The following story is a day in my life. June 12, 1998. This day is a very difficult day. This is written in hopes that the friends and family of Meniereís patients may get a better understanding as to the challenges and constant misunderstandings that we endure. I have learned to live with my limitations, and I am coping. I have a great deal of support, and help from friends and family. Thanks to the many people that I have corresponded with over the Internet. No matter what, there is always a way to carry on. :)
8:00am - It is a Sunday morning. I wake up. Everyone is still asleep. There is an old movie on the
TV set that I left on. I left it on because, the tinnitus (or ear ringing)was so loud, that I had to have as much
noise as possible around me, to drown it out.
I get up and sit on the edge of the bed. I feel sick all over. The pressure on the right side of my head is terrible. I know if I get up a bit, I usually feel a little better. So I get up. It is an usually cold, Central Florida morning, so I put my coat on and go out to get the Sunday paper. As I walk through the living room, I get very lightheaded. I open the front door and walk about 30 feet to get the paper. As I lean down to pick it up, I am reminded how hard it is to bend over sometimes. Today, I get a very hard RUSH whenever I bend over.
I carry the paper in the house and set it on the kitchen table. As I walk back to the bedroom, I realize that it is going to be a particularly bad day. In the bathroom, while sitting on the stool, the ear ringing(in both ears) is so loud, I just want to scream! It sounds like a choir of crickets, and hasnít shut up for over 18 years. My little Rat Terrier, Chip, comes in to see me. He is genuinely concerned and wags his short tail, wishing me a good morning. If only everyone was like you Chip, what a beautiful world we would live in.
I sit back on the bed, feeling very nauseated. If only one of my semi-remission periods would return. My semi-remission periods, I am referring to, are times when the Meniereís is bearable. On those days I can go over to my momís. She lives only 3 streets over. so I can drive that, most of the time. I go over there and walk around the yard for 20 to 30 minutes. Afterwards, I sit down for a while and talk to my mom about things for maybe 30 minutes or so. Then I head back home. I feel a little better after the walk so I try to do a few things around the house to help Alice. I try to keep the ice trays dumped . I also make sure the bathroom trash and the other trash receptacles are kept emptied. Then Iíll have breakfast. I may fix myself a couple of muffins, with cheese and tomato, or maybe add a couple of eggs. Or I will juice some vegetables and fruits. Itís a lot of work to juice, but it is worth the effort. On a good day I usually rest for a little while after breakfast. I may answer some email from my website. I correspond with a lot of people in predicaments like mine. It helps a lot to know that I am not alone. For most people with Meniereís, you are very lucky, if you can find one person to believe in you and understand. My Alice is very understanding, and would do so much more for me, if I would let her. But, I like to do for myself. I value my independence so much! Besides, no one likes to feel like they are a burden on their loved ones.
The people I email correspond with, help make a big difference in my life also. I am slowly developing a very special group of friends. Friends that understand what I go through. Friends that know I am not crazy or lazy. Friends that are truly concerned and are looking for the same answers as me. Friends that know what it is like to lose your credibility among most people in your life.
So after this,on a good day, Chip and I usually take a nap for at least a couple of hours. It seems like quite a while, since I have had a good day, one where I had a feeling of accomplishment. Later, (on a good day), I will get up and do some things with the kids or work on a minor project. On Saturdays I try to do routine maintenance on the car and truck. I use Saturdays, because I have Benny, my 12 year old son, to check the tires for me. The bending over is often difficult. But I still check the oil, water, other fluids, and make a visual inspection. We check the electrical system, lights, horns, turn signals and such
So I go back to my bedroom and lie down for a while, feeling rather rotten.
9:00am - I check my email. Nothing yet, It is still kind of early. I remember that my 13 year old daughter Liz, gave me some numbers to play for the Florida Lotto, so I go back in the living room to get Section B of the paper, and check the numbers. Benny is on the couch watching TV. I thank him for not burning the house down, when he made some French toast(the toaster oven kind). From the aroma, it is a wonder he didnít set off the smoke detector. I get back to my desk and check the numbers, Shoot! only 2 numbers. Well, maybe next week. I am going to try to go up to Momís and walk, around 10 or 10:30am. So I am going to have to rest for a while. I donít usually eat breakfast till I have walked.
