The single most difficult problem with fibromyalgia or any chronic pain condition, other than the relentless pain  itself, is figuring out when to seek help for that pain or any discomfort or unusual sensations your body may be offering. I have a general rule – don’t go to the ER unless I’m unconscious or hemorrhaging. I’m actually more reasonable than that, but it’s close. Another rule, don’t go to the doctor unless something has persisted at least a couple weeks and/or it’s interfering with work. So many times, I’ve waited and waited and put up with problems, only to go to the doctor, have them find nothing, and then the pains resolve all by themselves. Money and time wasted. At least, however, I know when I feel a certain set of pains that I can wait. That’s the pain that was thoroughly checked out and it was nothing. It will go away. the problem is that being really unable to seek help when I feel like I might need it causes some serious anxiety. After all, in 2002 I had a massive pulmonary embolism that came very near to killing me. I had waited months before getting help.

Funny thing is the anxiety comes more in NOT finding something than thinking the doctor MIGHT find something. I’ve said more than once in all seriousness, I’d prefer the doctor find SOMETHING, a tumor, anything that they have a shot at fixing, rather than find nothing and give me the “we don’t know what it is you’re feeling and we can’t do anything for you; we understand how difficult it is [no you don’t] but it’s not x, y, z and you’re on your own” talk. I love doctors, I really do. I find 99% of them wonderful human beings – incredibly healthy human beings – who really do want to help. I’m a source of frustration, but I’ve only had one or two just shut down on me when they figure out they can’t figure me out. Maybe my anxiety comes in the possibility of seeing that shut down. After all, in 2002 shortly before I woke up on my bathroom floor with a massive pulmonary embolism, a doctor shut down when he saw the fibro diagnosis in my chart and sent me home without taking me seriously when I said something was wrong. I saw it in his eyes.

So this weekend I spent the days trying to find the hair that was hanging in front of my left eye. I have short hair. My bangs don’t hang in my eyes. Maybe it was an eyelash. Nope. So yesterday morning sitting in my office trying to push the non-existent hair out of my eye, I struggled with the question. To call or not to call. I wasn’t horribly uncomfortable. I just knew something was wrong. I called, and the ophthalmologist’s office said they’ll triage my question and they’d get back to me. I hung up and went on with my normal day, expecting not much. About 15 minutes later, “Can you come in right now?” Huh, sure.

Five hours of testing and imaging later, of course there was no detached retina. But there is a spot, an odd spot called a cotton wool spot. It’s somewhere in my eye, looks like a bit of cotton fluff, right near my optic nerve. It’s not that big of a deal, but it is usually an indication of a more severe underlying condition, such as diabetes or high blood pressure. I have neither. My BP was 138/89 yesterday even after bright flashing lights in dilated eyes. Plus, the imaging of my left is a little blotchy or patchy compared to my right eye, a condition (I can’t remember what the doctor called it) which could indicate that my eye isn’t getting proper nutrition or blood flow. That, he said, could be more serious. Not enough nutrition or blood flow could lead to blindness.  So he went to discuss with a specialist who wasn’t quite as concerned as he was, but they decided to run blood tests to be sure of what was going on.

My surprise at the doctors actually finding something melted away into that familiar resignation. Blood tests. There’s never anything wrong with my blood. They’re going to find nothing and then say, well the cotton wool spot will resolve eventually; we’ll keep an eye on it. Indeed my CBC panel came back perfectly normal. My inflammation marker is up, but that doesn’t surprise me or my stiff and swollen joints. There are more results to come, but I’m not holding my breath. The doctor will call when they all come in and say, er uh, well there’s nothing significant in your blood work. So we’ll just observe. Call us if you notice any changes. And then I’ll notice a change and I’ll sit there thinking, is this a change? should I call? will I just be wasting more time and money? It’s like a merry-go-round of indecision.

For the past 10 years or so, I’ve been working through depression. Counseling, cognitive behavioral therapy, antidepressants. My counselor, a wonderful person who will be retiring in October, has pulled me through some massive issues; I’ve learned to make use of the cognitive behavioral tools so I no longer feel the need to never express anger or to shut myself up physically and emotionally; and after several attempts at antidepressant therapy, I’ve gotten on a very low dose of Prozac which I’ll be on probably for the rest of my life. How do I know the Prozac works? I went off it when I felt too normal to be on an antidepressant. It took months to regain balance. When I’m not on that very low, maintenance dose of Prozac, I feel a vortex nip at my toes trying to pull me down into a whirling pit of inhumanity. That’s a bit dramatic, but anyone who is destined for lifelong Prozac or Zoloft or whatever understands that ever lurking threat of loss of balance. I picture the vortex in my head when it threatens me. I imagine myself in an empty room, an infinite room – the walls may be white, but they’re so vast I don’t feel them. But in the corner of that infinite room on the floor is a small, ever moving, ever changing whirling inverted vortex. It’s sneaky. It can reach out and try to pull me in. It can lurk trying to trip me up or let me fall in. I have to constantly be vigilant so it doesn’t trick me into oblivion. More drama.

The past couple of years has been both bad and good. I’ve been maintaining, working at being the person I want to be. At the same time, however, I have not been taking care of myself the way I should be taking care of myself. I’ve been living in my parent’s basement while we work at putting in a new house. It’s not easy living in my parent’s basement. I haven’t taken the time to write or even read the pile of books waiting for me because I feel so temporary, in the air, displaced. My space is not my own, and I never knew how important having my own space was until now. I’ve been locked into waiting mode. In the meantime, I’ve worked to keep my relationship with my husband alive, to keep a relationship with my parents so I still have parents when we finally leave; I’ve worked at everyone except myself. I’ve gained weight (a lot), and I have not been exercising. Every year pain and mobility becomes more of an issue. The pain increases and the mobility decreases. That’s been an exponential crisis this last year and a half in my parent’s basement.

This week the house is starting to get built. It’s a modular, so the house itself is in a factory somewhere getting built, but we have excavation and dirt and next week we’ll have cement. We’ve waited so long for this.

Perhaps being inspired by our new dirt, I’ve gotten back in the pool. This time, I’m taking a class once a week called Aqua Mixx, which is a combination of core exercises, aerobic exercises, and “weights” in the pool. I like it. I’m also getting in the pool once a week and running. That’s been interesting – difficult. When I get out of the pool after running for a half hour or 45 minutes, I can barely walk. It helps to get in the whirlpool afterwards. I’m sore the next day, but pleasantly so. I’m going to try this combination through the end of the year at least, twice a week. Staying to exercise after a 10-hr work day makes for very long days, and adding the drive-time and my current levels of fatigue, “difficult” is an understatement. But it makes me feel good to be doing something again. Good enough that I could open up my little laptop and write this.

New house, new goals, new hope. I still have to be patient, but more importantly, I have to be more mindful of my own needs, physical, emotional, mental. I can do this.