I’m truly feeling at the end of my rope with this “mystery illness”, and associated symptoms. It’s greatly impacted the quality of my life, caused me to become both anxious and depressed, and I don’t know what to do anymore. I feel as if there’s nowhere to turn for help, and nobody is listening, which is very frustrating.
It’s been difficult not to become depressed as a result of all of this. I largely miss the kind of person I used to be, who was not always the most laid-back, but free-spirited and full of life and adventure. Nowadays, neither my mind nor my body remember that person. The day before I got sick, I was on vacation with my younger brother, and walking 4 miles a day, and feeling in love with so many things about life. Most days, I’d give absolutely anything just to have that back.
Everyone is worried about me; friends, family, even people who don’t know me personally are sending me Facebook messages and e-mails, offering support and telling me about their own struggles. And yet, although I’m lonely and bored to death most of the time (for an extrovert to suddenly live in a world consisting mostly of thoughts, quietude, and one’s own company is also sometimes the catalyst for depression.), my reaction to all of this is to hide myself away. There are only a few people I can handle seeing, and large group events or overcrowded spaces panic me.
It’s ironic. A former stage performer, event planner, and life-long social butterfly who misses living in the most overcrowded city in America has now developed social anxiety.
I suppose it’s just fear, and I don’t know how to make myself strong enough to get past the fear. I wonder what will happen if I have negative physical symptoms, which then spiral into a panic attack, when I’m out in public. I’m afraid everyone will stare at me, or judge me, or pity me. I’m afraid ex-boyfriends and former friends will say “I knew I was right to get away from that crazy chick.”. I’m afraid gossipy and less than well-meaning people will simply use my struggles as conversational fodder. I’m afraid my enemies and haters will see my vulnerability in all its exposed glory, and use it against me (like the Mother Of The Guy I Am Currently Dating telling me I’m nuts, and even strangers see that I’m psycho, and repeatedly wishing for my death.).
I feel like both my good friends and The Guy I Am Currently Dating deserve better than what I can currently give them. I want to attend social occasions, but at the same time, I know everyone would be happier, calmer, and more relaxed without me there to bring them down. I value my relationship, but I feel like The Guy I Am Currently Dating should be with someone who is happy, capable of enjoying life, and won’t hold him back. We used to have so much fun together, and I feel like he should have that back in his life again. He is older than I am, both in physical age and in spirit and overall level of maturity, and I feel like he should be out there exploring all the good things life has to offer, rather than dealing with an emotional basketcase who may also be physically ill, and either way, incapable of keeping up or really participating in life. I’ve been good about keeping up with everyone on e-mail, spending a lot of time on Facebook and having extended phone calls with friends, because I feel I can offer more at a distance than I can in person.
And so I am often lonely, but feel the need to keep the world at a distance. Some days, I just try to invent ways to wish myself away, because I so desperately miss many aspects of my life as it used to be. I took so many things for granted, and now that things as simple as eating at a restaurant are a challenge, I wish I could have had all that time back when I could have done anything I wanted to do.
For a while, I hoped each doctor I’d see, each medication, would somehow be a magic solution. But, with every test that came back negative, every pill that had negative and intolerable side effects, or made me feel even more removed from health and reality, I stopped hoping. I stopped praying, and writing in my journal, and reading things about “positive thoughts” and “creating a happier universe”. I just got so tired of hoping, and then feeling crushed when there were no solutions to be found.
Now, I’m afraid I’ll never be that person I used to be, the one who loved life and adventure and people and being the centre of attention. I’m afraid I’ve lost some essential part of myself I no longer know how to reach…and the more I hear that my symptoms aren’t real, aren’t physical, and are just in my head, the more I’m becoming convinced that I’m really going crazy. And yet, somehow I *know* I’m not. I’m a very highly intuitive person, particularly when it comes to how I feel, physically and emotionally. I’ve spent my life dealing with issues on both ends, and actually know a pretty decent amount about medicine for a layperson. I self-diagnosed my appendicitis at the age of 10, and would go to the pediatrician to inform him I was suffering from chronic sinusitis, or pneumonia. (and although my precocious and arrogant approach made him laugh, I was always right.) I’ve been able to handle extreme amounts of stress, from losing loved ones, surviving potentially fatal situations, suffering from PTSD, losing my home, friends, and all my possessions, moving to Atlanta to start a new life with someone who then left me, and being totally on my own, and even a trip to the county jail, without anything approaching a panic attack or anxiety-related situation. So, all of the sudden, to be told that I’m having an anxiety disorder, that I can’t handle stress, that I may be bi-polar, and a host of other things that make doctors disregard my physical symptoms as “all in my mind” doesn’t add up to me. I freely express my emotions. In fact, I express how I’m feeling too freely , most of the time. I have friends I talk to often about my life. I write about and acknowledge my feelings. I am not the person who keeps everything in until she explodes.
And while I’m willing to admit I now have an anxiety disorder, and a subsequent addiction to a certain prescription medication they’ve put me on to manage my symptoms, I’d like to think I’m mentally and emotionally strong enough to cope with both. But, once the physical symptoms get involved, I can’t. I’m not in control anymore.
