I wake up, my world is spinning. Vertigo. I blink my eyes and quickly sit up expecting it to clear with my change in position. It doesn't. I'm suddenly afraid. I jump up and grab for my water. Maybe I'm dehydrated. The vertigo becomes more violent and I fall to the floor. I don't know what time it is or how long I was sleeping. The windows are still dark. I remember that my cell phone is on my nightstand. I reach for it while holding on to my water bottle for dear life, as if it can save me from falling. I'm not falling. I'm on the floor. I feel like I'm falling. I can barely see but somehow I manage to find my sisters number. Good thing she's in my contacts. We share a house. I hope her phone is on and she wakes up. I'm afraid. I need help. It feels like forever but she finally answers. "I need help. I think I need an ambulance" I say. My sister comes running to my room. She assures me that it's going to be ok. She tells me to breathe. I tell her I need a bucket...I'm going to start to vomit. Forty minutes later the spinning stops. I make my way to the bathroom and spend another hour vomiting, then I go back to my room, prop up some pillows and try to fall asleep sitting up. I'm still really dizzy. I'm still afraid. What just happened to me?
Four months later my feeling of being constant off balance and slightly dizzy has never left. I have lost my jobs. I have done much self research and began a very restricted diet for ear health and health in general. My life has become somewhat limited but I feel the symptoms will pass completely with time and my spirits are up. I bend down to pet my puppies and it happens again. My world is spinning. I yell to my sister and she quickly helps me into my bed. I'm holding onto my blankets like so tight that my wrists are aching. I blink my eyes and try to focus on something, anything but there is nothing but circular spinning. Then the vomiting starts. My son was home visiting. He stays by my side. He is frightened to see what is happening to me. A couple hours later the spinning has stopped, I try to get up and move around a bit but now I am so dizzy that I nearly fall down. Day after day that does not change. I need help walking. I am crippled with anxiety that I cannot control. I can barely eat or sleep. It's time to go to the doctor. I've been off work for nearly 4 months. My sister picks up an application from the county and I apply for medical assistance. The paperwork takes forever to process.
Six weeks later I receive a notice that I need to re-apply because things are switching over to Obamacare. I cry. I haven't been able to leave the house. I've been bed or couch ridden for what seems like forever. I can't walk to the bathroom alone, I can't shower alone, I can't cook for myself. I can barely eat. I'm lucky to get down one meal a day. Everything makes me feel sick. I am getting vertigo attacks frequently now and I'm afraid of anything triggering another attack. I'm afraid of food. I drink lots of water to get by. I've lost a lot of weight. I catch my reflection in the mirror while I'm hobbling to the bathroom holding onto my sisters arm. I look 100 years old. I cry. I tell myself that I will be able to get help soon and someday I will have my life back.
One month later my boyfriend dumps me. He doesn't love me anymore, I'm no longer any fun. We were together for over a year. I cry. How could he care so little for me. I'm at the lowest point of my life and so desperately need the companionship. I would never do that to him, or anyone. I know it's for the best. I know he is a heartless asshole. I'm heartbroken anyway. I'm thankful for my dogs.
Three weeks later I finally get medical and go to urgent care. The doctor suspects meniere's disease and refers me to an ear specialist. Going to this appointment is the first time I've left the house since the beginning of December. It's March. I'm still really off balance but so happy to part of the world, even for a tiny moment.
Two weeks later I go see the ear specialist. I am officially diagnosed with meniere's disease. Luckily it's only in one ear. Unluckily I am nearly completely deaf in that ear already. The hearing loss was very rapid. I will never get it back. He prescribes a diuretic and schedules and MRI. He also refers me to a neurologist. The MRI was difficult. Laying down causes vertigo. I haven't laid flat for 8 months. I get through it saying a mantra that my son said to me. I love my son. My MRI shows no tumors. I'm grateful.
I see the neurologist. She tells me that I am starving myself to death. I weigh 90 lbs. She thinks I'm anorexic. I'm not anorexic. I know I'm underweight. I'm just too anxious to eat. She tells me that my off balance and dizziness between attacks is not meniere's disease. She's wrong about that. She thinks it's anxiety and malnourishment. I think how could anyone in my position not be anxious. She prescribes venlafaxine. I have always hated medications. I don't even take pain killers. I'm afraid to take it, but I do. I want to get better. The first two weeks are very scary. I'm more anxious and my chest feels racy. Then suddenly it stops. I no longer feel anxious. I'm still dizzy and off balance. I still have vertigo attacks. I'm getting used to it now.
I have been unable to work for a long time. I'm still not better. My savings is gone and I'm behind on rent and bills. I decide to apply for disability. My landlord doesn't want to wait. I get evicted. I'm homeless.
I have a pull behind camper. I park it behind a friends garage in the alley. I live there. There is a factory across the alley. My view is a white brick wall. I spend a lot of hours staring at that wall. I have no money so the only food I get is from the local food shelf. My neurologist wants me to eat 6 times a day. I eat 2 times a day. It's better than none.
