I have a little secret I’ve been keeping. I didn’t want to say this out loud until I was certain (and I wanted to wait until I visited with my doctors again, to surprise them a bit), but it appears that I’ve finally found a turning point in my mystery disease. The latest supplement I’ve been taking has changed me for the better, and now I’m no longer in an active crisis. My thoughts are clearer, I don’t always feel “on the edge”, and all of my senses have sharpened.
My primary care doctor (well, nurse practitioner, but I find her to be more competent than most doctors I’ve seen) has listed Chronic Fatigue Syndrome under my official diagnoses. The catch is, that still isn’t a real diagnosis, per se: it’s a catch-all category for “well, we know something’s wrong, but we don’t know what’s causing it, and all we can do is attempt to treat the symptoms.” The cause (and manifestation) appears to be different for everyone who has the condition. I’m under the impression that chronic fatigue is the equivalent of the blue screen you get when your computer fails. The computer itself is functional, and if you can figure out what’s wrong, you can make it work again, but it isn’t going to perform tasks other than simply being on or off until you fix it. It also isn’t dead – it’s just really, really, not functional. Or maybe a better analogy is when you have to operate your computer in safe mode – I’m not sure, I’m not that knowledgeable about computers, I’ve just had to deal with a few uncooperative models in my lifetime.
It wasn’t until my mind cleared up that I began to realize just how hard the ordeal I just survived was. While I was actively in crisis, I couldn’t do things. I mean, my arms and legs worked, but I couldn’t get the motivation to do anything. When I use the term “motivation”, I am not talking about how it feels when you are perfectly healthy, but you just don’t feel like doing anything today – it’s not laziness (although I managed to interpret it as such, and consequently condemn myself). It’s more like a mental paralysis. I could not focus enough to manage simple tasks. I got tired from doing less than even a relatively sedentary person might do. I only did what I considered absolutely necessary – I saw my doctors and forced myself to have a few social interactions so I wouldn’t go crazy. Sleep was not refreshing, so I woke up every day just as tired as when I fell asleep. Think about how you feel when you’ve had a really long, physically or mentally demanding day – that’s the closest I can come to helping someone else understand how I felt. It was just much, much worse than that.
There were other things that made life difficult as well. I was in constant pain, as far as I can tell, because of the degradation of the muscles on the right side of my body. My joints ached, and I couldn’t hold a chiropractic adjustment – it was so awful. The worst, though, was the mornings (and I use this term loosely, because my schedule was highly unpredictable). I had to wake up every day and make the conscious decision not to kill myself. My end was the very first thing I thought of each and every time I woke up. It was like a call of nature, and I had to fight that call every day for more than half a year. This was literally a fight for my life.
I’ll come back to where I am now and what the next step is, but first, I thought I should explain what made me angry enough to write this post. As you might imagine, when the fight for my life became that desperate, I couldn’t do it alone. I started to see a therapist on a fairly frequent basis, as I often as I felt I needed her. In the worst of it, I saw her for three hours a week, which, given the circumstances, doesn’t seem like all that much to me. Every minute of that therapy was necessary to help me deal with the doctors, with my lack of desire to live, with my pain, and with my newly developed feeling that I was completely worthless.
Enter the insurance company. At first, they accepted my therapist’s diagnosis of Post Traumatic Stress Disorder. After awhile, though, it appears the insurance company got tired of paying the claims. They called my therapist and started asking her the details of my case. She didn’t want to disclose more than was necessary (a lot of my doctors have actually expressed the same concern regarding dealing with the insurance companies), but the “bulldog” (as my therapist described the agent from the insurance provider) on the phone pressed for more. The insurance enforcer (a term I’m making up here, I have no idea what her position is actually called) then started asking if my therapist had tried this technique or that technique. Upon my therapist’s admission that, no, she hadn’t forced these things on me, the enforcer (after trying to suggest I had some kind of personality disorder) then said, “Well, it seems like your patient is in control here, not you.” She then informed my therapist that they do not pay for “supportive therapy,” and then asked did I not have friends or a social support network I could turn to?
I have so many problems with this event. First of all, it should be the health care provider in collaboration with the patient, not the insurance company, that decides how a person’s issue should be handled. Secondly, would the insurance company really rather have a client suicide than get “supportive care?” (Don’t answer that question – I already know. Insurance companies are businesses who care more about the bottom line than the patient, and a dead patient is cheaper to treat than one with an illness of unknown duration) Third, what makes them think that my friends have the life experience or philosophical expertise to deal with a crisis of this magnitude? I certainly don’t have those requirements, and I feel I would be failing a friend who came to me for help in a situation like mine. Fourth, I have to ask, what’s wrong with the patient, rather than the provider being in charge of the treatment? Good freaking God, I’ve been mishandled by so many people who were supposed to be looking out for my well-being, so you’d think it was a good thing that I’ve decided to take charge of my own health care. Damn skippy I’m in charge – if I weren’t, no one would touch my case with a ten foot pole. It’s too hard – I don’t fit into a box with a clear protocol for fixing me up.
My therapist is a good woman. She said she kept her cool despite being harassed by the enforcer for a good thirty minutes. She informed the enforcer that I am a very intelligent person, and that I am actively engaged in trying to get a diagnosis for my underlying health condition, the one that made her services necessary. My therapist asked if the enforcer really thought that a person fighting for her life didn’t need therapy. In the end, the insurance company conceded that, yes, I did need therapy, but that my therapist needed to submit a treatment plan, which I suspect is needed so that the insurance company can at some point have justification to deny my claims.
So, as for where I am now:
The “crazy,” as I have named it, is mostly gone. When I stop taking my new supplement too early in the day (I think it might be interfering with my sleep, so I’ve tried taking my last dose earlier in the day, much like you might do with caffeine), the crazy comes back, along with a low-grade fever. I know that my problem is only managed, not cured right now. Also, when the crazy is gone, I feel the physical pain more. While I find the physical pain to be much easier to deal with, eventually it will wear me down and I’ll have to start taking something to treat it. It’s just such a refreshing change (which speaks to the gravity of “the crazy”). I’m going to see my doctors next week and inform them of this change, and see what the next step may be. I’m more than a little excited about this.
I also have just a few hours in a day (and sometimes just one hour) where I feel more normal and functional than I have in the last fifteen years of my life (give or take). I went grocery shopping earlier this week for the first time since I got sick. I don’t mean the kind of grocery shopping in which you pick up only the toilet paper you just ran out of or some readily available snack food (I ate a lot of raw fruits and veggies so I didn’t have to go through the effort of making food), but the kind in which you restock things in your cupboard and think about what you might like to cook later this week. I spent some time in the mall, perusing the book store and window shopping for new clothes (I feel like I want an outfit that makes me look fiercely awesome, to match the way I feel in those few short hours). I picked up new collars for the cats and dropped of Michael’s dry cleaning. I feel like I’m in the world again. It’s great!