Tingling

Like ant crawling on my skin. That's how I always awkwardly described to doctors how I was feeling while trying not to sound like a lunatic. I had Tingling in almost all parts of my body, even my face. The sensation is extremely annoying and lasted for days or weeks just like numbness. I'm glad I don't feel it anymore since I started being treated. My husband, who is an artist, helped me to create the image I had in mind. I asked him to paint ants on Shelby's arms, hands and fingers. He did it beautifully. Those were the spots I felt the sensation most. How do you live your life feeling such things so weird and complex, and still present yourself to the world as if nothing was affecting you? I think I became awfully used to that strange presence on my body somehow. I learned how to live with that. And the invisible monster could be tamed in some moments.

Dizziness

Dizziness was the first MS symptom that happened to me and It's the one that frightens me the most. The sensation of the world spinning around terrifies me deeply. I still remember exactly how it happened the first time I experienced dizziness. I was spending summer at the beach with my family and friends. I was about 18. I was sitting by the kitchen table. It was just an ordinary day and suddenly my brain went into a fast and brutal spin. It felt as if my head was turning 360 degrees. It lasted only seconds but it scared me deeply. Somehow I acknowledged that something really bad had just happened to me and I wouldn't get the answer anytime soon. I'd pretend that nothing happened but I knew that it would come back to get me and change my life forever. I didn't tell anyone how I felt that day. Two years later in the early morning before I woke up to go to work I felt it again. The dizziness was so intense. The bedroom was spinning and this time it didn't last seconds. I could barely even open my eyes. I was extremely panicked. I was laying down on my back and I remember holding onto the sides of my bed so that I wouldn't fall off on the ground. It lasted for a week. After that my life wasn't the same. I spent years trying to keep my balance, trying to keep that sensation away. I took medicines for other types of diseases, doing what I could to keep up with the job, college and life. It was overwhelming in all the ways you can imagine. I was diagnosed 10 years later after that.

Numbness

Numbness has been a part of my MS journey since the beginning. I experienced it in many levels and in different parts of my body, such as my feet, legs, arms, hands and areas of my torso. When I was in my worst shape before I got diagnosed, almost the entire left side of my body was numb. The image I used for this symptom exemplifies not only the numbness, but something else called Dysesthesias. It's a hot/cold sensation on the area of the body. The sensation was so aggressive that it was like it was burning my skin nonstop. It lasted for days or weeks. This was the only photo I posed myself for this project. My husband captured exactly the way I had in my mind. It was my first idea for this symptom since the beginning of this project three years ago. I knew I couldn't ask anyone else to go that far. I had to wait for the snow to come. There was no other way I wanted it to be. It had to be real to feel real. I feel extremely glad that after being treated I didn't feel this anymore.

Fatigue

It invades me without warnings. It might be an MS symptom that everyone with this disease feels. It might sound like an excuse to many people. Who doesn't need one more hour to sleep? Who couldn't use 10 more minutes of rest? But It goes beyond that. MS Fatigue is different from regular fatigue. It's more intense, It's connected to heat and humidity. It stops you from your regular responsibilities. It's an invisible, powerful force that drains you. I can have a good night sleep and in the middle of the morning feel exhausted. I battle with myself everyday to stay active and not surrender. The sun could be shining bright, your day filled with experiences to be lived, moments to be seized and your dreams to be accomplished, but if your body says no, your life is on hold. MS Fatigue is frustrating.

Mood Changes

It's impossible to have this disease and not have your emotions affected by the ups and downs along the way. The emotional changes can be triggered anytime. Sadness, irritability, worries, anxiety, depression are all common. My experience with those mood changes started very subtle and happened within the past 2 years. First I realized some sort of sadness started. It started out of nowhere. It was like a grief and that was enough to change my mood completely. I remember my husband looking at me and saying, "What happened? You were great 5 minutes ago." I started analyzing myself in order to identify how the mood change was triggered. Then I try to stop it from happening because I knew that it would ruin my day and upset people around me. I was determined to not allow it. I learned to read myself. Anxiety is what affected me most. I had a counselor for a while and now I take medicine for it. I thought I'd go crazy. My mind was restless with thoughts, questions and worries about everything. A simple question such as "who am I?" would run around my mind an entire day. I wouldn't concentrate in anything else because of this one single question. I was afraid, nervous and terrified about losing my sanity. It was one of the worst experiences that I had. I looked for help. It's very important to be open about what's going on and not be afraid to ask for help. I had great doctors that helped me to go back to myself and life goes on.

