Quality of life · Article

Introduction
People with MS might share a disease, but their symptoms could be totally unique. So every person with MS has to find what works for their individual needs.

Even so, there’s always something to learn from other people’s experiences—whether you have the same symptoms or want to learn more about navigating the disease overall.

MS One to One talked to 4 people with MS to find out what the disease is like for them.

Joao
It began with numbness in my right leg, but I felt tired all over. I also started having bladder dysfunction issues.

I was 39 years old when I was diagnosed with MS. That was the same year my father was diagnosed and hospitalized with lung cancer. His prognosis was not good, and I couldn’t deal with it at the same time as my MS diagnosis.

My first neurological consultation made things clear. Most of my “tattoos” (how I refer to MS lesions) were in my left cerebral hemisphere. Others were along my spine.

“I remember my first MRI.
It was the start of my MS note-taking.”

I remember my first MRI. It was the start of my MS note-taking. According to my records, I’ve experienced different symptoms beyond my MS.

I experienced diplopia—a visual defect you might know as double vision. It’s caused by incorrect fixation or abnormalities in the visual system.

The most curious symptom I’ve had was the loss of sensitivity in my right hand. Sometimes I couldn’t feel anything with it. One time I was frying potatoes and hot oil spilled on it. There was no pain. My 9-year-old son started to say that his father was like The Incredibles.

Once you begin to keep track of the typical features of your MS, you can talk to your doctor about how to manage it as best you can.

Noting your symptoms and making sure you’re aware of disease progression is also important.

There may be long periods between consultations. But when we get the chance to talk to our neurologists, we must be able to communicate our symptoms, as well as any needs and challenges we face due to changing symptoms. This is important for our care team to track where our MS is.

In my case, I noted the fact that bladder dysfunction was becoming an issue. I’ve become self-motivated to deal with this issue. Beyond this, I also record my daily moods as well as my diet.

These types of notes help me and my care team keep track of my MS.

And now that our phones have become such helpful devices, I use mine to record my critical information, to understand my MS behaviour better, and to overcome any issue which could affect me leading the life I want to lead.

Becoming more familiar with my MS is the best way to get the life I want. This new journey is one I’m still getting used to. And I know that everyone with MS can achieve the same results as long as they keep track of the important stuff along the way.

Barbara
Fatigue is the 1 MS symptom that has had the biggest effect on my daily life. When I was first diagnosed over 10 years ago, life revolved around my exhaustion. I was just getting by with the help of double-shot espressos.

“My old routines were crumbling,
and I soon realised I could not continue in the same way.”

My old routines were crumbling, and I soon realised I could not continue in the same way.

By understanding that and realising what was realistic for me, I had slightly more energy in the morning; I slowly started to restructure my day-to-day.

I started and finished work earlier than before. I got through important paperwork and emails first thing rather than wait until the evening. And I built in rest days when I could.

During peak fatigue times, friends and family would come to my house for catch-ups rather than meet at a café. So I was never entirely isolated.

I’ve found that by including plenty of time outdoors in daylight, some gentle exercise, and a balanced diet, I can more easily manage fatigue. I can also experience weeks or months with increased energy and then have a huge wave of fatigue once more, but I am confident I can now cope.

Birgit
I was diagnosed with MS more than 16 years ago.

In this time, I’ve had a lot of relapses. I lost control over some of my facial movements, I’ve had optical neuritis, and my walking abilities have been impacted. Not to mention the fatigue, pain, and some cognitive and mental health problems that I have had to deal with.

“Over the years, my life has changed
because my body has changed.”

Over the years, my life has changed because my body has changed. Going through all of these experiences has encouraged me to live more consciously and to strive for health despite my MS. I have structured my daily work to suit my needs and my life with MS. I have learned to say “No” and to ask for support when I need it. But above all, I now listen to my body and mind. I have chosen to reach out to a psychologist to help me find my way when things get rough.

Today, I feel good. My life is joyful. I have loosened up and tried to get rid of the rigid systems that hold me back. I still experience fatigue, insomnia, and stiffness. But I can walk again, go hiking, and ride my e-bike. Being active is key for my physical and mental wellness. It also helps to reduce fatigue and allows me to sleep better.

I’ve tried to develop my own personal strategies for relaxing. I’ve also begun to use digital health solutions to track my symptoms. These apps have allowed me to learn more about my MS and keep track of everything more easily.

These last 16 years have been challenging. But I’ve come to realise my experience has given me knowledge, which is key. It is important to know more about living with MS and to reach out to those with knowledge about brain health and progression, like our doctors.

Whether you’re newly diagnosed or you’re more experienced with MS, we all have to keep learning if we want to live on our own terms.

Jacobo
When I was diagnosed with MS, I burst out crying. Even though, at that time, I didn’t really know how much weight those 2 letters carried.

The thing with MS is that everyone’s journey is unique. Not only that, but every person’s MS will also evolve at different stages as the disease progresses and as time goes on.

What’s been really helpful has been staying in touch with people I can learn useful tips from. That includes people in my local MS community who share my disease, even if they don’t share my exact symptoms.

I also feel like I have connected with those who share their stories on social media, people who are there to listen to mine, too, without trying to solve any of my problems. We make each other feel seen and listened to.

“Over time, you learn the best thing you can do for your MS symptoms is sharing them with your care team.”

Over time, you learn the best thing you can do for your MS symptoms is sharing them with your care team. And letting them know about any relapse or specific questions or fears about progression.

It’s important to try to find reliable MS sources, taking into account that this disease is not the same for you in 2 different moments of your life, let alone for 2 different people.

These days, everyone can tell their story, which is great. But it is the job of every single person to make sure they can trust the information they’re taking in, especially living with a disease like MS.

What is important is to not just trust the first thing that pops up on the Internet because it is probably misleading (yes, I am talking about Dr. Google). If you have any questions, please go to a proper professional or a trusted source.