brain is amazing and can re-route and create new pathways for the messages to travel around but an increased number of black holes can lead to significant problems. I now send a regular shout out to my brain to say thankyou for the ability to keep me going everyday while it has been healing and for it’s ability to find new pathways around damaged nerves and to work to remyelinate these damaged areas.
The Dr explained that it was time to get serious on starting to work on this out of control MS.
The day after I was diagnosed Dan and I headed up to the ER at St Vincent’s Hospital in Sydney as had been suggested by my GP. I had packed my bags for the 5 night stay my GP had been told was expected for me and had arranged for the kids to be with their Dad. We arrived at the ward and handed over the letter from my GP. We didn’t have to wait for too long until I was in a bed with a drip, on a heart monitor and waiting for the Neurologist to come to meet me. (These were the first of numerous ‘needle sticks’ that I would have over the coming months- so many blood tests and infusions and cannulas! I have learnt which are my best veins and which ones only work sometimes. Hand cannulas hurt the most!!)
We waited and waited- and the Neurologist never arrived. Eventually they called him and I was able to speak to him on one of the nurse’s mobile phones. He explained that he didn’t do visits to the hospital on the weekend and it was a misunderstanding between my GP and his registrar that had landed me in hospital in Darlinghurst (two hours from home) on this sunny old Saturday.
He was apologetic and told me that as the numbness had been happening for 3 weeks the steroids wouldn’t help me at this stage. He told me he would be able to see me on Tuesday in his rooms- and then he suggested I go home and enjoy the weekend.
Over the past few years I have often wondered if I had been given the steroids at this time of first diagnosis if this could have stopped the snowball effect of the next few weeks and months. I know now that the side effects from steroids are vile and they have consistently caused a two week period of hell each time I have them. The process of coming down from the high dose leave me in 5 days of hangover-esque blur.
So I was unhooked from the drip and the heart monitor and we headed out to Darlinghurst for the first of many lunches together in a funky little local café. It feels so bizarre looking back at the day. We were alternating between our comfortable normality and the precipice of the new world of chronic illness that was beckoning to us. When we got back home we were a little lost. Yesterday I had received this huge diagnosis and been expecting to see a specialist and to receive some treatment and now here we were back at our quiet home on Saturday night.
We invited Dan’s parents over for coffee the next morning and told them about the diagnosis and that we had been to the hospital but wouldn’t see the Neurologist until Tuesday. Obviously this was a huge shock and one of those conversations that you hope to never have to have.
Dan had gone out in the morning and bought a hammock and later we sat together looking out at the lake and watching people looking carefree as they walked past along the cycle way. My plan for the coming week was to just continue as normal except for Tuesday when we would go back to Sydney together.
And continue as normal I did. I worked each day at school and did 10 hours of supervision sessions over the week. It was a huge week and looking back now I wonder how I had fronted up to work on Monday, let alone battling on throughout the whole week.
Tuesday came around quickly and we drove back up to Darlinghurst and had brunch together in another funky café. Then we went to meet the Neurologist. He looked at my MRI’s- showed us all the lesions and pointed out the areas of accompanying inflammation. It was a little overwhelming and I was a bit wobbly and needed to sit down while he explained all of this.
He did the usual neurological exams. “Touch my finger, then your nose”, watched me walking in a straight line, watched to see how my eyes were focusing and tested my reflexes and the strength of my hands. I explained that I had noticed some improvements with the tingly, numb fingers on my right hand over the past week. He asked about work and I explained all of the hours and tasks I had been getting through in recent weeks. His advice about work was to continue doing my usual work and activities wherever possible.
The Neurologist suggested that we could try a wait and see approach and briefly talked about possible medications to trial. This conversation was so brief and the prospect of medication seemed so far away into the future that he didn’t even give me the glossy brochures that I would eventually become very familiar with. I did have some blood tests, including the test to check whether I was JC virus positive. This turned out to be pretty lucky as the results take three weeks to come in. The blood sample for this test is sent to Denmark for testing. My blood now travels overseas more often than I do!
