It is a terrible self-perpetuating symptom, one I’ve seen first-hand in both my own and Dear Hubby’s families.
If you are lucidly aware of your disease, the knowledge makes you vigilant, questioning your perceptions, seeking clues to confirm what aren’t sure of. It leaves you exhausted and uncertain.
If the disease is dominant, the confusion makes you vigilant, questioning your (and others’) perceptions, seeking clues to confirm what you aren’t sure of. It leaves you exhausted and uncertain.
I learned this interesting fact some years ago from an essay by Sir Robin Murray in a wonderful book called What Scientists Think, an enlightening and accessible collection of writing about a range of topics. These voice hallucinations were likened to basic thoughts that somehow had become externalized. Looking at it this way, in turn, offered an approach for cognitive therapy that showed promise with some patients: over time they learned to re-recognize their thoughts as just that. This is no small feat, teasing apart the confusing confluence of (mis)perceptions of actual things from hallucinations of non-actual things. It would be like rewiring your own brain!
And still you’d remain vigilant. Because how could you not, living with and in a body that conspires against you physically and mentally, one that is unreliable, unpredictable, and, let’s face it, untrustworthy?
It might even make you feel Anxious.Before you know it, your doctor wants to add a new medication. One that will help your “mood”.
Schizophrenia is one of many traitorous, diseases and disorders, keeping company with Muscular Dystrophy, Multiple Sclerosis, Parkinson’s, ALS, Lyme, and indeed most autoimmune inflammatory diseases.
You are Schroedinger's cat, and every day, every moment is like reopening the box, not knowing how able your body will be. Perfect conditions for Anxiety, and it's close cousin Depression, even among the most stouthearted.
Anxiety isn’t new in my life. Quite the opposite: is it structural, foundational, with turns towards depression and a dark affinity for nothingness since grade school. It is so obvious to me now, as I’m sure it is to anyone who knew me then. it was a generalized anxiety, always there in the background, and mostly not interfering. The only thing that saved me was my body, even as puberty kicked in. I remember the self-consciousness that went along with developing breasts when a single digit was still enough to mark my years. Some of my friends were the same, with bra strap lines on our backs. When boys started noticing it was uncomfortable; but I didn't feel anxious about it.
Within a year of getting my first period, (a few months before I turned 11), I was experiencing severe cramps and heavy bleeding and feeling like I had the flu for a few days. It was inconvenient among other things. It caused pain and literal disruption at times (aka nausea) severe enough that I’d miss school. But not anxiety about my body. I was female, I’d be been given “the talk”. This was life.Through all this time I was swimming competitively. I was good at it, and I liked both the work and the winning. No surprise, it made me feel good about myself. And, also, it didn’t hurt to swim. Yet.
So, I figured out tampons, and occasionally asked for Tylenol, because staying still wasn’t an option.
Anxiety? Yes. In talking about it, when I actually needed tampons and tylenol. Otherwise it was just keep going.
Early in life I learned the blessing of physical activity as a balm against many kinds of discomfort. I was an active kid and I’ve had lots of joint injuries, repeatedly in a few cases. I figure in the 6 years spanning 10 to 15 years old, I spent more than a year of my life on crutches just for my left knee. I was such a regular at the physio department up at the hospital during this time that eventually we just didn’t bring the crutches back. I injured myself, rehabbed and got busy again. Athletics, sports, being active - all of it - gave me focus. A physical outlet. A place (the gym, the pool, the field) and persona (skilled, part of something bigger, valued) that made sense to me, when pretty much nothing else did.
No anxiety about my body, though. I was young, an athlete, and believed the words of doctors and physiotherapists and coaches who told me I could get better, and that it was worth it.
And it was. I learned, very early in life, the joys of physical activity and exercise, of making my body work hard and try new skills and sports.I realized why, one day while leading aquafit at the Oliver Community Pool, when out of the blue I said:
Ladies! You owe it to yourself to stay strong and flexible your whole life! You never know when you might need to squat to pee.It got laughs. Because it’s true.
Living that lesson might be the only thing that saves me amidst the may myriad ways my mind and body so effectively betray me these days, enough at times to leave me regretting the weakness of my younger self.
Physical pain is one thing, and familiar, bookending most of my days for decades. I remember my GP doc frowning at me when I commented about it being a rude reminder that I am alive even before I am fully awake. In a weird symmetry, pain would - and still does - drive me from bed in the morning, and by the end of the day lying down again was, and is, the only way to find a few hours of respite.
That hasn’t changed, although the magnitude, and type, and locations, of the pain is vastly amplified. I never used to cry because of it. And it can be confusing, as new pain points and symptoms have emerged since I’ve started treatment or I get a cold, and everything feels worse again.
And a bit crazy making, because I'd report these things to the rheum doc and they seem to just go into a black hole. I’m left wondering if my feeling worse is significant or not, in light of current medical belief that bloodwork and a temperature of 38 are the indicators of infection.
And exhausting, with bouts of heavy fatigue the result of concentrating intensely against the pain to get something, anything, accomplished. But pain is familiar and kinda sorta manageable, if only by screaming into the wind.
Not so much the intermittent sense of motion as I process both extra and absent sounds while wondering if I’m seeing a cloud of midges 6 inches from my face (in December) or am suddenly living inside a disco ball. These auditory, vestibular and visual disturbances range from mildly annoying to distracting to potentially dangerous, since my balance, even my ability to walk in a straight line, is also affected. But not all the time.
I’m often questioning my perceptions. I don’t quite trust myself. I don’t trust my body. I don’t feel like I know it, or even that it belongs to me at times. How else did it take me so long to realize I shouldn’t be able to see my ribs like that? That I’d dropped 50 pounds, bottoming out at 136! over just a few months. Even when I’d deliberately tried to lose weight I’d get to around 160 through diet and exercise, and that was it. That particular conundrum is still officially unresolved, but my money is on methotrexate induced celiac disease or severe intolerance to gluten. I’ve developed a disordered relationship with food, with things I’ve eaten my whole life now triggering bouts of obvious malabsorption while doctors tell me it is IBS. Or ask me if I’m even eating.
So there’s a whole extra layer to the anxiety now, and the awareness that, with few exceptions, doctors are bad for my health. I’ve seen too many doctors who have failed me, some miserably, a few with outright lies. They demonstrate remarkable ignorance about their own areas of expertise (e.g. that MTX can cause damage to the small intestine https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2773868/I don’t trust them, especially for how they’ve made me not trust myself.
Bless Dr B, though. He was slow to accept that trying to improve my mood in the face of being so unwell was misguided. He really got it when ALL of me felt so obviously better after starting prednisone again. For about 6 weeks I enjoyed a tremendous, and consistent, easing of the inflammation and pain, especially along my spine; then is was less consistent, and less tremendous, but still far better than before starting prednisone. And now I’m tapering, heading right down to zero. I need to, for a number of reasons. And then I’ll likely be back on it before long.
It has been 2 years since I first saw my GP about symptoms that persist to this day, followed by new symptoms, new sites of inflammation and pain, and too often feeling sicker rather than better. Recent test results* make this make sense.
And, more importantly, provide a meaningful place from which to start.
I’m also positive for DQ8, a genetic marker related to celiac disease. Once the hot cross buns hit the stores again I’ll do a gluten challenge and see what happens. I’d like to be wrong on this one, but I don’t think I am.