I told my story at the first Australian NMO conference last week. To be honest, to get up and share the worst times of your life with a bunch of strangers is very tough. Luckily, I was amongst people who understand. I got to be in a room with a HEAP of people like me. We all got to share stories, we heard from the specialists and most amazingly, we were reassured that the research is happening and achieving some pretty cool results. So there’s a positive.
I was worried about speaking and telling my story and guilty that I was lucky enough to improve when others weren’t. And now I’m going to share it all with you. This is a snippet of my story focusing on the positive. The aim was to talk about adapting after illness. Here Goes..
I’m going to start with a quote from Helen Keller:
“Although the world if full of suffering, it is also full of the overcoming of it”
When I first noticed some strange symptoms, I was 28, fit and working as a remote area emergency nurse. I was situated on a tiny island in Papua New Guinea. The company I worked for also coordinated air retrievals. I knew how complicated it was to medically evacuate someone. For this reason I told no one I was unwell.
By the time I got home, my whole left side was affected. I was left handed and I couldn’t hold a pen in my hand.
They told me a had tumefactive MS because my lesions were large and unusual looking. When I was told about 6 months later that it wasn’t MS, but probably NMO, all I could remember was being told earlier, ” if it’s not MS, it’s universally worse. ”
What on Earth is NMO???
I was scared.
A counsellor from the MS society asked me: “who is Jess? Describe yourself in 3 points”
I thought carefully about this.
- I am a remote area emergency nurse
- I play volleyball in the WA Superleague.
- I love to travel and mountain bike with Clint.
And I cried, all these things seemed impossible now.
I would have cried everyday for 6 months. But I had promised to work on these 3 things.
I found an old notepad at home. I started writing (scribbling as it were), at least 3 hours a day. I focused on my right hand. I was going to become right handed…
AND I DID.
After about 7 months, I started working again a few days a week. It was not what I expected. It was an incredibly boring job, but one that I could do. I was exhausted and grumpy. I focused on simple nursing skills, like taking a manual blood pressure or pulse with my right hand.
As I improved, I had a few different jobs, until the right one. I now work for the very company I talked about before. I give medical advise to remote places and I am a liaison for an air retrieval service for our unwell clients.
It’s not the same job I had before, it’s a great compromise though.
My second point was my sport. When I first got sick I had unrealistic expectations. I went to boot camp at my local park everyday. It was a waste of time. I fell over a lot, was covered in bruises and didn’t improve.
I knew I had to start smaller. I found a physio who does individualised yoga programs. We worked on my balance and proprioception and then strength. It was a slow process. Eventually, the program improved every aspect of my physical health, and in turn, my mental health also.
I now play volleyball and netball in the WA superleague. I am not in the top team anymore…. and I don’t care!
My 3rd point was my relationship with Clint. Shortly after I got sick Clint took me to Kangaroo Island.
I walked up a set of stairs.
IT WAS A EVERYTHING!
After a lot of time, practice, patience and bruises, Clint and I started mountain biking together again. We even did the Gibb River Challenge; a 700km team mountain biking event through remote Western Australia.
Unfortunately, shortly after this, Clint had an accident off his bike.
He is now a paraplegic.
It has not been easy. I am Clint’s carer/ he is mine. Now we play golf together and we go on dates to physio together. We even made it to Melbourne this weekend only 3 months since his discharge from rehab!
We don’t know what will happen in the future, no one does. We don’t know how we’ll manage if/when I have another relapse. But we’ve both learnt how to adapt.
If I can suggest anything to the people in this room today, it would be to start small, take baby steps and celebrate each and every one of the smallest wins.
I’m going to finish with a quote from my hero, the late Stephen Hawking:
“no matter how hard life may seem, there is always something you can do and succeed at”
And that’s it, a very condensed version of my story.
You’ve probably noticed that I haven’t written for a while….
Update in a nutshell….
Clint was very sick
He had some rare complications following his last surgery. He was faced with an impossible decision. To have surgery to help a complication, or to wait and see what will happen. Both came with potential catastrophic outcomes. He was an absolute trouper though it all. And we chose not to have to surgery. So far, it seems we chose wisely. Go us!
So he came home about 3 months ago and we have been bombarded with medical appointments. I may have also neglected my own shit during his hospital time so I am catching up on appointments too (like a good patient). So if I’ve been off the radar recently, that’s why.
Things are starting to normalise now (or normal for us I guess), so I’m back! And planning our next adventure. Clint is planning to abseil down the QV1 building (crazy!), I’m planning a more relaxing, wine drinking, bush retreat getaway for the two of us 🙂