I never know if I’m going to wake up tomorrow and not be able to use my legs or my arms.
I have symptoms every day – I don’t remember the last time I felt fine. I get fatigue, pain, numbness, spasticity in my legs. I get so many things it’s hard to put into words.
To help ease my symptoms I take 26 tablets a day. But these medications aren’t treating my MS. There’s nothing I can take to help with progression.
I feel scared about the future as I never know when things are going to get worse. I’m always living life on the edge. If there was a treatment that could stop progression, I’d be so happy I would cry. It would be life changing.
I was diagnosed with MS when I was 19
I was really upset about it at the time. I knew something was wrong with me but I didn’t expect it to be a lifelong condition like MS. It made me feel strange and I didn’t know how to react at first.
MS has affected my life in lots of ways. I used to work full time. I used to go out all the time with my friends. Everything's changed. I haven’t been on a night out for over a year, and I’ve unfortunately had to stop working.
I'm 25 and my life is completely different to how my friends live.
On a good day I can go for a short walk to the shop. But even then I get sensory overload and feel like I need to escape and go into my bedroom. So even on good days things are a struggle.
What supports me to live well
I live with my mum and little sister. I’m close with all my family and I feel really supported by them.
Me, my mum and my sister like to watch films together. My sister loves reading so she’ll read a book to me. She helps me dry my hair and if I’m feeling rubbish she’ll bring me my medication or a drink. She’s a great help. I try and spend time with my friends as much as I can, even if that is only once a week.
I set up an MS Facebook group two years ago - so far there’s over 6,500 members in the UK and Ireland! I can manage it in bed in my PJs. People say they feel really supported by it, which is amazing and makes me so happy.
I wish I could have one day with no MS symptoms
There’s times I think: why me? But I deal with MS by trying to think positively, and make the most of what I have.
MS is unpredictable, so you have to get on with your life as much as you can. You never know what MS has for you in the future.