He stated that he thought we would be able to meet in 6 months to discuss medications which Dan and I thought sounded great. Unfortunately, MS had other plans and we would meet again much sooner than this.
It was just 16 days before we would see him again.
I don’t get sick often. I haven’t thrown up for over ten years, I rarely take Nurofen and while my immune system is now compromised from scary drug Tysabri I haven’t had a sniffle yet this winter. I’m usually as strong as the proverbial ox. Obviously when I do get sick it needs to be a little extraordinary.
I have learnt that you can’t understand how unwell you can feel until it actually happens. I went from rarely catching a cold to being hospitalised in Sydney twice in a three-week period for treatment with high doses of steroids. I can also appreciate how unwell I really was now that I am starting to feel healthier and stronger. I spent months lying on our lounge (more about my little nest later. I love that I’m up and about now!)
I wrote a will one afternoon when I was lying on the lounge feeling dreadful- so much goes on while I look like I’m just sitting quietly. The thoughts, the worries, and the bargaining. Can I please have 10 years of being OK- to get my kids through school and into their adult years. So I will have time to teach them what I need to, so they will be old enough to remember things we did and things that I said. To meet their partners and to tell them boring and embarrassing stories about the kid’s childhoods. Please- 10 years so I can dance at their weddings and meet my grandchildren.
10 years of being well to spend with Dan- to celebrate our 10th wedding anniversary, to travel, to enjoy our life together and to keep building memories. To go bushwalking together, kayaking, to go to fancy restaurants and drink amazing wines.
I am very brave but I am not fearless. I will do what I need to do but I am scared. I do worry that I may get sick and lose my ability to do things for myself but I won’t let this worry stop my progress. I am too stubborn and determined for that.
At times I recognise how ironic that it is my brain that has been so affected. I love my brain!! I have worked hard for the past 20 years to fill it with knowledge and to develop my ideas. Four university degrees- two of them Masters degrees as well as professional Psychology memberships that I have worked so hard for. The HESC debt that I did eventually pay off, the hours of reading, researching and learning about therapeutic strategies. The hundreds of clients that I have helped over the years and the number of supervisees that I have supported in their own early career development.
Things are different now. I am a different person but I am also the same. I feel like I am waking up and coming out of the dark in some ways. I’m not sure if this is a sign that I am recovering and that the fog is clearing or it is new clarity and the need for me to press the refresh button.
Where was I heading back in early August 2017? Lots of work every week and aiming to get our new mortgage paid off quickly? Always looking at extra work and study opportunities- I don’t think I can go back to this. I have a new appreciation for time and the value of each new day and all the possibilities that each day brings. I am open to change. I feel a total push to take time to stop and to focus on my health. I feel like I need to be open and that this is part of accepting that the universe has pelted me and I need to be working out what this means for me and for my little family.
I recognise that there are times where I can’t be as present for others as I have been, I need to learn to be OK with this and I need to reassure my children so that they can see that this doesn’t mean that I care less or love them less. I am just doing the best I can in any moment. There are times where I am not fully aware of what is affecting me, it all feels foggy and I often look back later and can see that I missed something or didn’t say something that I usually would. Things don’t occur to me the way that they used to and it feels like a part of the usual me isn’t there catching myself at those times. Things not occurring to me has been a huge adjustment- I miss things that later seem to have been glaringly obvious. I can be sitting next to someone crying while telling me a story and I don’t realise that they just need a hug. But there are also other times where I still have my intuition and awareness and I can make good decisions for myself.
Part of me wants to get back to doing more work, to be well enough to be there helping others and then part of me wonders what is the bigger picture for me? Have I worked with enough supervisees- helping enough of the next generation of Psychologists? Is it time for me to refocus and think about a new direction? Do I want to be locked back into a workday where time rules me- being in the right place for the right amount of time? I love the flow of my days at the moment but I am not sure that they can really continue in this way forever. Part of it is the recovery process and knowing that there will hopefully be enough progress with time for my next direction to come to me.
