I am writing this today while I am still on a high from yesterday. Its funny how illness changes your perspective about everything. I used to enjoy triathlons before I was unwell. I loved the high, the adrenaline rush at the end while running over the finish line. I used to work on my times and try to improve with each race. Now, it is completely different. I love triathlon because I can. For the time being I CAN swim, ride and run. Maybe in 5 years I’ll be one of the Para triathletes still giving it a go from their wheelchairs. But for now, while I can, I am like everyone else and no one knows any different. While I am running, athletes running along side me encourage… “you are almost there” and they don’t know my struggle. They are completely unaware that I cannot feel my legs, they are oblivious to the fact my arm stopped moving 1km into the run leg. And that’s the way I want it. For now, my body is working enough to finish a triathlon in the open division with everyone else just because I can. This awful disease has already taken so much, it will not take my competitive spirit! Not for now anyway.
Last week I turned 30. There were times when I wasn’t sure I’d make my 30th birthday. Now I’m gearing up for another girls BBQ day for my 40th and 50th. Who knows, maybe I’ll be in the over 60’s triathlon age group still smashing it 🙂 That’s the plan anyway.
Yesterday truly was one of the happiest days I’ve had. I proved to myself I could still do triathlon and then my 15 best gal pals came round and we celebrated with a BBQ and a few cold ones. Looking around at my party I realised just how lucky I am to have such amazing friends. Nothing really compares to a really great girlfriend and I’m blessed with many of them 🙂
So, the plan now? I am waiting on another blood test result. It’s for a special antibody that if positive, will confirm the diagnosis of neuromyeleytis optica. Unfortunately, the test isn’t available in Australia and I’ve been waiting since August for a result. Eventually (they say next month) there will be a result. If positive, I will start chemo in January. If negative, I’ll likely start chemo in May. Initially I was resisting chemotherapy treatment until they had a definite diagnosis. I think now I have accepted that is necessary to avoid another relapse. I’m sure I’ll change my mind when it starts and I feel awful again 🙂 My girlfriends and I are already organising a chemo party at the hospital to make it bearable.
That’s it really, As long as I stay the same and have no more relapses and the antibody test is negative, I don’t need to see the specialist again until May. In May I’ll have another set of scans, lumbar punctures and other fun tests to see the progress of the lesions (Hopefully the demise of the lesions!) Between now and May there are another 5 or more triathlons to complete 🙂