Patient Stories

First of all, I would like to say that we must keep hope. I saw my doctor recently and the research about dry eyes and corneal neuralgia is progressing enormously. These past months, he has been more and more solicited, about my situation. I’ll to try to be brief. During several years, I wandered from a doctor to another one. They didn’t believe me back then because, according to them, my ocular dryness, couldn’t justify this much pain. For one year and a half, I’ve been under the care of a renowned professor. I’ve been diagnosed with severe dry eyes and corneal neuralgia.
I could say that I am « an ancient » in spite of my youth. Indeed I am 24 years old and I have suffered from this disease for about 3 years now. I have a lot of different medications to take. Some of them have are very hard to handle (for my body) I can’t list everything. I am monitored by an ophtalmologist, and also by a neurologist, in a medical center for the pain. I tried ciclosporine, autologous serum, doxycycline, Lipiflow and a lot of drugs (pregabaline, gabapentine, bromazepam, duloxetine, venlafaxine…) even ketamine drip, I might tell you that my life has not been easy since I got this illness.
On a scale of 1 to 10, I live everyday with a pain of 8 (never under 7). This disease terribly impacted my professionnal, personnal and social life. Indeed, it’s very difficult for the others to understand how arduous this is to live with a chronic pain and an invisible disease. It has been very hard to face this inability to grasp.
However, I decided to fight and even pursue my studies . If everything is ok, I will obtain my master degree soon. I am alternating school and my internship. It has been very complicated to deal with my classes, my work, my medical appointments and this chronic pain at the same time! I haven’t had any day of relaxation since this pain hurting me everyday but I want to go ahead because I hope to be cured one day (but I must save money to try new treatments).I keep hope and have some trails for 2017.
This illness totally changed me in a good way. I became more humble and empathic. In the future, I would like to work in an HR Department « Handicap and Diversity » to care and help people. Unfortunately, I am also more aware of the human beings malice, the pain can make them do incredible things.It grinds me that there isn’t more support and sharing.
Some months ago, I obtained the status of handicapped person to protect me professionally, because when you suffer from an invisible handicap and have a normal appearance, the world seems to be very merciless and unfair. I am sorry if my story is not very chronological or if I write exactly the way I think. I definitely don’t want my letter to be depressing. But my everyday life is reduce to suffer and fight. Sometimes I vomit and wake up during the night due to my extrem pain, I cry in the toilets at work, at school, but I make sure that the others do not seeing me while I’m doing this. I don’t want to arouse pity.
At the beginning of my disease, I took myself away from my family but fortunately, for one year, they have taken care for me very well. I don’t know what I could do without them…I have some friends who are aware of my situation and I speak with some persons who have the same disease than me. Some of them became also my friends. The most important is stop withdrawing into yourself. I know it’s easy to say but if you stay alone, you fall into a deep depression.
My ophtalmologist is very renowned, I trust him a lot. With the medical center for the pain and the psychologist, I have a lot of people around to help me ^^. The aim of my testimony is to say : ok, I have pain, but we must fight and keep hope. Things are moving and going forward. Don’t give up !

bloodshot-eyeSofia C.

Dry Eye Sufferer


 