My days are full- I go to appointments; I focus on self-care and I read. So much reading. My Kindle library reads like a slightly morbid and very fixated health, healing and survival list! I watch documentaries looking for answers- Is it focusing on gut health? Avoiding meat and dairy? Blended celery juice? A whole food, plant based diet? Exercise, potent medications, meditation, sleep- or a delicate combination of all the above??
My recovery time has been such a cool journey!
I love my weekly lunches with two of my long time friends. So many laughs and so much love.
I love my early morning walks where I chat to all my regular dawn buddies.
I love, love, love my lake view.
I love being home when the kids walk in from school.
I love walking one child to and from school.
I love seeing another child when he pops in for a visit.
I love having coffee breaks and mid week lunches with my husband.
I love not watching the clock.
I am appreciating this time.
Some of my daily meditation practices:
Listening to music
Listening to a guided meditation
Sitting quietly staring at the wall (I’m not kidding)
Catching 5 quiet minutes to myself without racing off to finish a chore
Sitting having a cup of tea in the sun
Letting the water wash over me in the shower- feeling the water wash my day away.
Taking some time to focus on breathing in- 2-3, breathing out- 2-3.
Having a power nap
Writing some notes to myself
Thinking about what I am grateful for today and spending some time reviewing how these experiences really felt
Enjoying each experience while they are happening
Hugging a loved one and enjoying their smell- my children often sniff my hair!!
Thinking about a loved one and messaging them
A gentle yoga session
Walking barefoot across the grass
Diving into the ocean
Lying in bed for an extra few minutes for a cuddle with my husband
I’m sitting at home on my deck overlooking the lake.
It is lovely, but I am not meant to be here.
I am not usually at home at lunchtime on a Tuesday.
This is not my life.
Get me out of here.
I was meant to be working in my usual job as a Psychologist at school today. Seeing students, attending meetings, laughing with my team, talking to staff and having a lunch break where I would eat my sandwich, answer some emails and maybe pop out in the sun for a quick walk around Wollongong Harbour.
I was supposed to finish my workday and then come home where I would see a couple of clients or supervisees in my new, purpose-built office before heading back down the driveway into our new home for dinner with my husband and my children.
I am supposed to be busy with a certain level of hecticness that I was used to and that I had been enjoying.
This is my 9th week of being at home. This wasn’t meant to be how my life goes, but here I am.
There are parts of this that I am loving and parts which break my heart. Parts which bring me joy and parts that I cry about in the shower. So much of what has happened for me is out of my control but my first instinct was to find some parts that I could control. Parts that I could make choices with and to still feel like I was able to be me.
I have been told that I need to find a new normal and to say goodbye to the old me as she doesn’t exist anymore. I don’t know about this. I am still her, but my outlook has changed and my perspective is different.
New normal yes, but I will stick with the original me- Version 2.0.
I like her.
August 2017
I was pretty sure it was MS. I had noticed that the fingers on my right hand were numb and tingly over the past few weeks. I had googled my symptoms and all of the websites kept coming up with MS. The first GP I saw and I raised the possibility of having MS with had me stand on my tiptoes and asked if anyone else in my family had ever had MS. As my answer was no and because I had been able to stay still while I balanced on my toes- he told me that it was unlikely to be MS and for me to come back in two weeks if my symptoms were still there.
A week later my initial symptoms of tingling and numbness in my right hand had spread down my whole right side. On the morning of August 10, 2017, I was shaving under my arms when I realised that my right underarm was completely numb. I couldn’t feel myself dragging the razor under my arm. Kinda scary really!!
My daughter had an appointment with our usual GP that morning and I was able to make an appointment for the GP to also see me. Dr G listened to my story about the spreading numbness in my body, we chatted about some photos of my recent wedding and she gave me an MRI request form. She then called the MRI office and was able to get me in for an appointment on the same day. At the time I wasn’t alarmed at the urgency of having an MRI, I was just grateful that she had listened to me.
