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Meet - Jess Hunt-Butterworth

North-West, United Kingdom

When were you diagnosed with MS? September 2016

What type of MS do you have? Relapsing-Remitting MS (RRMS)

#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?


When I received my diagnosis, I had a range of mixed emotions. On one hand, I was relieved to finally have an explanation for the symptoms I had been experiencing. However, I was also understandably scared and confused about having an illness that I had little knowledge about. It took a long time for me to receive a proper diagnosis. The reason I received my diagnosis was mainly because my parents were so persistent in advocating for me. Eventually, I was diagnosed with migraines with aura. I needed to have an MRI before being treated for it. However, It was during the MRI, that my lesions were discovered, and MS was eventually diagnosed.


Although MS has had a significant impact on my life, it has not been entirely negative. While it can be challenging, I have also found that it has made me more resilient, courageous, and confident in myself.


#2: What MS symptoms do you have and how do you manage them on a daily basis?


The symptoms that impact my daily life the most are fatigue, spasticity, neurological pain, and weakness. I also suffer from optic neuritis. Which has caused a permanent reduction in my peripheral vision and sometimes affects my entire visual field. Along with these physical symptoms, I also struggle with depression, which emerged after my diagnosis. However, I have received treatment and support that has greatly improved this aspect of my health.

In terms of treatment, I have undergone Lemtrada therapy and I take several medications for symptom management. I also receive care from physiotherapists and I use a tens machine to manage pain.


#3: Who/What has been your most important support system?

My family has been my greatest source of support. My mum fought tooth and nail to get me listened to, when I was just too tired to fight. I strongly believe that I wouldn’t have a proper diagnosis without my mum, because, they labeled my symptoms as anxiety or stress from the beginning. But she did everything in her power to have me believed. The rest of my family have been amazing throughout my journey too. My younger sister has been by my side through everything and she is my best friend. My late grandfather drove me to and from college everyday, because, I wasn’t up to taking public transportation. So without him, I would no’t have received A's in my classes. My father and brothers have also been a huge support. I owe a lot to my entire family.


My animals are a huge part of my journey. My cat Agnus has saved my life more than once. She is amazing. We call her my medi-cat. Because she lies on my limbs, before they go numb. It's like she knows before I do and if I’m doing really poorly, she’ll lie on my chest and not go anywhere else. My Labrador Daisy has also helped me a lot too. Because she has been ill for most of her life she makes me feel like she understands how I feel too. We used to spend countless hours just sitting and watching the world go by, before she passed. My boyfriend is also very understanding. He is able to support me when we go out and he makes sure that I’m ok.


#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?


I rely on crutches frequently. Sometimes I use one for extra support or sometimes I use them both, if I feel weak or when I get dizzy. Although I've used a wheelchair on several occasions, it's mostly been to attend events that my legs won't allow me to navigate through.


#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

A big part of how I stay positive is my animals. It’s hard to be sad for too long with the crazy bunch of pets we have. But a cuddle with my cat Agnus or my dog Pippa, can solve a world of issues.

I’m also very into arts and crafts. I get a lot of joy from simply coloring on days my body can’t do anything else. The people around me keep me positive. I like to remember on days when I’m not motivated, just how far I’ve come. I also try to be proud of what I’ve managed to achieve, since being diagnosed. I’ve done some big things, like skydiving and getting A's in my classes. I take the most pride in the little things, like when I am able to get out of bed or when I allow myself to just do nothing but rest. These experiences motivate me as I reflect on the numerous challenges, Ive overcome already.


#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?


I would say it’s okay, not to be okay. You can be sad or angry, but remember to keep hope alive in your heart and know that this is not the end of your life, it’s just the beginning of a new chapter! Connect with other individuals with MS, either through group settings or individual pages, for encouragement and support. Keep in mind that each person's journey with MS is unique. Since my own diagnosis, I've accomplished incredible feats that I never thought were possible. So don't believe that having MS means you're incapable of achieving remarkable things in your life, because you absolutely can!


#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?


I started my Instagram @jess.withms and a YouTube channel to spread positivity, as a means of support and information for those who need it. I also spread general awareness of MS to everyone regardless to if they have it or not. I felt compelled to create these social media channels because, having reached the five-year mark since my diagnosis (which is when I began the channels), I've learned many valuable insights that I wish I had known earlier. Therefore, I decided to put this knowledge to good use and assist others who may be in a similar situation.


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