I have been feeling better so I go out with my sister. We go to a local bar to see some friends play music. A small acoustic band, just a guitar and washboard. I think that will be okay. I spend much of the night on the patio so the noise and motion and lighting don't make me too dizzy. My sister is with me. We decide to go back inside. It only takes a minute and I feel the vertigo coming on. I head for the door. By the time I get there I am falling into it. People are staring. I slide along the door and around the corner and slide down the building to the ground. I can see my jeep, it's only two car lengths away. I can't get to it. I call my sister and tell her I'm outside and need help. She helps me to the jeep. I spend the next few hours in the jeep spinning and vomiting. I decide it's not a good idea to go out to the bar again.
I go to visit my niece in the country for the fourth of July. I have a pretty fun and relaxing weekend. I've gained 4 pounds and am feeling pretty good. After the weekend I go to visit my elderly parents. I'm excited for them to see me doing better. My first evening there I have a vertigo attack. Then another, and another. One lasts 16 hours. I don't ever make it back to my camper behind the alley. My brother pulls it to his house in the country for me. I decide to stay with my parents. It's close to my doctors. I begin to realize that I am never getting my old life back. Ever.
Another sister is in town visiting from Colorado. The family decides to all have dinner out. I am too dizzy to go. I stay home. I am sitting in the porch at my computer surfing the web. I adjust in my chair and the slight movement throws me to the floor. It feels like someone shoved me. I hit the patio chair when I fall and hurt my ribs. The vertigo goes one way and then the other. I feel like someone is violently pushing me back and forth. I yell "help me, help me" and then I realize I'm alone. It only last a few minutes. It takes 6 weeks to heal my ribs. My ear specialist has a long word for these attacks. Meniere's sufferers call them drop attacks. I hate drop attacks.
I keep pushing through, day after day, week after week, month after month. Eventually I am approved for disability. When I get my first payment it has been 18 months since I have received any income of any kind. I receive less than half of what my working income used to be. I'm grateful to be getting anything.
It has been 2 and 1/2 years since that first vertigo attack. I have learned to live my new life with meniere's disease. I've learned to ignore peoples judgments. They don't understand what it is to live with an invisible illness. I do.
What chronic illness means to me is that I may never date again, I may never get married, I may never travel to the places I've always wanted to go. I have adjusted my dreams by necessity. I no longer see live music indoors, I rarely eat out, my diet will always be restricted. I can't go to movie theatres. I have to wait for the DVD. I can make plans but I prefer not to. At a moment's notice vertigo can hit and my plans will be cancelled for an undetermined amount of time. I enjoy the periods of time that I feel a bit better and I live with the insecurity of knowing that things could get bad again at anytime and for any duration. There is not much to be done for meniere's disease. My ear specialist recommended that I learn to live with it. That is what I'm doing.
Chronic illness means never giving up, refusing to be defeated by my own body, refusing to let my illness have my whole life. It means finding joy in everything I can and letting myself cry like a baby when it all gets to be too much. Chronic illness means loving myself enough to not care what anyone else thinks and loving myself enough to ask for help when I need it. It means loving the new me even though I deeply missing the old me. I have made peace with meniere's disease and that gave me my life back.
Four months later my feeling of being constant off balance and slightly dizzy has never left. I have lost my jobs. I have done much self research and began a very restricted diet for ear health and health in general. My life has become somewhat limited but I feel the symptoms will pass completely with time and my spirits are up. I bend down to pet my puppies and it happens again. My world is spinning. I yell to my sister and she quickly helps me into my bed. I'm holding onto my blankets like so tight that my wrists are aching. I blink my eyes and try to focus on something, anything but there is nothing but circular spinning. Then the vomiting starts. My son was home visiting. He stays by my side. He is frightened to see what is happening to me. A couple hours later the spinning has stopped, I try to get up and move around a bit but now I am so dizzy that I nearly fall down. Day after day that does not change. I need help walking. I am crippled with anxiety that I cannot control. I can barely eat or sleep. It's time to go to the doctor. I've been off work for nearly 4 months. My sister picks up an application from the county and I apply for medical assistance. The paperwork takes forever to process.
Six weeks later I receive a notice that I need to re-apply because things are switching over to Obamacare. I cry. I haven't been able to leave the house. I've been bed or couch ridden for what seems like forever. I can't walk to the bathroom alone, I can't shower alone, I can't cook for myself. I can barely eat. I'm lucky to get down one meal a day. Everything makes me feel sick. I am getting vertigo attacks frequently now and I'm afraid of anything triggering another attack. I'm afraid of food. I drink lots of water to get by. I've lost a lot of weight. I catch my reflection in the mirror while I'm hobbling to the bathroom holding onto my sisters arm. I look 100 years old. I cry. I tell myself that I will be able to get help soon and someday I will have my life back.
One month later my boyfriend dumps me. He doesn't love me anymore, I'm no longer any fun. We were together for over a year. I cry. How could he care so little for me. I'm at the lowest point of my life and so desperately need the companionship. I would never do that to him, or anyone. I know it's for the best. I know he is a heartless asshole. I'm heartbroken anyway. I'm thankful for my dogs.