Blurry Vision

The way I looked at the world was changed in a crazy way when the Blurry Vision came. It was almost a psychedelic experience. Movement around me would become blurry. Colors and motions ran before my eyes uncontrollably. Car rides, people passing a few steps by me, kids twirling, etc., anything involving movement affected me. I used to say that I have a 3D chip implanted in my eyes because of its intensity. I hated to have to deal with It with and the fact that I couldn't control it was exhausting. I wanted to just freeze the world to stop its constant motion.

MS Hug

MS hug gave me the uncomfortable sensation of tightness or compression around the torso or chest. Other times it was like a sharp pain in my heart area that made me think I was having a heart attack. When I felt MS Hug the first time I was having the last relapse before my diagnosis. By that time it was like I was trying to stand before a giant wave of turbulence. On the inside I felt like I was suffocating. Like It was taking my breath away, compressing my muscles, squeezing me tight, crushing my ribs. Sometimes I wanted to scream but there was no room enough for this. On the outside I looked perfectly fine. It's a misleading name, but I can say that It is an "unforgettable" hug.

Brain Fog

It's the struggle to concentrate. Forgetfulness. Difficulty to solve problems. You lose track of conversations. Tasks that are simple can be difficult. Things you knew by heart get lost. It's like when making a simple old recipe I have to remind myself of each step, reading over and over again every line until it's done. I started experiencing Brain Fog sometime after my diagnosis. The signs were subtle and it took a while to realize that something had changed. Following directions, confusion to understand what I'm reading, forgetfulness, getting lost in the middle of conversations are part of my struggle. There are several moments I find myself in a conversation and suddenly my mind drags me to another place. My body is there. There's eye contact, but my mind is not there. The connection between me and the other person is slow. Sometimes it makes me feel embarrassed to ask people what we were talking about. Somehow I was present, but not present. It's like the mind is full of infinite boxes, one inside the other. The strangeness of this disease made me question myself about anything and everything in silence.

Optic Neuritis

Vision problems have always been a symptom that struck me the most. I used to have a blank spot in the upper part of my right eye. I had it for several weeks in different times for too long. The worst part was the doctor saying, "There's nothing wrong with you." I needed help to go to the doctor. I couldn't get there by myself but "there's nothing wrong with me?" Sometimes I used to pretend that everything was ok, going through the day as if I wasn't feeling anything until it was all I could feel. It drove me crazy. It was almost like a white blindness. I felt desperate, hopeless and mad. It was a daily battle of my broken eyes against a perfectly beautiful world.

Weakness

It took 10 years to be diagnosed and during that time I had countless weakness episodes. Because I have the Relapse Remitting type of MS it would come and go all the time. My right leg was the most affected one and it still is. If I force it too much with walks, standing for too long or exercising too much I feel It hitting me again. I can't run. I can't jump. But I can walk and that's what matters. Along those years before the diagnosis I remember dragging myself to go to places. One day, struggling to climb the stairs at work, I noticed some people looking at me as if somehow I was making all that up. Many people thought I was creating that or that there was some psychological problem. Many of my family members thought this. This picture expresses exactly how I was feeling during the strongest relapse of all. The one that led me to the doctor who diagnosed and treated me for years until I moved to the US. My whole body was losing the strength. Every step was an unimaginable struggle. It was like I was wrapped in some kind of power that weakened my strength everyday a little bit more. By that time my mother took me everywhere looking for answers. I couldn't walk by myself. I was at my worst. I was at the limit by then, but a thought always crossed my mind—nothing lasts forever. This too shall pass. I felt the truth was close to me. It felt frightening and liberating at the same time.