My Struggle with MVPS
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I was diagnosed with MVP in 1988. I was really happy to get a diagnosis, but I still didn't quite know everything that was involved with it. Frankly, I was just happy to get any diagnosis, because after years of running around to all different kinds of doctors, I was actually glad one had finally found something wrong with me. A few months after the diagnosis I learned about Lyn Frederickson's book, "Confronting Mitral Valve Prolapse Syndrome." I ordered it through the mail. The day it arrived I took it out of the mailbox, ran in the house sat down, and read it cover to cover. I can't describe how I felt afterwards. I could not believe what I had just read. It was the story of my life! There's a page in that book that lists most of the major symptoms of the syndrome. I believe there are 32 symptoms listed I happen to have all but one of the symptoms - I don't have fainting spells. So I obviously had a lot of work to do to try and get my central nervous system in balance.
The first thing I needed to do was to stop the panic attacks I had recently begun having. I was so frightened by them and worried that I was either going crazy or that I was going to die, that I couldn't possibly concentrate yet on exercise, increasing my fluid intake, or any of the treatment aspects of this syndrome. I was an absolute nervous wreck - I felt agitated 24 hours a day. I couldn't So anything alone. I remember being in the grocery store with my husband, and I was literally hanging on to him the whole time we were in there. I felt terrified, and didn't know why. It was unexplainable. I also could not stay in my own house alone. So I began staying at my parents' house, and when my husband worked the night shift I would stay at my parents' overnight. I was very lucky in that my family was so understanding of my problems. They tried to help me as much as they could. That was very difficult to do at that point because I had become so paranoid. If I got a headache I was certain I had a brain tumor. Of course the headache would go away, then I would pick out something else. I would get a pain in my calf - that was a blood clot. No one, not even a doctor could convince me I didn't have something terminal. That was definitely one of the worst points in my life.
What finally happened was my cardiologist suggested I take a beta-blocker, and after months of panicking, the attacks stopped after just ten days on the medication. For those of you who are curious, I don't remember how long I was on the beta-blocker, but when I got off of it, the panic attacks did not return. As a matter of fact I haven't had an attack in 20 years. However, I would have been more than willing to go back on the medication had the attacks returned.
After I was relieved of the panic I then felt capable of starting an exercise program, drinking more fluids, eliminating caffeine, and all of those things that I needed to do to feel better. As far as the exercise goes, I did not realize how deconditioned I had become. Because of that it took me months of gradually building up to reach my optimal amount of exercise. I'm not going to tell you how much fun exercising is. Believe me, it is not the highlight of my day. But I really need to do it because is has proven to be very beneficial. Doing it regularly has brought my resting pulse down considerably - it was very high at one time. I have so much more energy than I used to.. Fatigue was a big problem for me. exercising also lowered my cholesterol, which I needed to do so that was an added bonus. Increasing my fluid intake has also helped to alleviate my fatigue. And it did something I never expected it to do - it took away most of my dizziness. I really have to push myself to drink a lot, because I don't often get thirsty. Avoiding caffeine and sugar is my real weakness. I'm a chocoholic - have been for many years. The ultimate breakfast for me used to be a huge piece of chocolate layer cake; sounds great doesn't it? Unfortunately, I had no idea what it was doing to my body. Now, I am human, so I cannot avoid it completely, but I do know there will be a price to pay if I eat chocolate. I will get much more tired, and in general I'll just feel lousy.
Once I learned that I had this syndrome I decided to take a good look at myself. And what I realized was that I have always had anxiety. for example, I hated every day of school, from the first day of kindergarten until the last day of high school. I was a nervous child. I could never even consider extracurricular school activities. My goal was to make it through the day somehow and come straight home. Home was my comfort zone. I felt relieved and safe once I got home. And I worried about everything - a chronic worrier. On a rare day when I would wake up not worried about anything, I would worry that there was nothing to worry about! I know it sounds crazy but it's true. Keep in mind that I did have friends, and I did always go out and play and things like that, but for the most part I was merely existing, not living.
All those years of untreated anxiety led to many phobias and fears. I decided I wanted to make a big change in my life. I wanted a better quality of life, but I didn't believe I would be able to do it without a great deal of support. Change is very difficult for me. I knew I would need a lot of encourage and "pep" talks, so I recruited my own personal cheerleader, who happens to be my husband. I wouldn't be telling my story today if it weren't for the support I received from my husband. He literally held my hand the first three days I took Prozac because I was worried it would make me suicidal or a homicidal maniac. By the way, I cannot say enough good things about that drug.
Okay, so am I cured? Well, there is no cure. but I do feel a whole lot better about myself. I used to get so down on myself about my fears and phobias. The shame and guilt are so tremendous when you want to do something or when you think you can't do something that other people appear to do so easily and effortlessly, whether it be flying, driving, going out in crowds, etc. I learned not to buy into the shame and guilt. I refuse to beat myself up anymore about anything.
The way I cope is by taking one day at a time. I enjoy listening to motivational tapes. I love to play a good, loud up-tempo music on days when I'm a little down. I try to stay away from negative people. My husband helps me work on overcoming my fears. And I do allow myself moments of self-pity. There are those days when I am not as positive and upbeat as I'd like to be. When that happens I pity myself for a little while, and then I tell myself, "Now that's enough - time to move away from that and go back to being positive." And there is definitely one huge positive to having this syndrome. And that is that I do not take life for granted. You know we all know those people who complain when someone cuts them off in traffic, or when there delayed at the airport, or they have to wait in a long line for something. If I'm in those situations I'm out there living life, so I can't possibly complain. I can appreciate all the things that most people take for granted.
This is the closest I've ever been to achieving the quality of life I want for myself. It's been a struggle and will probably continue to be a struggle, but it's getting easier, and it's definitely worth it.
This recovery story is in categories: Mitral Valve Prolapse Syndrome (MVPS)