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“I’m proud of what I’ve achieved.”
I'm self-employed. I started my business back in 2011 making notebooks; they're all vintage books, which I recycle or repurpose. I remove the original pages and replace them with notebook pages, and I design all the artwork inside. I print and bind them myself as well so, from start to finish, it's all me.
I really enjoy finding the books – that's part of the fun. But I discovered that books are really heavy! My office is upstairs so carrying them, cutting them and punching them is all quite physical. I think that's a good thing though. It helps keep my strength up.
I was first diagnosed with MS in 2009, a year after my first symptoms.
It was scary before the diagnosis. You want a reason why this is happening to you. I lost my sight in my right eye and that's quite frightening – it's not until something goes that you realise how life was before. I was really pleased to get a diagnosis; I knew what was wrong with me. I didn't feel sad or anything like that, I just thought, “okay, I can move on now.”
I met my husband before I knew I had MS. I got diagnosed one month before we got married. He puts up with me! He helps with my business and he just understands me.
One of the things I struggle with most is fatigue – that's where planning ahead comes in. You learn to balance life – to not overdo it. Or if you're going to overdo it then you make up for it in the next day, or two, or three. Whatever it takes, really.
I keep my own notebook where I write everything down. It helps me learn the patterns and how my body is working. It was a case of figuring out what worked for me and what didn't work for me at the beginning.
I try not to focus on thinking, “one day I'm going to be in a wheelchair” or “one day I'm going to have to use a walking stick” or anything like that. If I have to use a walking stick, then I will. Until then I’ll just carry on. My approach is, “what can I do to make my future better?”
More to uS has shown me I can be proud of what I've achieved. You don't usually sit there and think, “oh yeah I've done all right actually, I've done quite well”. I should be proud of myself, and I am.
“The brighter, the better.”
“I do everything people say you shouldn’t do.”
“I love being out there.”
“This doesn’t stop me being a dad.”
“I can still play the game.”
“If you’re not happy with yourself, you’re not happy.”
“I see life through many lenses.”
UK | October 2020 | MUL20-C021b(1)