I just took a count and so far this year….
- I have had 20 doctor’s appointments which I marked in my calender (and probably a few I didn’t mark)
- I have seen seven different specialists
- I have had an MRI, an ultrasound, a cyst exploded from inside my hand and another round of nerve-blocking injections
I did not want to try and count how many times I’ve had blood drawn, nor how many prescriptions I’ve gotten, but in sheer amount of copays alone, I have spent at least $200 so far this year on doctor’s visits. And we’re only into the middle of May. No wonder I feel like I divide all my time between work and the doctor’s office.
I saw another one of those seven specialists today, this time the rheumatologist. I liked him a lot, he was quiet and calm and treated me like a person instead of another patient to shove out the door as quickly as possible. The idea behind me seeing him was to see if a) he suspected any kind fibomyalgia instead of chronic fatigue b) to see if he had any insights into treating whichever of those he believes I have, and c) get his thoughts about my muscle, joint and tendon pain.
He does not believe I have fibromyalgia, and he thinks that my chronic pain and fatigue are most likely linked. He explained it in a great analogy; when you sleep, the first couple levels of sleep (including the one you dream in) are not the really restful parts. You have to go through those levels to get to the deepest two, where your body heals and repairs itself. Chronic pain disrupts your sleep and often keeps you from reaching those deeper levels. If your body was a city, those lower two levels are the ones where the cleaners and street sweepers and various workers all come out, clean things up and make it shiny and pretty for the next day. If you don’t get enough time in those levels, your body doesn’t have a chance to repair itself. Then you wake up feeling more tired than when you went to bed, your brain is more sensitive and on edge, any pain you feel is amplified that much more, and the cycle repeats endlessly. That certainly sounds reasonable to me.
But of course, the real question is what to do about it. The rheumatologist encouraged me to continue seeing my pain specialists, as that may be the best way to take care of the pain which may be causing the fatigue. And he wants me to go in for a sleep study, which sounds completely dreadful to me, but I’ll make myself do it. I already know I sleep terribly; it seems stupid to have a purposely truly awful night’s sleep just for the sake of evidence of what I already know… but doctors do like proof, so I’ll do it. But I won’t like it.
The rheumatologist also took a few minutes to essentially give me a pep talk about chronic fatigue and remind me that while many people are skeptical about it’s validity as an actual condition, it is a real condition with real effects on the people who have it. There is, of course, no nice, simple easy blood test to immediately prove a person has it or not, but that doesn’t mean it isn’t real. As he pointed out, there is no blood test for migraines, but they also exist. One of the most insidious aspects of chronic fatigue is it’s lack of visual proof to others. I may feel awful every single day, but still look “normal.” There is so much misunderstanding about the condition and people with it are often seen as being over dramatic and lazy and they just need to walk it off and they’ll be fine. Nothing could be less true. And I really appreciated my doctor taking the time to reassure me on the subject, even without me bringing it up.
Today’s photo is one of my current favorite ones for a lot of reasons. I began planning it at a time when I was worrying about my poor health, and fretting that it would lead to an early death for me, leaving Geoff to face old age alone. Now really, there’s no reason to believe that I absolutely will die early; I may just as easily live a tediously long life. But I was worrying about leaving Geoff alone, so I channeled those feelings into my photo.
As Frail As A Bird
I also wanted to mention that my online photography class Introspective is going very well and I’m really proud of the photos my students are turning out! I’m planning on holding it again in a few months, so message me if you’d like to be included!
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