PROPPED up in bed, I’m glad I can hold the yarn needed for knitting this doll between my thumb and forefinger.
Shaking a bit, I wrap the wool around the needle in my right hand and try to create a new stitch. My hands are so shaky that I fumble it. And drop the knitting.
The Multiple Sclerosis (MS) again. At times like this I feel a bit like somebody trying to predict the end of the First World War, wondering whether it will all be over by Christmas.
But every time I drop a stitch or wake up unable to feel my hands, I feel scared. It’s a sick, churning terror in my stomach, heart and throat that comes from just not knowing what my MS has got planned for me next. The FutureMS project is gathering data from people recently diagnosed with relapsing MS to try and produce more accurate predictions into how the illness will affect people. It’s pioneering work. And it’s happening right here, in Edinburgh.
At the Anne Rowling Centre. MS feels not unlike going to war. Darkness, terror, loss, unspeakable injury. And no choice about whether or not you get involved in it. The FutureMS trial may change that “Live for the moment” attitude. It might even help me start to think more than a few months ahead.
The findings could give me and thousands others a bit more certainty about what this illness is likely to do.
* Helen Fowler is a journalist and MS campaigner