Three weeks later I finally get medical and go to urgent care. The doctor suspects meniere's disease and refers me to an ear specialist. Going to this appointment is the first time I've left the house since the beginning of December. It's March. I'm still really off balance but so happy to part of the world, even for a tiny moment.
Two weeks later I go see the ear specialist. I am officially diagnosed with meniere's disease. Luckily it's only in one ear. Unluckily I am nearly completely deaf in that ear already. The hearing loss was very rapid. I will never get it back. He prescribes a diuretic and schedules and MRI. He also refers me to a neurologist. The MRI was difficult. Laying down causes vertigo. I haven't laid flat for 8 months. I get through it saying a mantra that my son said to me. I love my son. My MRI shows no tumors. I'm grateful.
I see the neurologist. She tells me that I am starving myself to death. I weigh 90 lbs. She thinks I'm anorexic. I'm not anorexic. I know I'm underweight. I'm just too anxious to eat. She tells me that my off balance and dizziness between attacks is not meniere's disease. She's wrong about that. She thinks it's anxiety and malnourishment. I think how could anyone in my position not be anxious. She prescribes venlafaxine. I have always hated medications. I don't even take pain killers. I'm afraid to take it, but I do. I want to get better. The first two weeks are very scary. I'm more anxious and my chest feels racy. Then suddenly it stops. I no longer feel anxious. I'm still dizzy and off balance. I still have vertigo attacks. I'm getting used to it now.
I have been unable to work for a long time. I'm still not better. My savings is gone and I'm behind on rent and bills. I decide to apply for disability. My landlord doesn't want to wait. I get evicted. I'm homeless.
I have a pull behind camper. I park it behind a friends garage in the alley. I live there. There is a factory across the alley. My view is a white brick wall. I spend a lot of hours staring at that wall. I have no money so the only food I get is from the local food shelf. My neurologist wants me to eat 6 times a day. I eat 2 times a day. It's better than none.
I have been feeling better so I go out with my sister. We go to a local bar to see some friends play music. A small acoustic band, just a guitar and washboard. I think that will be okay. I spend much of the night on the patio so the noise and motion and lighting don't make me too dizzy. My sister is with me. We decide to go back inside. It only takes a minute and I feel the vertigo coming on. I head for the door. By the time I get there I am falling into it. People are staring. I slide along the door and around the corner and slide down the building to the ground. I can see my jeep, it's only two car lengths away. I can't get to it. I call my sister and tell her I'm outside and need help. She helps me to the jeep. I spend the next few hours in the jeep spinning and vomiting. I decide it's not a good idea to go out to the bar again.
I go to visit my niece in the country for the fourth of July. I have a pretty fun and relaxing weekend. I've gained 4 pounds and am feeling pretty good. After the weekend I go to visit my elderly parents. I'm excited for them to see me doing better. My first evening there I have a vertigo attack. Then another, and another. One lasts 16 hours. I don't ever make it back to my camper behind the alley. My brother pulls it to his house in the country for me. I decide to stay with my parents. It's close to my doctors. I begin to realize that I am never getting my old life back. Ever.
Another sister is in town visiting from Colorado. The family decides to all have dinner out. I am too dizzy to go. I stay home. I am sitting in the porch at my computer surfing the web. I adjust in my chair and the slight movement throws me to the floor. It feels like someone shoved me. I hit the patio chair when I fall and hurt my ribs. The vertigo goes one way and then the other. I feel like someone is violently pushing me back and forth. I yell "help me, help me" and then I realize I'm alone. It only last a few minutes. It takes 6 weeks to heal my ribs. My ear specialist has a long word for these attacks. Meniere's sufferers call them drop attacks. I hate drop attacks.
I keep pushing through, day after day, week after week, month after month. Eventually I am approved for disability. When I get my first payment it has been 18 months since I have received any income of any kind. I receive less than half of what my working income used to be. I'm grateful to be getting anything.
It has been 2 and 1/2 years since that first vertigo attack. I have learned to live my new life with meniere's disease. I've learned to ignore peoples judgments. They don't understand what it is to live with an invisible illness. I do.
What chronic illness means to me is that I may never date again, I may never get married, I may never travel to the places I've always wanted to go. I have adjusted my dreams by necessity. I no longer see live music indoors, I rarely eat out, my diet will always be restricted. I can't go to movie theatres. I have to wait for the DVD. I can make plans but I prefer not to. At a moment's notice vertigo can hit and my plans will be cancelled for an undetermined amount of time. I enjoy the periods of time that I feel a bit better and I live with the insecurity of knowing that things could get bad again at anytime and for any duration. There is not much to be done for meniere's disease. My ear specialist recommended that I learn to live with it. That is what I'm doing.
Chronic illness means never giving up, refusing to be defeated by my own body, refusing to let my illness have my whole life. It means finding joy in everything I can and letting myself cry like a baby when it all gets to be too much. Chronic illness means loving myself enough to not care what anyone else thinks and loving myself enough to ask for help when I need it. It means loving the new me even though I deeply missing the old me. I have made peace with meniere's disease and that gave me my life back.