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.