A tear for every happy thought

Nestled in the back of my seat, I am slumping without truly sleeping. Dad is driving, the radio is spiting out an old hit from Dire Straits. Dad and I have issues to understand each other, but Dire Straits, we understand ! In the distance, the lights of Paris are drafted. I haven’t seen Paris by night for ten years. The 350 km which separate me from the hospital are a few hard to stand. I took profit from my parents’ trip in the capital to fix my appointment the same day. I am finally going to meet this great professor of whom everybody speak. The professor of « dry eyes ». « Dry eyes », I hate this term, it’s an euphemism reductive and humiliating which conveys very well the ignorance of the medical community in this field. By the way, nobody really understand my « mysterious disease ». Myself, two years ago, I had been ignorant of the words « meibography » or « confocal microscopy », these strange words don’t exist in The Shire. We enter in Paris, I am very far away from home now.
I have the impression that I am drowning into the grey of the haussmannian buildings which parade. Tomorrow, I will be 30 and I am currently afraid as a baby girl. Mum seems to be a bit aware of the situation since my surgery, this singular day when they cut my eyelid in two to remove an ulcerated piece. She saw the ground falling under my feet when I looked myself in front the mirror. A woman understands those things. Today my face doesn’t reflect the stigmata of the operation anymore, I know I’m very lucky. Sometimes, I wish that my dad understands the situation. He refuses to speak about it, tells me to put my drops elsewhere, far away from the sight of the others …I didn’t wear the beautiful uniform of the Air Force, I never had perilous mission, but maybe, one day, he will realize that I’m strong and brave like him, much more than he thinks. My war is invisible and my weapons are different.
We passed in front of the Arc de Triomphe, they relighted the flame on the grave of the anonymous soldier, it’s November, it’s the time of commemorations. We spend the night at a friend’s crib, a stressful night. When I went out to breath the air of the morning, it was freezing. I blew in my hands to reheat them, it was stinging me a bit, so I look at my hands. it was very damaged. I have so much pain in my eyes that I don’t notice when the rest of my body is hurting. That’s clever ! it’s bleeding now. Suddenly, I feel something more frozen which is burning my skin. It’s snowing. An autumn snow, too weak for printing the ground. A flake falls into the deep of my palm. It melts instantaneously. So, I remembered what my professor of chemistry said : « Nothing is lost, everything is transformed ». My life has changed a lot since I got this pain but it’s still my life.
I started to tell my daily life , I felt embarassed at first, but I got used to repeat these words a thousand times, in exchange of a good psychologist adress. I scaled my pain, I don’t like to give a number, how can I reduce what I am experiencing to a number ? How quantify the non-quantifiable ?… « 7/10 permanently, with some crisis ». I’m ashamed, I look so normal… « I believe you. »…I’ve been hoping for these words for a long time. I have to pretend that anything is happening to me with a smile on my face in front the others. I’m going to try the autologous serum soon, drops made with my own blood. I’ve been waiting for this product for one year, this treatment is considered as a luxury medicine in my country. I know it won’t be a miracle, but it’s a little relief for a lot of patients. I will be compelled to come back frequently at the hospital but I’ll go back home happy.
My situation doesn’t allow me to upgrade or go back to university, so they put me here, like a porcelain doll waiting for better days. For most of the officers, I am just the charming idiot who’s smiling at them behind the glass. They are all ignorant of the fact that, a long time ago, in a galaxy far far away…I was a part of the best students of the state….All, except my captain, this is probably the reason why he doesn’t forgive me. I arrive often late, sometimes I vomit. And there was this day, this day when I swept the files on my desk with the back of my hand and left the room sobbing from rage. He looked at me with anger, my burning tears were scratching my face, they had a very bad quality, I put myself in danger, I must learn to control my emotions. This disease took everything from me gradually, except my right of crying. He told me we all have our difficulties, we all have to make efforts. I know he’s right, I just haven’t had one real night of sleep for four years….I am so tired.
The tiredness is omnipresent. My body is exhausted. These past four years, I had the impression that I swallowed a full drugstore. Antibiotics, immunosuppressants, neuroleptics…I have more than one hour of daily cares : a strange device which produces steam, vibrating engines, lotions, massages…They say my acuteness is perfect, however my vision is blurred, I have difficulties with reading the road boards. I live in the constant fear of falling asleep driving, to kill myself or another person….I am so tired. But I must earn my living. Earn life risking to lose it. This is so ironic.
Nevertheless, the hardest thing is not losing my life but losing myself. Every day, I’m fighting against the pain to preserve myself. It’s very dark in my flat because the light flays my face. I am at 8. I turn on the music. I try to go with the flow, like before. The show must go on. I am the dancer of shadows, haunting my own living room. I am at 9. I sit down and record my voice singing. I send it to mum. The next day she tells me she cried. I’m feeling guilty from the selfish pleasure I have when I know she’s touched.
December comes, tomorrow it’s christmas. I came back home. This morning is less cold than the others. I go downstairs to take my breakfast. This tea has a strange flavour. I confused sugar with the granules of Maurice, my fish…I am so tired. Dad walks past me while I put my drops again. I instill them every hour, sometimes every fifteen minutes. See the disillusion in his eyes it’s something more painful than the pain itself. I go out a few. The ocean air brought us a typical mist. I walk on the beach until the end of the street. The place is deserted at this time of year. I begin shouting, at the top of my strengths, at the top of my soul, I shout. I shout with my echo as the only answer. But I’m not asking for answers. If you’re looking for sense it costs, you to become unhappy. I believe that life has no meaning. You can allocate sense to your words or to your actions, but not to your existence itself. Life is just a wonderful and senseless thing like you. I remember this woman in the waiting room at the hospital who told me : « It’s useless to have such beautiful eyes ! ». It’s true, they are beautiful. By the way, it’s the only thing I have ever found beautiful with me…I spent all my summers on this beach, playing as mermaids and pirates, I lived so many adventures. Maybe, one day, these adventures will become stories, and these stories will become novels. This is my biggest wish for the future. There is no way for me to let my dreams die like the foam.
Christmas was as nice as possible. I am preparing my luggage to come back to the city at the side of my captain. Dad calls me from his office, he has something to show me. « Look, I found this in the attic, they gave me these gloves when I was in the army but they were too small for me ». I try them, they are made with authentic leather, they are true gloves from the Air Force officers, They keep me very warm. I look at my hands, they look really elegant. I want to thank him but he’s already gone…I’m going to keep this tear for myself.

bloodshot-eyeCamille

Dry Eye Sufferer