9:30am - I get up to try to eat something. That usually helps the nausea. I try to get some muffins, but decide I will try to juice some fruit and vegetables. It takes quite awhile to drag myself around the kitchen and dining room to get things out of the refrigerator and get the juicer ready. I wash off, apples, carrots, celery, cucumber, a few grapes and cut a piece of cantaloupe. This is getting harder and harder to do. I get out the cutting board and sit at the table cutting everything up to juice. Benny sits across from me, and still thinks it is funny, that my speech and hearing isnít what it used to be. I remind him if he speaks low and fast I canít understand him too well. Or I will hear something different from what he says. When he says something I will repeat what I thought he said, and if it sounds ridiculous, then it is funny, but not to the person trying to hear. So I remind him for the ten thousandth time, that I have inner ear disease. It is destroying my balance and hearing and I cannot do what I used to. That is why I am no longer working. He says OK, but I know in ten minutes he will forget.
I finally get the juicer ready, and juice. I take the juice and blend a banana in it with the blender. It is very good and usually makes me feel better for a few hours. Then I have to clean up the juicer, wash off the table, dispose of the pulp and cuttings. Wash up the other utensils, and straighten up the table a bit. Now I need to go rest for awhile. The pressure on the right side of my head and in my left ear is getting very bad. I have trouble walking, and even thinking straight. I take a half of a 5mg of Diazepam(generic Valium). The last 2 weeks, I have had to take it almost every day. I try not to, but sometimes have to. It is the only thing that helps any at all.
Back in my bedroom, I just remember it is Valentineís Day. This is the first year that I wasnít able to go get Alice something. I just havenít been able to do much at all lately. I talked to her about it several times, and she said it was all right, but it is not all right with me. It makes me feel useless! But what can I do? I guess I could have begged someone else to take me somewhere, but that is not me. Besides, everyone always has something else they have to do, and I am not about to kiss anyoneís but at this point in my life.
10:30am -OK, enough feeling sorry for myself, I need to rest a few minutes, so I can try to drive a couple of blocks to momís and walk for about twenty minutes.
11:00am - I get in my truck and head towards Momís house. Driving is not hard today, besides it is such a short distance. At Momís I close the gate and she lets her Pug dog, Jeannie, out to walk with me. The yard is about an acre and a half I guess, takes almost 4 minutes for each lap. Each lap I stop and get a sip of water from my water container. It is difficult, and I take a minor rest break after each lap. by leaning inside my truck window for about 60 seconds or so.
My mom says, "You must be feeling better today! Your color looks much better!" I didnít feel a whole lot better, but it was much easier to agree with her, so I did. So after walking I sat at her kitchen table till about noon, and then went back home.
noon - I get home and fix some muffins and eggs. I am feeling a little better. The pressure seems to have subsided some. My 15 year old daughter comes in, very happy about the concert, that she and Carly went to yesterday. Then a moment later she is upset about something. I ask her what, and she says it is the house. Actually it is a combination house and trailer. It is kind of run down, but it is roomy and the rent is cheap. You see, most people with inner ear disease, almost always have financial problems. Missing a lot of work, medical bills, normal every day things to raise kids, etc.. We will probably have to live here another year, because we need to get another car, with our tax refund. The old Buick has 176,000 miles on it...you know, and my truck is a 1979 Chevy.
Also, we had to take a bankruptcy in December of 1997, after much, much creative financial living over the years,(second mortgage, unsecured credit cards, and such) we finally were in over our head. I am not sure if we can qualify for a car loan but we are going to try. Maybe next year we can get a better place to live, but we may have to wait longer.
So, the house is no show place, and the kids, do not want their school friends to see it. I can understand that. But at present, I canít do much about it.
I am not complaining. Most people in my situation are in much worse financial condition. I get a descent pension from my employer. It is not a lot, but more than so many other people. Many people are single parents, trying to raise kids, and too ill to work, with nobody really caring. Especially many women with this disease. So many times, their husbands leave them, and they are stuck with the kids, being the only REAL parent, and doctors that do not believe them. Plus they have not made as much money as their male counterparts, and have less to draw on, if they can get some type of aid.
