Getting to know your MS

Getting to know your MS
Inspiring stories Article

Jacobo

When I was told I had MS, I felt like my world collapsing around me. However, I knew for a fact that it was not going to be a big issue, but instead something I had to learn to live with.

I decided to keep having a ‘normal’ life. I stopped being a waiter, but kept studying for my degree in Law. From the very beginning I listened to what my doctor had to say and I started taking my meds right away. 

I hap planned to spend a year abroad when I was diagnosed, and I didn’t want to let the diagnosis stop me from doing what I wanted to do. Since I did not have any symptoms at the time, I went on holiday and was able to do everything that I had planned to do. 

However, I did have to learn to take things a little easier because my body not able to do more strenuous tasks (basically, making things slower). I started a job, but unfortunately after 5 years of working my body couldn’t take it anymore and I had to return home.

During the time I was working I did not really enjoy my job, so I studied to become a public IP lawyer. I took an exam, and passed it. This is the thing I’m most proud of. I have also started a blog about this sort of thing and I enjoy writing for it.

Everyone should be aware that MS is a very changeable disease, that means it’s can cause changes in life – both good and bad.

Even though there are things that I cant do following my diagnosis, there are still many things that I can do, I just need to adapt my approach. Life is not easy for anyone and we all need to be able adapt so that we can live it the best that we can.

 

João

It could be a start, when you´re diagnosed with MS, but it´s not so simple.

Everything is new when you’re diagnosed with MS. You may have had your suspicions that something wasnt quite right due to symptoms such as numbness or bladder dysfunction. However, now reality has started to set in following confirmation by your neurologist. In my case, reality set in when I was diagnosed with relapsing-remitting MS (RRMS).

At home things got different. I became the center of attention and everyone was worried about me. Sometimes I became very suffocated with all that attention and smothering. It seemed like they had thought I had lost my own capacities to do everything. In my opinion it’s very important for HCPs to talk to the family of their patients about MS. This is so that those who surround you understand that an MS diagnosis is not the end of life.

My working life didn’t suffer as much as I thought it would. I was a liberal professional, and I was able to adapt my working time to best suit me.

However, my social life did change. My bladder dysfunction was my primal enemy. Due to the continuous urgency of visiting the loo, it compromised my willingness to meet friends. Thankfully this stopped after a urologist consultancy and appropriate medication. After all, you must face the fact that becoming isolated is not an option. Things are different in many aspects now following my diagnosis. For some life can become slower and quieter, others it doesnt slow down they still try to accompllish their goals. You should focus on what it gives you pleasure and try living a normal life beyond MS.

It´s been a long journey since I was diagnosed in 2011. Last week I had my first appointment with my neurologist in person since the start of pandemic period. It was a nice and productive talk. I was delighted when he told me that my last relapse recorded was in 2015. It´s very important to trust HCP´s from the beginning. They are the first to confront us with the disease, and the ones who will follow us on this journey. Viewing this disease as the be all and end all is not a good mindset. We should seek help whenever possible and not try to hide our weaknesses. Those who like us will always like us and will be willing to help. 

Above all, maintain a sensible posture. We must respect the disease without ever jeopardizing our physical and mental well-being. Make sure the process dows not stop after visiting a neurologist. See as many specialists as you deem necessary. 

At this time, I feel comfortable with my MS and the way I’ve been dealing with it. Now I’m focused on my priorities and trusting my HCPs.

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