My daughter and I play a game called ‘Would you rather?’ – think along the lines of ‘would you rather have pizza or ice-cream?’, ‘would you rather have no teeth or no eyebrows?’ or, the most recent one, ‘would you rather have a nose or no eyeballs?’… Hmm, not that difficult a decision!
The other night she asked, ‘would you rather die or not die?’ ‘Not die, of course’, I replied. ‘Yeah because, you know, your legs…..’ Then the same night, whilst learning about nerves looking at one of his body books before bed, my son asked ‘Are you going to get worse?’ I was a bit stumped…I’ve always been open and honest with my kids about my MS; it is not as if it is something I can hide from them. They see my walking worsen over the course of a day, they know that I rely on afternoon naps for a rest, and they help me to make OMS friendly cakes and treats. But I guess, looking back, that I have never fully explained the long term impact that MS can have. They know what MS is – I have likened it to a radio that stops working because the electrical cable is damaged, and they see me but they don’t know other people with MS.
They have seen a DVD that my MS nurse gave me, called ‘Annie and Dan talk about MS’. It explains what MS is and what a relapse is. However, there wasn’t much on progressive MS, which, from my personal experience and view point, is the most uncertain kind. (Having said that, for many, the diagnosis of MS itself can lead to a lot of uncertainty). What will I be like this time next year? Am I going to plateau or keep declining? Am I going to be going to my kids’ weddings in a wheelchair, or will I still be able to manage on my crutches? Lots of questions… and if I have them, what kind of questions do my kids have?
I see my role as being positive for my kids, to allay any fears they may have. Do people die from MS? According to the NHS choices website: