Saturday, April 3, 2010


I decided to hand that assignment in late after realizing that working hard on it would make worsen the fatigue and tiredness. I also knew that I generally don't do as well (or well at all) on assignments I write when I'm sick. I was planning to get a doctor's note, but then decided to see if disability services at my school, which I am registered with, could give me some sort of note for an extension. Before the semester started, I had only brought documentation on my Dandy Walker Syndrome to register myself with disability services because DWS was the only condition I had that I considered a disability, despite having many other issues.

I felt that the DWS was good enough as a reason to get an extension because of my fatigue and balance issues, but I knew that other conditions I have could be contributing to these symptoms as well. Of course, there are many other symptoms disabling me that DWS doesn't explain. I had a lot of trouble explaining this overlap to the disability consultant, especially when I realized he thought the other conditions I told him about were also related to the DWS. Aaah! It's so hard to figure out what condition is causing whatever symptom(s) I'm experiencing and so I imagine it would be hard to deliver medical proof to instructors or employers about what may explain my absences or make it difficult for me to perform optimally. Also, it could be that a bunch of conditions and factors are working at once to make me feel awful.

Here is some of the overlap:

Fatigue - Post-Viral Syndrome, Dandy Walker Syndrome, Inappropriate Sinus Tachycardia, allergies, asthma (seldom)

Pain in neck, back and legs - flat feet, swollen feet (unknown cause), fused spinal discs/curved spine, