My mind is a slippery slope. It has always been this way. The more emotional my memory, the slippier it is. Growing up in a dysfunctional family where emotions ran high and negative feelings were the norm has had a serious impact on my ability to remember just how bad things were back then. My brain has done a wonderfully effective job of blocking the negativity. I know things were bad; I know things weren’t right. But I’ll be damned if I know who, what, where, and why. I grasp onto to the stories family members have told me like a drowning women hangs onto a life preserver. I cling to the memories others have because without them I am at a loss. My childhood resembles the Dark Ages of Europe – empty space where we know life was lived but not how. On the one hand, I am blessed to only remember the happy times growing up. However, I can feel those empty spaces sucking away at me like a black hole. Just because I cannot remember first hand what happened doesn’t make the damage any less severe. I live with the repercussions of events I can’t remember. Is this healthier for me? Is it best to keep those things buried in my subconscious? Every time I try to pull those fragments of my childhood to the surface, my mental state suffers. My hold on sanity quivers until it threatens to snap. My new family, the one I married into, does not like it when this happens. And who can blame them? It is not a fun experience to watch a loved one grapple with deep-seeded pain, with their always fragile hold on normalcy.
On the flip side, my brain has compensated for this memory loss by sharpening my capacity to remember the non-emotional side of life – a.k.a., data. Raw data gleamed from books and lectures and seminars. It made school easier for me since I had all that extra space in my consciousness. I excelled at the acquisition of data. It was my thing. It made research (a passionate hobby of mine) that much easier to pursue. But now that chapter of my life is over. My illnesses have stolen yet another piece of my life from me. My memory has disintegrated before my very eyes. Brain fog (yes, it is a real, biological event) has stolen my ability to move data with ease from short-term storage to long-term storage. My ability to retrieve data from long-term storage has failed me too. It makes remembering appointments and to do’s difficult. If I don’t leave written reminders around me everywhere, I lose track of them. They slip into the gaping holes that exist in my brain. And just forget about my formerly large vocabulary and eerily precise ability to spell the most difficult of words. Those are climbing out the window one megabyte at a time. That tip-of-the-tongue feeling we all get occasionally is a daily experience for me. I know I know something, yet I can’t recall it. It isn’t dementia; it is the tortuous reality of brain fog.
Today’s rant was inspired by a missed lunch date an hour’s drive away from home with a sister I only see once per year because she lives in the south and I live in the north. It was a lunch date with my Babcie (grandmother in Polish) to celebrate her 95th birthday. I really don’t think normal people forget important dates like this one. It is no wonder that I feel like I am losing my mind…
What makes something real? I really want to know (no pun intended). I recently got into an argument about what makes an illness a real illness. So many illnesses start off as being attributed to stress – e.g. lupus, multiple sclerosis, arthritis, ulcers, migraines. If an ailment is not properly understood, it seems to be brushed aside as yet another consequence of stress. Patients are told to buck up and get over it; think positively and carry on. Just because medical technology has not gotten to the point where it can detect an illness does not make it psychosomatic, a figment of their hypochondriac imagination, or (my favorite) depression. Nowadays it is accepted that MS is a real disease. We would never dream of telling a MS patient that they would feel better if they just got out more, or exercised more, or thought more positively. We wouldn’t call someone in the midst of a migraine lazy for needing to lie down in a quiet, dark room to rest. Fibromyalgia and chronic fatigue syndrome both have a large body of scientific, peer-reviewed research behind it. So why do people, including doctors, continue to still insist they are not real? Just because there is not single test to detect either disease, just because there isn’t a cure doesn’t mean these are not real diseases.
The person I was arguing with pointed out that you can find a study to prove anything, that often current research will negate research that is 10 or 20+ years old. That is true to a certain degree. There is a lot of flawed research out there. This is why research is not acceptable until it has been peer-reviewed and replicated. The scientific method states that in order for an observation to be valid, it must be replicable. Also, people will erroneously believe that an earlier study has been disproved (I am talking about medications and supplements here) when abuse of said substance results in different results. Of course the end result with be different if abuse occurs. Duh! Case in point: way back in the 1990s, creatine was considered a wonderful supplement for bodybuilders to take. Now the media treats it like a pariah. Why? Because a bunch of baseball players, among others, abused it to get astronomical results. That doesn’t mean it is a bad supplement to take. Taken in moderation or when a person has a deficiency in it can have wonderful results. Bottom line is when research is peer-reviewed and replicable, it can be trusted as fact. If we doubt ALL research, science will come to a standstill.
