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.
In 1998 when I had my first episode of optical neuritis, the brand new husband was beside me. He heard the ‘maybe, one day, this will be MS’ message, but has had the attitude that we will deal with it, together, if and when.
But with a diagnosis in January 2013, who to tell, when and how. We live in a city, but it feels like a small town. Once news gets out, anyone could find out. But DH mum deserves to know, as do my parents.
DH mum came to dinner. When kids were outside, DH broke that we had been through an interesting couple of weeks. I had lost sight, we had tests, and we have a diagnosis which is good because now we know. And, we aren’t going to tell the kids. Her reaction was shock, but supportive. Since then she has done the same level of research as we have. And of course she has stories of someone who had it years ago and it destroyed their life.
My parents live interstate. I rang and insisted mum get dad on the extension so I could tell them something together.
i have had to support them. Be strong for them. Explain that it isn’t a death sentence, in fact nothing really has changed other than a shadow in my life has become real. From other blogs, I was a little prepared, but it is hard. In a way I want to go crying to mummy and Abel her to make the hurty go away. But I am having to be strong and positive. For them. Is this the way it will always be? Brave face? What is hard, is when she rang for my child’s birthday, she wanted to know if I had another attack, was I feeling okay. Trying to explain that I have a good version, and it could be months or years till the next relapse is hard.
Part of me now thinks they both see me as a label. Defective daughter in law and disabled daughter.