When my fatigue levels are really high it’s easier to say I’m tired as people just don’t get it.
My fatigue can be mental and physical. I get brain fog. Then I can’t even speak, I can’t string a sentence together.
Other symptoms I get include numbness and tingling, weakness in my limbs and pain. I had an optic neuritis attack and lost my sight for 3 months. That was scary.
There are no visible signs I’m ill
Because it’s invisible it’s very hard to express and explain to people. If I wore a neck brace, people would understand there’s things I can’t do.
I can present myself as the best kept person ever. But how I feel is very different. If I’m going to a social event, I’ll do my hair and make-up. Then people think: she’s wearing bright colours, she’s got a bit of lippy on, she’s looking really good – there’s nothing wrong with her.
They don’t see me suffer later on because I’ve over-exerted myself. They don’t see that I’m lying in my blanket on my sofa. And I’m not really up to talking, or doing my housework, or dinner is not going to get cooked that day.
Talking about MS with people from my culture
I’m Asian and we have a culture where you don’t tell anybody about illness. You brush it under the carpet. The attitude can be: why do you want to talk about it? Why do you want to tell people about your weaknesses?
I had an opportunity to do a talk about MS in front of about 100 ladies at my local temple. They listened in disbelief, but then I explained the invisibility of it.
I got a lot of sympathy for it, which is not what I wanted - I wanted people to understand that these are real things not allowing me to live my full life. You don’t know how you’re going to be one day to the next, and you can’t be told to have a paracetamol or go and lie down for a few hours.
People asked questions and I felt I’d reached out. In society we need to reduce ignorance and raise awareness. It’s really important to me that I help to do that.
MS has made me more isolated
Gradually over time I’ve become more isolated. I don’t know if that’s what other people have done to me, or if I’ve made the conscious decision to not be included because I need to preserve what energies I’ve got left.
When I got diagnosed I thought I’m going to fight this like a lioness. And it is your fight on your own because even the closest people to you don’t understand.