My sister just rang. We spoke for an hour or so. She commented on how much weight I had lost (thanks for noticing). she asked if it was diet or gym, I said had health issues earlier this year and gave up sat fat. Then I changed the subject – tried on my wedding dress from 15 years ago and it is too big. Eventually there was silence and she asked, twice. So I told her. I have multiple sclerosis. Not what she was expecting.
i am having a good day. So I said all the right things and comforted her. Because what I have learnt, rightly or wrongly, it isn’t about us. Not about our grief, anger or denial. It is about ‘them’. Comforting them. Giving information to them.
I am sure that right now my sister is telling her husband and together they are googling rrms optic neuritis and multiple sclerosis. I gave her permission to ring and ask questions, because if I don’t know the answers, I probably should.
Multiple sclerosis is a long game, and a lonely game. For those of us in the game, and for our families stuck on the sidelines cheering.