I have read places that many doctors take women less seriously than men. That is why, men have more heart attacks, but women more fatal, first time heart attacks. I am not sure as to the reasoning, behind this. Perhaps it is because most men donít see a doctor, until their wives literally force them. Or it could still be some kind of double standard.
Sorry I may have gotten off the subject, but this is so important it bears saying and repeating if necessary!
1:00pm I am checking my email and writing some letters. Alice comes in. Something has to be done with Benny. The kids are having a terrible fight, and will not cooperate. Now I am supposed to avoid stressful situations. SO, in order to keep my cool, I am giving myself a little time, until I go out and be "The Bad Guy".
2:30pm I have just spent the last hour and a half with Benny, my 12 year old son. He is at that stage, where he believes that he can lie his way out of trouble. And I keep showing him, that he cannot. I sat outside and watched him as he did yard work. I hoped it would help him blow off some steam. I have taken away his TV, videos, almost all privileges, because he is deliberately doing poorly in school and constantly lying. He still insists that he did not kick his sister, when, his own mother saw him do it. We talk for a good 45 minutes, outside. I try reasoning, punishment, diplomacy, psychology, reverse psychology, and nothing seems to make him understand, that he cannot lie his way out of things! I need to lie down, because the pressure is getting intense, and I feel quite ill.
5:30pm - Liz, my 13 year old daughter comes in to wake me up from my nap, and ask me if I feel like driving her to Momís to walk her dog. Lately we have been going up there, because Mom is afraid something will happen to her pug dog. I get up and after 15 minutes of struggling around, I make it out to the truck. After a nap, I am a bit groggy, but feel like driving the short distance to Momís. When I am leaving, Alice tells me about how terrible the kids have been acting, and I ask her to please wait till I get back, so I wonít get stressed out, before I drive. We stay there till a little after 6:00pm and then come home.
6:45pm - We have dinner. Benny acts like a complete fool. All the kids are acting pretty silly. I donít mind that, but there is arguing and I try my best to put a stop to it. Dinner is finally finished
7:00pm - I remind Benny,again, how important it is to tell the truth. I donít think I have gotten through to him yet.
7:15pm - I go into my room and hook up to the Internet, My escape from the real world, or so it seems. I answer a few emails, and send a few electronic Valentineís Day cards. The first one I send to Alice, apologizing for such a rotten day, thanks to the kids. Then I send a few more. I visit my website and check my other email boxes. Now it is about 8:30pm and I am ready to go off-line and see if any of the kids have killed each other.
9:35pm - I have just finished another long talk with Benny, my 12 year old son. I have once again, explained to him about inner ear disease, and the importance of telling the truth, but I have no idea if I have made any impression on him at all. The stress causes me so much misery, and I try to explain that to him, but, it just doesnít get through. Maybe if he reads this someday......who knows?
The pressure in my left ear and the right side of my head is almost unbearable. The tinnitus is extremely loud. I am very lightheaded and unsteady. Guess Iíll check my email. The Net seems to help take my mind off of things.
10:35pm - Alice comes in, exhausted. The kids were a lot of trouble today. I got off the net and we talked for a while. She was going to get up and take a shower, but fell asleep.
11:20pm - I get back on the Net and surf around for a while. Finally, getting tired, I decide to go to bed.
12:40am - I go to bed. Ready for another day. At least the kids will be in school tomorrow. Today was not a real bad day. It was actually an improvement over the past few weeks.
2:00am - I wake up, unable to sleep. Chip and I go into the living room and watch the History Channel for an hour. Feeling tired we go back to bed. I sure wish things could be different.
My story may or may not be typical of Meniereís patients. One thing for sure, you can't tell by looking at us, just how much we are suffering! Many people are in terrible misery with the bad spinning vertigo and extreme hearing loss. As miserable as I sometimes am, I consider myself lucky compared to most. I have a wife that cares and understands, and people to talk to, now that I started my website. I hope someday, something can be done about inner ear disease, but I really do not know what and when. But, if we don't believe a cure is possible, it will never happen!
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