Settling In

It's about seven years in, since diagnosed and you are stable on Tysabri. At the time of your last relapse, where disease activity was identified on your spinal chord, you were one of the first hundred-odd (88th to be precise) that were admitted on Tysabri. Six-monthly screening tests for JC-Virus have come and gone, you are consistently negative. The risks of PML sit more and more in the rear view mirror.

It is here that life makes more sense. You have your monthly infusion, all the stress and anxiety around injecting is gone. You're happy that the nurses administer the drugs to you. You get about 2 hours a month of rest, peace and quiet. You can relax.

The regularity is welcomed. You are in a routine of still working full time, fitting in your infusions and otherwise leading a healthy person's life. You're engaged, you and your fiancee have bought a second investment property. You're doing everything that you thought you ought to be, and wanted to be doing.

Each morning at about 7am the doggies wake up and shake their heads, which sets off a tinkle of their collars. That wakes you both up. A hurriedly downed cup of chamomile tea and a quick fumble for some loose change and within about five minutes, off you four go (me, fiancee, Billie the ridgeback and Marley the staffy). You are off out for our morning walk.

We round the heads at Ben Buckler and the deep blue Pacific Ocean is staring at us. No shadow of a lie, whales breach and its not uncommon to see the odd dolphin. Despite anything that's going on in my little head, this here, this is absolute peace.

We stroll up to a lesser known coffee shop, selected for the quick service and minimal crowds. As we approach the counter my tiny coffee is ready, Leigh's normal size is on its way. We put the exact coins on the bench, nod to the man behind the counter and off we go.

We walk along Bondi promenade, up the stairs passed Icebergs, and around to Tamarama. Very rarely do we make it to Bronte as before we get there, once all the crowds have passed we let the doggies off their leads. There is a rock pool here - this is Billie's favourite place in the country. She's been with me from West to East coast, and we've lived in lots of beach-side towns. This rockpool is her absolute favourite. So despite setting off as though we'd make it to Bronte, we instead happily visit this rockpool.

Billie swims around fishing for imaginary fish. Marley runs around back and forth. Not a keen swimmer but loves the game of trying to catch Billie, as if trying to coax her out. We stay there for a long time. Every morning. Leighroy talks a bout his day and I babble about nothings. We do this every day for years. We do this until old, aging Billie cant make it that far anymore.

We still leave the house each morning but we settle at the sea pool at North Bondi rocks on the opposite side of Billie's favourite rock pool, its on the side of Bondi bay our house is. So Billie can still swim here and fish for her imaginary fishies, and the old girl still has enough left in the tank to climb up the stairs to home. Marley still speeds around back and forth, very rarely getting wet but having the best morning chasing his mate Billie around.

We have the same morning routine. Us four. Our little family. It really is peace.

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Fast-forward five years and things are different. We're married now , we don't live in Bondi anymore, we spend some of our time at our house in Byron, and the more time than we'd expected at our place in Sydney. The dogs have both left us for heaven, we travel more now for work and play than we don't.

Wherever we are, jet-lagged or plainly suburban, we get up, get a coffee and go for our morning walk. Trips to Sydney to visit my medical team, trips to Melbourne for work, trips to London for family, trips to a tropical island for a break, trips to the snow for me to shred just as hard and just as fast as everyone else. Trips for work, trips to see old friends, trips just for us. The one shred of routine we've held on to, is our morning walks. This ritual is one simple, unwitting source of stability for me.

One thing Multiple Sclerosis can guarantee, is change. When you get adjusted to one treatment, one hospital, one type of life, things change. Its often for the better, but set backs that spur improvements to treatment based on medical advances, can sometimes be a six monthly conversation.

It wasn't until we had decided to take up a new project in the city (Sydney), and we'd been on the road for various reasons already for about three weeks, visiting family overseas and what have you, and we were living in a hotel and had a clear stretch of the same bed for at least ten days (#hectic), that I realised how important any semblance of routine really can be. It honestly made me feel so comforted that despite what night terrors I was inflicted with, in the morning, coffee would be available from 5am if need be (Surry Hills, time is money people! The day starts very early on this edge of the CBD). Coffee would be hot and comforting, my husband would be with me, we would both be upright, breathing, seeing, walking and talking together. And again, you find your peace.

There will be a patch, hopefully a very long patch, in your medical history for which you are very stable. For me it was Tysabri, it was my late 20's early 30's. And we did normal stuff. We got married, we elevated our careers. We traveled, bought houses, had amazing date nights at Australia's finest. We were just like everyone else, my illness was an after thought.

This will be you as well, there will be a patch in your journey where stability sets you up for a simple routine. Rest assured, whatever you do in this time, you will come to cling to it when nothing else is the same anymore. Having this reminder of what your stable phase was, will make you feel at ease. The night terrors aren't so terrifying, knowing that your little version of routine/ stability, it will be there in the morning. Like me, you probably wont know it at the time, but that is the irony of hindsight. Whatever routine you find yourself in during that patch of remission, you will return to again. And it'll be the simplest thing that brings you the most joy. You'll be reminded of normality and stability.

Rely on it, it really is peace xx