I want a future without MS for my daughter
I couldn’t feel the floor under my feet
I was diagnosed with MS on 3 March 2018. I can actually remember the day quite well. I had very bad pins and needles. When I was sitting down, it felt like I had been sitting on a hard, cold floor for a long time. I couldn’t feel the floor under my feet and my knees were weak.
Just months later and into my next relapse, I had trouble walking. I felt pretty devastated, but relieved that that there was a course of treatment that could potentially slow my MS progression.
Stopping MS would change lives
That’s why I‘m supporting the Stop MS Appeal. It would be great if we could have a future where nobody needs to worry about their MS getting worse. It would mean the world to me. If scientists could manage this, it would change so many people’s lives.
You need to understand my MS
Before I was diagnosed with MS I knew nothing about it at all. But it’s more common than people think. There’s more than 100,000 people living with it in the UK and people need to be more aware of the different types and how it affects you.
After my first relapse and struggling to walk, I remember feeling self conscious when people would stare at me in public and wonder why I was walking funny.
It had never before crossed my mind how I would feel in this situation.
My fatigue doesn’t mean I’m a ‘bit tired’
The worst symptom for me is fatigue. When you say to people the word fatigue, they just think you’re a bit tired. My fatigue is painful. It hurts to lift my arms and legs. I get muscle spasms and nerve pain across my body and I don’t know when or where it is going to happen.
My MS doesn’t stop me doing the things I love
It’s taken me quite a while to work out how to manage my MS and I have finally come to the conclusion that vigorous exercise is a very beneficial thing for me as well as five to six strong coffees per day!
There’s a lot of will power and discipline involved in pushing yourself to do it. You do feel better in the end but I understand all too well that it’s difficult to tell someone with MS to exercise, because some days you just physically can’t.
I‘m a professional musician, I play the harp and the piano and I teach five days a week. I love anything to do with arts and crafts - basically anything creative.
I will tell my daughter I have MS
I don’t want my daughter to see me unwell. When she does, I just want to disappear off upstairs so she doesn’t witness the worst parts of my fatigue or pain. This is probably the worst part for me.
I don’t mind my husband seeing me like this, but she knows something’s not right, and knows when I’m not well. The level of empathy she has at such a young age is astounding, cuddling into me and offering to care for me when I’m feeling at my worst.
I think I will tell my daughter I have MS within the next year. I’ll probably tell her it’s something I have to live with and exactly what’s going on inside my body.
Why I won’t stop thinking about tomorrow
Imagine if a young woman in her 20s with a family is diagnosed with MS, like me. She goes to her neurologist fearing the worst but he says ‘you have MS, but it’s ok, we have a drug to stop it’, then I’ve done my job taking part in this campaign.
Will you join Team Stop MS?
We’re the closest we’ve ever been to treatments for everyone. We can see a future where no-one needs to worry about their MS getting worse. To get us there we’ve launched our biggest fundraising appeal yet and we need your help.
The next research breakthrough is in reach
Your donation will help stop MS.
£30could process one blood sample, giving researchers crucial information about genes and the immune system.
£50could pay for an hour on a microscope, so scientists can study cells and tissue in greater detail and improve their understanding of the biology of MS.
£100could pay for half an hour of MRI use, so researchers can monitor the success of clinical trials and understand MS in more detail.
Every penny you give really does take us a step closer to stopping MS. Your donation will make a difference.
£10a month could pay for lab equipment like microscope slides to study the building blocks of MS
£20a month could pay for lab equipment like petri dishes to grow bacteria important for studying genetics
£30a month could process a blood sample to help us understand what causes MS, so we can stop it in its tracks
Your regular donation means we can keep funding world class MS research with confidence. Together we will stop MS.