My “attacks” always start the same way; with a sudden recognition that I’m very dizzy, and a warm flush moving through my body…like the world is moving, even though I know logically I’m sitting still. Then, my heart feels like it’s skipping a beat or two, and panic sets in. I start to feel very out of control. Prior to being on beta-blockers, my physical response to panic was escalating my pulse to dangerous levels. These episodes aren’t a result of stress; they can just come out of nowhere. Before I was on any sort of medication at all, these “episodes” would often be followed by uncontrollable shaking, numbness in my fingers and toes, and symptoms mirroring that of a migraine, particularly extreme sensitivity to light and being touched. I’d feel a huge “woosh” sound in my ears, and feel spasms of something directly under my ears, like a bothersome pulsating feeling, or just a quick “jump”. I had to wear my sunglasses indoors, to work at my computer, and spend 20 hours a day in darkness. Then, they started me on Diazepam (Valium), and my symptoms all mysteriously vanished for two weeks. When they tried to take me off of it, not only did my panic reaction get out of control, but all these physical symptoms returned. In addition, I’ve gained 8 pounds without changing my diet since starting the beta-blockers and Dizepam.
I’m still convinced that something is physically causing these symptoms, which has since given me an anxiety disorder, rather than the other way around. There is a history of epilepsy in my family, and I know Diazepam is often included with anti-convulsant treatment, because members of my family are on this drug. I’ve also had a seizure while on sinus medication, and symptoms mirroring that of a stroke on an anti-anxiety medication. I have negative neurological reactions to a majority of medications, which is why I’ve known not to mess around with drugs or abuse the over-the-counter sort to deal with not feeling well. I’m wondering if these “episodes” are in fact a form of petit mal seizures, though none of my doctors have run an EEG on me to rule this out, and I haven’t emphasized it because I don’t want them to think I’m suffering from hypochondria. I’m actually not…I’m just a highly intelligent person who read too many medical books in her younger years. But I’m also very in tune with my body, and I truly believe that physically, something isn’t right with me. I also have faith that if they were to identify the problem, I could work with finding ways to cope with the non-physical anxiety response, since I have always seemed to be able to handle stressors that aren’t related to physical reactions perfectly well.
Throughout my life, I’ve suffered from chronic ear and sinus problems, which turned into what I thought were allergies a few years after moving to Georgia. I quickly became addicted to using over-the-counter nasal spray and Benadryl to deal with my symptoms, for nearly a decade.A visit to the allergist confirmed I’m actually not allergic to anything. From what I’ve read, these physical symptoms could also be coming from problems relating to sinus and Eustachian tube issues, problems that have solutions.
The trouble is, I get very depressed because I feel like everyone’s stopped looking for solutions. Once they label you as someone suffering from a mental or emotional problem, the physical side of things gets very quickly disregarded, because it’s easier to say “Take this pill” than to look into what initially set off the chain reaction of events. I had no symptoms whatsoever of anxiety or depression before these physical symptoms appeared—I didn’t even know what a panic attack was—and when I feel physically well, I feel close to my old self again. Recently, I even made it out for martinis with a friend, and didn’t think about illness or doctors or anxiety for hours. Yesterday, I went to a friend’s birthday party, and tried to feel normal…but felt largely “spaced out” and tired, which I attributed to the recent problem with regulating my Diazepam and my bad reaction to Xanax. However, I was laughing and having fun, and all of the sudden….BOOOM! The dizzy feeling hit me, setting off a chain reaction of events. I was able to control my panic response, but by the time I got home, I felt very disconnected from myself, exhausted, and had a headache, and intolerance to bright light and loud noise.
I truly believe that physically, there is something not right with me, and just telling me to see a psychiatrist and putting me on drug after drug is a treatment designed to mask the symptoms and make me feel better (which I appreciate), but doesn’t solve the problem. The rational side of me thinks that solving the problem is the best cure for helping to get the emotional side of me under control, and it frustrates me that most doctors I’ve talked to do not share this viewpoint. Perhaps I’m wrong, but how do you just explain that intuitively, you “know” something…and that intuition has rarely steered you wrong, as it applies to knowing yourself. That isn’t rational, and members of the medical community will always disregard that…but I believe that intuition is a powerful thing, especially from one who has been consistently able to identify problems with her body from a very early age.
I’m not going to start taking Prozac or Paxil or Zoloft or whatever because the doctors think a psychological issue makes more sense than a less obvious physical one. When I have a rational basis to believe that all of the sudden, I was hit by a psychiatric problem, I’ll be happy to take whatever drugs they want me to be on. But knowing full well that those drugs are over-prescribed and have serious side effects, particularly in those with a history of seizure and blood-pressure issues, both of which I’ve exhibited, I want them to be certain there’s no physical cause for my “mystery illness” that could have been addressed in a less traumatic way.
However, I don’t want to end up dead, or in a psych ward somewhere, because dealing with this became more than I could take. I feel emotionally and physically broken down. I feel scared. And I feel like I want answers, not guesses, not assumptions, and not drug-related Russian Roulette. I just want good, old-fashioned, scientifically-based explanations for what’s going on with me, and I’ll be happy to take whatever cure is associated with that (so long as it’s not one that’s worse than the illness itself.)