The Fates are some twisted sisters. They must have sat around one day dreaming up the most messed up combinations of illnesses. They were really having fun when when they planned out my future. They must have gotten such a kick out of giving me polar opposites for chronic illnesses to bear – yes, the pun was intended. “Hey, Clotho! Wouldn’t it be hilarious to give someone a disease where they have to pace their physical activity and require good sleep habits, and combine it with another disease where they have way too much energy, can’t sit still and don’t need sleep?” Well, sister, welcome to my world! That is what you get when you have bipolar disorder and fibromyalgia. On days when the mania starts acting out of control, I can count on the fibromyalgia flaring up like a bad dream that just won’t go away. I mean, what the Hell! The cruel irony of having days when I feel on top of the world, like I can do everything I ever dreamed of doing, when I feel so vitalized and super human. Oh, those days are like liquid gold, like I have found the Fountain of Youth and it is calling for me to drink deeply… But then fibromyalgia rears its ugly, painful head. My body contorts in pain. My muscles spasm in agony. My joints ache like a son of a bitch. And the lack of sleep turns my brain to mush, fogging up my once brilliant mind. It can take days, months to recover from a glorious manic high. The consequences of not taking my medications or simply slipping on a banana peel of Fate. Whatever the cause, the damage is always the same.
The way I see it, I must have really pissed off someone in a past life to deserve the perverse hand of cards I was dealt. What could I have done? Maybe I offed Kennedy or Lincoln. I could have been Jack the Ripper or Typhoid Mary. Whatever it was, it was bad. I can’t believe life would be so cruel to send me these two chronic illnesses (not to mention the other health problems I have had or have) without there being a cause. I refuse to believe that I simply pulled the short stick in life. Pessimistic, I know. Instead of seeing the glass half full, I have always wondered who the Fuck drank my water? But I know how unproductive this thinking can be (cause lets face it, after the mania comes the depression). I know I need to force myself to think differently about my life. Therefore, I should focus on what my illnesses have taught me. Or maybe I should focus on the difference I can make for others because of my illnesses. I know at some point all this will make sense, there will be a moral to the story of my life. It may be something as simple as treat your body with respect when you are young so you reap the positive rewards later in life. I am just hoping it is not something sadistic like we all live a miserable life before we die.
On that cheerful note, have a great week! 😉
The most disturbing part of having a chronic illness is find a doctor to oversee my treatments. Having more than one chronic illness simply increases that search exponentially. If you have bipolar, your get sent to a psychiatrist. However, psychiatrists are trained by pharmaceutical reps (and let’s face it – Big Pharm is the real driver of healthcare these days) to throw medications at their patients. They don’t have time for “talk therapy” or cognitive-behavioral therapy. They no longer seem to connect with those professionals who do. Don’t bother asking for a recommendation to a good therapist. The disconnect is an ever-widening chasm that few patients have the stamina to bridge. We are left to randomly calling therapists out of a phone book or, more likely, from the list our insurance companies offer up. We all know how well that works out, right?
If you complain to your family doc about migraines, they send you to a neurologist. But did you know that migraines comprise a small fraction of what most neurologist know? Most docs don’t even know that there are headache clinics out there that only deal with migraines and headaches. What a shock! How is a family doc supposed to manage our care if they don’t even know what specialties exist in the world of medicine? What are they actually learning in medical schools these days?
Now if you are lucky enough to have fibromyalgia (I know you can’t actually hear the sarcasm behind the word “lucky” in print), the knee-jerk response from most family docs is to send you to a rheumatologist. But wait! Did anyone ever ask the rheumatologists out there if they want to treat fibromyalgia? They only got stuck with it based on an outdated, obsolete definition of an illness that research has redefined into central nervous system disorder. WTF!!!
The bottom line is that family docs are poorly trained to refer patients with chronic illnesses. They pass their patients on to others hoping they don’t come back. Specialists, like most docs, are trained to run tests until something comes back positive for a disease. Then they cut something out or medicate the problem away. They want to cure their patients, not have a long-term relationship with them. And who can blame them? Modern medicine works best for those illnesses that can be cured. It is ever so disheartening to see the same patient over and over again without making their problem go away.
Chronic illnesses are the ugly step-child of the medical community. They require a lot of patience from both doctors and patients (no pun intended). Most illnesses that fall into this category are treated like that Whack-a-Mole game we all played as kids. Every time a new symptom pops its ugly head, the doc whacks it away with medications, physical therapy, or even some Eastern approaches that have slowly crept into our Western medicine. Is it any surprise that the patients keep coming back?
In the perfect world, there would be a cure for every illness. But since that utopia is out of reach, the medical profession should be more open to managing our chronic illnesses.