My Turn to Tell My MS Story
Hey, everyone! So... although it has been more than four years that I've been reading your inspiring stories, for some reason, it is only now that I have decided to be an active part of your community. (Yay? I hope!!) Now it is my turn to tell my story, I believe.
Somewhat a perfectionist
I was diagnosed with RRMS four years ago, when I was only 20 years old. Somewhat perfectionist back then, enrolled in a competitive nursing program. Having a beautiful family, a fiancé and lots of plans for a bright future, I was restless and harsh on myself quite often. As I’ve previously mentioned, the program was quite competitive and many requirements had to be met by me in order to not only be admitted, but also to thrive and to achieve good results. Hence, the reason for my bad habits regarding my health in the past. I needed to sleep? What is sleep though? I needed to rest and calm down? How? I was determined to push myself to the edge.
I never considered myself exceptionally smart; however, I knew I was exceptionally patient and stubborn. Could it be related to my horoscopic sign? Taurus is described as someone quite stubborn in its nature. I guess I never heard an expression that in order to take care of others, one has to take care of oneself. I never did think about it, until the first relapse occurred.
Then everything went wrong
There has been many ups and downs these past four years. My first relapse was a double vision, or as we know it, diplopia. It occurred suddenly, in the middle of the day. I literally refused to believe that I am having a serious neurological problem, when this issue have occurred for the first time. I was 20 years old. I wasn’t used to be taken care of by others. You see, in my head it was always others who were the patients, others needed help, not me. I was a caregiver. So much of unnecessary pride, isn’t it? And then boom. MRI done, full of brain lesions. My neuro confirmed: it is MS. Congratulations. Guess what I did? I disregarded it; emotionally that is. I pushed away the state of shock, dismissed the need to address the problem. I told myself that, well, it's not too bad, I am not going to die, I will just have to find the right treatment and I will be all right. I can manage it. Yup, denial, full mode. I can do it.
Fast-forward two months later... BOOM
So fast-forward two months later... BOOM. Depression. All I was holding back for months, all I didn’t want to think about broke through to the point I could not manage anything anymore. And, I had to reduce my workload significantly. All I could think of was “I just need to rest, I just need to rest, I just need a break”. But, I couldn’t have this rest while continuing the same mode de vie. So I did what was the best for me back then, and I finally took care of myself. Later on, other relapses did occur, including numbness, paresthesia, diplopia again. My optic nerve had to suffer quite a bit, cognitive issues (lots of them), at times debilitating fatigue. My depression didn’t last forever. It lasted long enough, however, to make me realize that from now on I will have to adapt my lifestyle and listen to my body.
I am doing the best I can
I changed my eternal slogan of “push through the pain” to “I am doing the best I can.” I am eternally grateful to those who were supportive during difficult moments in my life, even if they were not truly able to understand what exactly I was experiencing. MS is truly a disease with many invisible signs and symptoms. Therefore, it can get quite lonely at times.
So , finishing on a happier note, I guess?
Although MS sucks and screws up so many things in our lives, and it affects all of us differently, can you believe that at some level I am grateful for having it? Sounds so weird and so, so wrong. What I mean by that is, every single day now, every single opportunity I can take now every second even, is so much more treasured. I am grateful for this life that I am living. Grateful, I can still experience so many things. I don’t know for how long and when things may change drastically again, which amplifies my gratefulness for today. This gratefulness was unfortunately not present in the past, when I was so obsessed with over-achievements. So, I Stop for a second and enjoy that very instant of my life. Because it is so precious.
Thanks for taking time reading this.
Take care of yourselves, and have a great day, today, tomorrow, and always!
How many specialists did you see before finding "The One"?