On Wednesday, I had an appointment with my MS nurse to discuss how the latest round of Campath had gone.
I had a good chat, did a blood test, made a new appointment for next February and left, happy and relaxed. I’d reached a significant milestone.
This was probably the first MS appointment where the staff haven’t had to virtually prise my fingers from the reception desk and tell me to go home, everything will be fine. I always had just one more question, one more point to raise. I could quite happily have set up camp in the waiting room.
At my very first appointment with the neurologist, I left confused and with a head full of unfamiliar medical terminology, stunned that something so potentially huge could be on the horizon. I wanted to stay in that room forever, boring him to tears as I struggled to make sense of what he was telling me. At appointments with the MS nurses, there was a sense of comfort and safety as I sat in their room, emotions never far from the surface.
Having been thrust into an unfamiliar environment, I very quickly didn’t want to leave. The MS team had an answer to everything. If I could have taken an MS nurse home, I would have. The whole MS diagnostic process probably doesn’t help. Who knew it can take so long? Who, outside of the MS world has an idea what the McDonald criteria is, what oligoclonal bands are?
Not only that, there is the sense that your own world will never be the same. How do you tell your family? How can you cope once you start being bullied at work due to your diagnosis? How bad was my health going to get? The MS team helped me through it all. I was given access to a vast array of support, equipping me to become my own expert of my MS.
It’s been a long two years. When I look back to those frightening early days, I marvel at how far I have come. I’m still me, I just happen to have MS, and I now know exactly how to live with it.
