Living with a chronic illness

Vivre avec une maladie chronique

Like a blow from a club falling on my head. This is a bit like the feeling I had when I was diagnosed with multiple sclerosis last spring. After long weeks of fatigue, pain and numbness, the verdict was in, and it turned my life upside down, both personal and professional. But very quickly, resilience: life must continue and be beautiful. Today, I am giving you a personal testimony - which I hesitated to post, in order to send the following message to those who are experiencing the same thing: you are not alone!

What were the steps that led to the diagnosis of your illness?

Last April, I had what I thought was a urinary tract infection, and despite taking two antibiotics, I continued to feel unwell for three weeks. I then spent a few days in Marrakech where I felt extremely tired and spent a lot of time in my room sleeping.
When I returned from Morocco, my left leg started to go numb, and it felt like I was being shocked. A few days later, I woke up with little mobility in my right leg, I could barely walk.
I then had several MRIs and other tests which led to the final diagnosis: early-stage multiple sclerosis.

For a month my life stopped, I was very tired, I slept all day. I was treated with corticosteroids for a week. At the time, I read a lot of articles and testimonials about the disease.
I underwent treatment to make the symptoms disappear and, although it took a few weeks, I regained feeling in my legs and was able to walk normally. I also gained 7kg ;)

A month later, I resumed my activities, both within the company and in my private life. I don't feel deprived of anything, I lead a normal life, while keeping in mind that I get tired more quickly than before. In these moments, I must respect my body and rest.

How did you take the news?

At the time, I was in shock and very scared, as I didn't know much about the disease or the consequences it could have on my current and future life. Despite the shock of the first day and the diagnosis of a chronic degenerative illness, I was grateful that I did not have a terminal illness. I was pragmatic from the start: how can I live better?

I read a lot, I met people with the same illness, the same age as me, some older, as well as several neurologists. I realized that the treatments were very advanced on the issue and that they allowed patients to lead a normal life. They prevent the appearance of new lesions along the spinal cord and, often, the disease regresses.

I knew, from the start, that I did not want to be seen as a sick person, nor did I want to feel like a sick person in order to live my life to the fullest. But when you think about it, isn’t that what we should all be doing?
The illness has given me a different perspective on life, especially about myself. At first, I thought a lot about why my body was attacking itself. I realized that maybe it was time to do some soul searching and take better care of myself.

What has this changed in your daily life? 

Today, I feel much more active, the symptoms have almost all disappeared. I force myself to be physically active almost every day and when I feel tired, I stretch. It's important to keep your body active and eat healthy, although of course I don't always feel like it. If I feel tired, I take a break and rest. I respect my body and its needs more.

For activities like going to the beach or somewhere further from home, I wonder if I really feel capable of doing it, especially if it's hot, because the heat makes me more tired.

I had great support from my family. Everyone was there for me, I was accompanied to all my appointments and exams. Like me, they didn't know much about the disease, so they did research so they could help me as best they could.

Has this news called into question your choice to be an entrepreneur?

At no time did I question my choice to be an entrepreneur. I have always been grateful to have these flexible hours and to be able to work from home. I don't like to mix my personal and professional life too much, but when I'm tired, I choose to rest and catch up later.

Do you have moments of doubt, worries?

As soon as I learned of the diagnosis, I tried to focus on the positive. Of course, it is a chronic degenerative disease, and this could have consequences in the future. Despite the progress in medicine and the testimonies I have heard, doubts and uncertainties often arise.

I think it's important to have a plan for the future. An action plan in case something happens, but without focusing too much on it. The important thing, whether you are sick or healthy, is really to live the present in the best possible way.

Any advice for people going through the same thing as you?

Discovering that you have a lifelong and degenerative disease is heavy news. Sclerosis is a disease with a thousand faces, because each patient presents different symptoms and experiences the disease in their own way.

I think it is very important to urgently change our diet and avoid inflammatory foods, because the gut is the second brain. Processed foods should be avoided. Exercise your body by doing exercises that you enjoy (even if it means walking every day). Additionally, the power of meditation is crucial.
I've been doing all of this since I was diagnosed. It's a process, but one that will be worth it in a few years.

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