Three days after my 40th Birthday I received the call that affirmed what my body had been telling me for many years – something was seriously wrong. The call from my neurologist was short and straight to the point as he stated ‘I am shocked as your MRI scan is not normal’. I on the other hand was not as shocked and in fact somewhat relieved. Finally an explanation for the fatigue that plagued me and why I couldn’t walk the distances I once had without my legs feeling strangely heavy. This was the beginning of my MS journey eight years ago.
More tests followed – scans, spinal tap, more neurologists, registration with the MS society and finally a visit from the MS nurse to teach me how to self-inject. If I had any doubt before to the reality of how I got to this point, the treatment certainly cemented my diagnoses as I adjusted to all the side effects. This included feeling like I had a perpetual flu. The year that followed was a blur as I soldiered on with work while nursing flu like symptoms daily and experienced several MS relapses. Then came the frequent hospital visits as I received steroid infusions in the hope of advancing recovery time. Once the drugs kicked in I would return to work and expend all my precious energy in maintaining my role as team leader for a children’s counselling program. After work I would crawl into bed with crippling fatigue. I’d sleep until 7 pm; wake, have dinner, go back to bed and do it all again the next day.
In the years that followed my list of symptoms accumulated with each relapse. In no particular order or duration I experienced intermittent blurred vision, tremor in the hand then legs, spasticity all over, bladder frequency, relentless fatigue, spasticity of the vocal cords, gait changes, neuropathic pain and some cognitive issues. Not only did my list of symptom expand so did my care team. I now had a multi-disciplinary team of professionals which included a hand therapist, neuro physiotherapist, speech pathologist and occupational therapy in making home and work adjustments to accommodate the new person I was morphing into due to this insidious unpredictable disease.
As I began to feel like a shadow of my former self, I emotionally coped by trying to normalise my life resisting the temptation to give up anything that made up my world prior to the MS. I mealy made adjustments on the peripheral of my life such as reducing my work days from 5 days to 4 then 3 and then the amount of hours I worked in a day. As foster carers my husband and I changed our status to only care for older children and on our annual holiday I dragged myself around China for two months in order to prove this disease was not the master of my destiny. If I just kept going all would be okay. It was during this bleak period a wheelchair seemed inevitable and the realisation that my current ‘game plan’ was not working in my best interest. And just as my world began to crumble a new treatment emerged called Tysabri.
I attended the hospital once a month for my Tysabri infusion with hope in my heart and finally but slowly the relapses reduced and I even began to make some gains. Although most of my symptoms remained the wheelchair didn’t seem as eminent as it once did. The cane was used less frequently and I finally realised self-care had to be put on the agenda. As difficult as it was I made the decision to resign from my position and now do consultancy work, leaving me with more time to accommodate my symptoms and family life. I now look forward to the future with even newer drugs emerging through research and perhaps even a life where dare I say never requiring a wheelchair and freedom from symptoms. That’s the dream.
Colleen and Kate Curran · 4 May 2015 at 5:32 pm
Wishing you success with your endeavour. Belinda from the Shire of Campaspe contacted me to let me know about this amazing challenge you are taking on.
Kate and Matthew Curran and Jacinta Woolfe are 3 of my children and they also have MS as did my Dad Colin Lee.
We have participated in the walk at Albert Park each year and Matthew always dresses as a viking, not hard to see if you have ever been there.
Last year we ran a walking/cycling event in Rochester to raise awareness and funds for MS, this year we will once more be doing Rochester Pedal 4 MS on the 8th November and then 2nd Sunday of November each year.
let us know when you will be in Echuca we will come and cheer you on.
Dianne · 5 May 2015 at 6:32 pm
Thank you deeply for your very kind words of support and inspiration regarding our upcoming adventures. Lovely to hear from another kindred spirit who’s family understand the struggles of living with MS. Wow three family members with MS and not to mention your father. Seems to certainly indicate some genetics at play!
Colleen we would love to meet with you all as we make it to Echuca. Perhaps we could even share a coffee in town as I would imagine getting off the boat in the larger towns will be a treat.
Colleen I will stay in touch during our preparations & let you know of our timetable once the route is complete.
Again thank you for making contact & wishing your family all the best until we make contact again.
Chloe · 12 May 2015 at 2:48 pm
Have a nice trip Dianne and good luck
Dianne Yoong · 12 May 2015 at 3:06 pm
Thank you Chloe. I hope you follow our trip darling. Its great to see that you have visited our website x
Gerardine Mangan · 15 May 2015 at 12:35 pm
Dianne…from our friendship over a number of years I know that you have the tenacity to make this dream of completing the “Source to Sea” on the Murray river come to fruition. You are someone to be admired and respected because of all you have achieved despite the burden of MS…I wish you well in the challenge of the Murray River Expedition and look forward to hearing about your experiences – no doubt they will be colorful and exciting because of who you are!!!
Jasmine · 25 May 2015 at 4:05 pm
I believe in you ?
Rita · 18 October 2015 at 1:57 pm
Dianne you are honestly the most determined person I have ever met. I hope everything just gets better from this point. Xxx
Dianne Yoong · 18 October 2015 at 4:27 pm
Thank you so much Rita for your lovely words. I was deeply touched darling & I hope we can arrange a catch up when I get home. Miss you xx
MelKazlauskas · 6 November 2015 at 6:55 am
Hi Dianne “Go girl”I Hope the weather gets better.Have a great trip
Dianne Yoong · 6 November 2015 at 7:01 am
Thanks Mel, hoping after today for sunshine!!
David Laing · 5 December 2015 at 12:14 am
Your visit to the Murray Bridge RSL last night was a real eye opener for many of our patrons about your fight with MS.
Our local community is very generous with their support of others less fortunate, and I hope your “rattling of the tins” gained a bit of gold for your quest.
You are a true inspiration to others, and I know you won’t let this terrible condition get you down!
Well down and keep up the fight. We’re right behind you!
All the best.
David & the other service veterans
Murray Bridge RSL