I went off to work and did my usual day’s activities- resisting the urge to google MRI’s. I knew vaguely that it was like an X-ray but that I would go into a machine. Looking back I am amazed at how naively I approached this whole day. At 5pm I headed to the local PRP Diagnostic Imaging clinic. I sat calmly waiting to be called and then the technician came out to get me. Let’s call him Dave. I walked through the corridor and he started giving me instructions change out of my clothes for the test.
When I saw the MRI machine I paled instantly. Dave asked if I had taken a sedative. When I replied ‘No’ he stated that ‘this should be fun’. I was wearing a jersey dress and stockings so he asked that when I went to get changed that I take my bra off and just check that anything that I was left wearing didn’t have any metal zippers and then I could leave my dress and stockings on. He explained that I would be more comfortable in my own clothes.
As soon as we walked into the room he handed me an eye mask and when I lay down on the scanner bed he told me to put it on. He talked me through the MRI process and assures me that he would be in contact with me through the speakers to let me know how long each part of the MRI would take. He left the room and I felt the bed move and I knew that I was heading in.
Through parts of the MRI he instructed me to not swallow. Try this at home- spend 2 minutes at a time not being able to swallow and I bet you will fixate on how urgently you need to swallow. I bet you are swallowing right now!
I have been a Psychologist for 18 years and during this time I have been preaching the benefits of deep breathing, relaxation and meditation. I must admit that up until this precise moment I was a complete fraud as I had never really used these techniques for myself. Of course, I believed that they could be helpful and I had sat with clients while we listened to relaxation exercises but hadn’t ever put this into genuine practice this for myself. I had a moment in the MRI machine where I thought to myself- ‘this is now or never’ and I had a passing thought that I might need to have other MRI’s in the future. It all kicked in and I breathed my way through that first MRI experience. Simply focusing on counting my breaths as I slowly breathed in and out. I was in the machine for an hour and a half. I survived.
On my 30 minute drive home I was thinking about the possibility of whether things were about to change for me. Looking back now I wish I could have made that drive and that whole night stretch on forever. These were some of very last real moments of being carefree before the diagnosis.
Friday August 11th 2017 D Day
I had just returned to my desk after lunch (I had eaten my sandwich and had my walk around the harbour) when my phone rang and it was Dr G’s receptionist asking if I could come in to see her today. I made an appointment for the end of the school day.
When I arrived at the office the receptionist told me that I couldn’t have an appointment with the Dr today as it was her day off. One of the other staff said – ‘No Dr G is coming in for this one’.
Oh shit.
We both cried when Dr G told me that the MRI showed 40 lesions on my brain and one on my spinal cord, that I was right and that it was MS. Turns out it was 100% likely that I had MS.
She gave me a referral to a Neurologist in Sydney and told me that he was on call at St Vincent’s Hospital in Sydney over the weekend and that she had spoken to his registrar who suggested that I attend the ER as soon as possible to receive 5 days of steroid treatment. She and I agreed that I would go home and tell my husband, Dan, about what was happening and to then go to hospital early the following morning. She offered to call Dan for me and she also gave me her mobile number to call her over the weekend as needed.
I drove home from the appointment via the PRP clinic to pick up my MRI scan films. It is a miracle that I made it home from this epic journey. Driving yourself to an appointment where you may receive a life changing diagnosis is not recommended. I really didn’t want to go home and tell Dan the results and I ignored his calls on the thirty minute drive as I knew that I couldn’t drive and talk to him about this. He was waiting on the driveway when I drove in and I started crying while telling him that it was MS. He could see that this wasn’t great news but didn’t know much about the disease at the time. I explained that we would need to go to Sydney the next morning. That first conversation and that whole night felt surreal.
Boulevarde Dreaming 