I am the expert in my MS!
“I made it my moto that I will take more from my MS than it takes from me.”
Ellen Marshall, Living with MS
A background to my story
Growing up, I was a bit of a stroppy teenager (I’m sure if my mum was reading this she would be saying “a bit” really sarcastically right about now!). Thing is, I’m glad that I was. I was stubborn, headstrong and above all, knew what I wanted. If someone had said to 14 year old me that those attributes would come in handy one day, I might have put them to use earlier on.
At the age of 27, I was sat in the doctors surgery speaking to the 4th locum doctor I’d seen in the space of a few weeks. Begging to be put on as many waiting lists as possible to see a neurologist. I ended up paying to see one privately. Don’t get me wrong I’m not in a position to throw money at my problems but my health is way more important to me than buying new clothes for the next year!
Sometimes I beat myself up and think maybe I would have found out I had RRMS earlier if I’d just gone to A&E straight away. Then on the flip side, I’m thankful I had a bit of time on my hands to process it all. My diagnosis was no surprise thanks to Google. This is where my stroppy teenager attributes came into play. Like I said, I’m head strong, I knew what to read and what to ignore, and I wanted to know the hard scientific facts. Understanding the science made me truly grasp what was happening to my body, it eliminated some of that emotional stress that can come with a diagnosis like this.
Moving forward and planning ahead
I knew the chances were that in my diagnosis appointment I would be booked in for another appointment to talk about treatment. I didn’t want that. I didn’t want to wait any longer, so I got researching every DMT (disease-modifying therapy) available. I looked at the pros and cons, the side effects, the reduction in progression or relapses, and most importantly how it would fit in with my life.
I had made my decision and the “stubborn me” wasn’t going to budge. Not because I felt entitled or felt like I should have the best, but because I felt like I should have what’s best for me. Because what’s best for me and my lifestyle would also mean potentially less hospital visits and higher odds of me living a more fulfilled life. Diagnosis day came and I was sat in a room with 5 medical members of staff and my boyfriend when I was told “You have MS” (multiple sclerosis). They were shocked when I said, “Cool I want this DMT.” They told me it wasn’t one they prescribed and attempted to suggest another one. My response was to tell them the exact hospital I wanted to be referred to, in order to access the treatment, I believed was right for me.
The nurse took me into a room and handed me a sheet of photocopied paper with all the treatments on, it had been copied so much the words had started to bleed into one another. They also handed me this nice, shiny box for another DMT. This was obviously what they wanted me to have. I wasn’t going to budge. Yes, they may be the expert in MS and I’m not taking that away from them. I value their opinions and expertise, but they are not the expert in my MS and my needs and wants in life. They can only know what they are if I share that with them.
I told them I wanted a family in the future. I told them I wanted a DMT that would hit it hard. I told them I wanted one DMT and not lots of potential failed ones, because having one lot of potential long term side effects was more appealing that several from different treatments.
I think they understood in that moment that I really did know what I wanted, and that I really did understand it.
Be your own MS expert
It makes me sad and angry when I speak to people who are shocked when they find out how the treatment they are on works in their body. Or are surprised when they find out it doesn’t work with their plans for the future or frightened of other DMTs because their health care professional has scared them off it.
This is your MS. You owe it to yourself to research and to understand what’s important to you as a person, not just an MS patient. You wouldn’t buy a car without doing research looking at the specifications and comparing it to other cars, so why wouldn’t you do that for your treatment? It’s like with everything in life, you will be given the tools you need but it’s up to you to use them. If you’re not confident in using them then ask for help.
My current priorities in life
I turn 31 in a few months. I have not had a relapse and I most definitely have not slowed down. Since being diagnosed with MS I made it my motto that I will take more from my MS than it takes from me.
I’ve been lucky enough to attend Glastonbury twice and I am going again this year! I’ve flown all the way to America for Coachella festival, and I have been to more music gigs than I can count. My treatment has fit in perfectly with my lifestyle. I spend very little time in my life having to work around my DMT.
I often think how much more complex my life would be if I had gone for the hospitals choice of DMT. Would I be able to go the gym as much as I do, or would the side effects prevent me? Would I be able to travel as stress free as I do now? Would I have to think about storing my treatment correctly at festivals?
I am so glad I thought about those situations before picking my treatment. It meant I could have that honest conversation with my MS nurse and they could in turn see inside me for who I am, not see inside me for the lesions I have.
Your MS experience
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