Boulevarde Dreaming

Tag: multiple-sclerosis

  • 6). Double vision!! to be honest, X-ray vision would have been more impressive……

    Tuesday 19th September 2017

    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

  • 5). All aboard the Tysabri train

    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.

  • 2). I don’t always get a disease, but when I do there is no cure. Apparently I’m overly dramatic that way.

    Adjusting to being sick

    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