For those who don’t follow me on Facebook, it’s been a particularly tough two days for me. I’m trying to be as strong as I can, to tough things out, but honestly, I realise I’m not a strong or tough person in a lot of ways. I’ve been fortunate in that I’ve survived some dark times, but I always had a sense that ultimately, my survival and how I navigated through the world following those dark times was up to me.
When it comes to illness, it’s not up to me. It’s up to science, up to medicine, up to God, up to the sheer luck of getting the right doctor who might prescribe the right thing, make the right diagnosis, order the right test. I do not always feel confident that I am going to be able to pull through this particular time in my life, I do not always feel confident that I received the correct diagnosis from the correct doctor. I waver back and forth from agreeing that it’s all a simple psychological problem, it’s all “in my head”, to feeling that the unexplained symptoms that doctors try to hide with pills or dismiss as unimportant because they don’t fit with any logical, simple diagnosis are important, and that I am in fact a very ill person that isn’t being heard.
Over the weekend, I made the resolution that on Monday, I was going to start dropping the amount of beta-blocker, a particularly side-effect-laden pill called Atenolol, I’ve been taking for about 6 months. A quick search on the Internet turned up countless message boards from people on this drug, wondering how to deal with the side effects. I made it through the initial phase of feeling to exhausted to move and actually became functional on Atenolol. However, I gained 25 pounds in 6 months, and when doing a Google search on this, found numerous medical studies that suggest a link between beta-blockers, obesity, and type 2 diabetes. I learned one in 5 adults today is currently on a beta-blocker; they slow down your heart rate and your BP, they treat anxiety, and are essential to people suffering from certain heart conditions.
The problem is, they are overprescribed, and once you’re on them, it’s very tough to get off of them. The withdrawal symptoms are so unpleasant that it hardly seems worth it to get off a drug whose major side effect is making you fat and sleepy, when the alternatives include heart palpitations, insomnia, depression, high blood pressure, and a host of other “rebound effects”.
I was prescribed a beta-blocker because I had a pulse of 120 for an extended period of time, and my body was releasing adrenaline constantly, causing me to have sometimes as many as 8 panic attacks a day. I do not know if this was a result of the infection I had that doctors claimed led to the development of my vestibular disorder, or due to an anxiety-related condition. My blood pressure was only slightly elevated, and since being on the beta-blocker, my panic attacks have ceased, but my blood pressure has become exceptionally low. Meanwhile, weight gain and being tired all the time are making it more likely I’ll develop heart problems.
A while back, two different doctors had given me the OK to cut my Atenolol dose in half, to see if this decreased the side effects. I’d never done this, because I was scared to mess with what was working. I’d been able to function like a normal person much of the time lately, stopped feeling convinced I was going to die, but hated myself for feeling fat, lifeless, and dependent on pills. Yet, I was afraid to make a change because I didn’t want a huge setback. I never found out why I mysteriously had heart problems when I’d always been active, energetic, and at the time of my illness, walked miles every day. I was at a relatively healthy weight, didn’t have the best dietary habits, but also didn’t have any significant health issues—mental or physical.
There was no explanation for why my heart should suddenly go out of control, not even the vestibular and panic issues the last doctor diagnosed me with, and it causes me a lot of anxiety to think that it might happen again…or, worse yet, suddenly stop.
Yet, reading about other people going through stories like mine, how a drug that helped them feel better was actually destroying their health and quality of life and ability to live life fully…it was enough for me to decide that I had options. One was to cut down on this pill to see if I really needed it, and if I do, why? What’s wrong with me that I need a heart-related medication to feel well and function properly? A visit to the cardiologist yielded no answers back at the beginning; he didn’t examine me, and ran a test to see if there were any physical abnormalities within the structure of my heart, and dismissed me with “You have anxiety. Go to a psychiatrist.”
I am still anxious, still scared. I’ve made it through two days on half a dose of this drug, and nothing about it has been easy. Every hour feels like three. Just moving makes me feel exhausted. I wonder if I’m going to wake up in the morning when I go to sleep, or my heart is just going to get tired and stop. I am afraid I won’t have enough time left to do everything in life I want and need to do.
I am afraid I am dying, and unlike those who suffer from something that is sometimes actually fatal, I have nothing to base that on except an internal feeling, and the fact some scary medical problems happened to me that countless tests and doctors couldn’t adequately explain.
I feel like there are too many things left for me to do in this world to die now. There are too many loose ends, things (good and bad) I never said to people that I’d want them to know, things I never took the chance on because I believed in myself too little, mistakes I never recovered from and others won’t let go.
I want a second chance. I want to be healthy, mentally and physically. I want to do more and be more and share more and touch the lives of others more. I want to make a difference, to be here for a reason, to be loved.
People my age, and far younger, die every day. Nobody is immune. But there are phases where I become convinced I need to get my affairs in order, that I won’t be here for as long as I need to…and maybe I won’t be healthy enough to make the most of those days during the time I’m here.
I worry that one day I won’t wake up, and all these people will never know how much I loved them, or respected them, or thought the world of them, but never said so, because people just don’t say things like that…and when they do, it is so often misinterpreted. I worry that people will say things like “She was a girl who had so much potential”, meaning I never actually accomplished anything of note with my life. I wasn’t all the things our society values; a rich, hot girl busy climbing the corporate ladder, or a loving wife and mother who took care of everything and everyone.
Instead, I lived my life like it was a never-ending 1920′s salon, full of art and witty people and intelligent conversation and food and cocktails and music and sex and life. Someone once told me my best quality was my joie de vivre, the ability to enjoy life when the world around me is going to pieces. In retrospect, that seems a little shallow to be one’s best quality. I don’t think I ever had it in me to be the kindest, the smartest, the prettiest, the most talented and accomplished girl in the room, but I think I have something rare I should have made better use of, but didn’t. Perhaps it’s because I didn’t know what to do, or was afraid of rejection,of being ridiculed and used and gossiped about, or because I just didn’t believe I was special.
Looking back, that seems silly to me. Once upon a time, I had health and energy and youth and vitality, and could have taken a world full of chances I didn’t. Now, I don’t know if I have enough energy to get out of bed, or I can make it to dinner without falling to pieces.
Sometimes, I’m really scared. That’s how I’ve been feeling lately…just scared, and alone, and like nobody understands. Yet, I don’t want to be alone. That’s my greatest fear in the world, dying alone when there’s still so much more I want from the world. When you’re ill, everyone seems to disappear, save those few close friends and family that will always be there, and most friendships seem remarkably shallow.
I wish I’d been the kind of person in my life that bothered to connect more; not just to know people or to be recognised or admired at parties, but to get to know people on a level that really matters. It took me three decades to figure out that being the most popular girl in the world didn’t mean being the most well-liked, and it doesn’t mean feeling the most loved and supported. It just means you’ve met a lot of people. I wish more people had known me, the real, authentic person who always felt too much and loved too much and cared too much about everything.
I wish I hadn’t made so many mistakes and acted as if life is a party destined to go on forever. Inevitably, it won’t.
I don’t know what’s wrong with me, or how to fix myself, or how to find peace when every day is a struggle. All I know is that if life is a party, it’s still early, and I’m not ready to go home yet.
