Boulevarde Dreaming

Tuesday 19^th 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