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Getting the most out of life despite MS, my story

2018-09-06T16:26:37+00:00 March 12th, 2018|Multiple Sclerosis|0 Comments

Telling about my life with Relapsing Remitting Multiple Sclerosis (rrms) as fellow traveler let me feeling less alone

The reactions to the diagnosis of multiple sclerosis can vary greatly: someone falls into a deep state of crisis, others decide to completely ignore the situation. In any case, the diagnosis involves many changes, uncertainties, questions and feelings that are difficult to manage.

I was 30, and I had just moved to a new city, for about a month I had like a fog in my right eye. I have always given little weight to the diseases and even in this case I underestimated the symptom. It wasmy mother who insisted and accompanied me to the eye doctor where everything seemed to be normal. It was always my mother who insisted and made an appointment for me at the neurologist, who, as soon as knew the symptoms, told me to go immediately to the hospital.

They were 11 years ago, I had just married and I was trying to have a baby. At the hospital they held me for 15 days and they did a lot of tests, included magnetic resonance imaging (MRI), visual evoked potential (VEP) testing, and cerebrospinal fluid (CSF) analysis; the latst was very painful, I stood for a long time head down, without being able to move and vomited, I hoped it was a symptom of being pregnant.

Nobody was telling me anything, I was at the mercy of the doctors and I was afraid. In the hospital they gave me very high doses of drugs and the symptoms passed, I felt well again. I did not give due importance to the episode, I was hoping to wait for a baby, and I cried so much when I found out that the pregnancy test was negative, not because I had discovered I was ill with a chronic disease.

The doctors did not give me much explanation and they resigned me, 10-15 years ago before making a diagnosis of Multiple Sclerosis 3 relapses were to occur. I understood by myself that I had MS looking for symptoms on internet. My reaction to the disease was to completely ignore the situation and live as if nothing had happened. Just because I felt I was always very tired, I turned to a specialized hospital and started a cure, continuing to do exactly what I did before the diagnosis.

 

Living with Relapsing-Remitting Multiple Sclerosis (rrms) is not a fairy tale

Since that day I’m living with the disease for 11 years, it has become a life partner for me and for the people who love me. Only in time did I understand what it really was, and that ignoring it was not possible.

When I have a flare-ups or relapses of Multiple Sclerosis, I ailing but I almost do not realize…, before or later it will pass, I say…, but then it get worse … and who is around me, close to me, in tune with me, he notices … and asks me: “Are you alright?” And I: “Yes, why?”… and really everything seems to me normal. Then there is the visit from the neurologist … the awareness that, yes, it is another relapse. Then despair takes over, for me, to start the treatment with cortisone with all its contraindications but also beneficials. Ok then let’s do cortisone… angry frightened but always with someone who supports me and that sometimes even makes me angry just to make me feel “normal”. I finish the cortisone. It does not immediately effect but yes… I have to say, however, that before I was really feeling bad… then I taste a bit of my normalcy if you can talk of normalcy in a chronic disease… I’m a little better just to remember how it feels between a relapse and another… but also this is life, right?

In one of the most recent crises I stayed in a wheelchair for a month and it took many rehab sessions to resume walking with my legs.

I had to learn to compromise: I can no longer work and I have memory problems. There are ups and downs moments, the therapy helps me to recover after the severe crises, but unfortunately the drugs to resolve the symptoms cause me panic and anxiety and make me fat.

Getting the most out of life despite rrms

Every day is a new challenge that I accept with determination. I have never stopped devoting myself to the things I love most even though the illness has changed me a lot, for some things even in a better person, for example I am more attentive to people around me and I better understand emotions.

Many do not understand what it means to have multiple sclerosis,they see me standing without a wheelchair and think it’s all an excuse, that I’m lazy, listless, this hurts me so much. Even my parents understood the gravity of my situation only when they saw me for a month in a wheelchair. It is very difficult for a person with MS to make others understand how you feel. Sometimes I’m on the couch all day and I can not get up, I see that there are 1000 things to do and I feel I can not do it.

But then there are the good moments, and in those the desire pushes me to do all I can to continue to be myself, to do what I love. I especially do everything to not stop traveling.

I know that later I will be more tired but traveling is my passion, my life. Designing places to visit, studying culture, … the journey begins long before the move and ends long after the return, remains within me and gives me the strength to recover to be able to redesign another and another again.

My Strategy: Carpe Diem!
I understood that, to develop a personal strategy of overcoming difficulties and living together with the disease, the management of the disease must remain the main objective, but not the only one. You can try to learn how to give the disease the right space, or a position that is not too dominant in your life, this is fundamental. A person with Multiple Sclerosis must learn not to define himself solely for his illness, but to continue to devote space and time to other aspects of life. In doing so, he will be able to develop his personality instead of letting the disease be in charge of his life.

It was not easy to reprogram my whole life adding the limits brought by MS, but after so many years I learned that I should not give up on beautiful things, I must stop planning in the long run and enjoy the periods in which I’m fine. My recipe is to add some flexibility and improvisational capability, think positively, try not to get discouraged, focus on what we can do and organize beautiful things at the last minute.

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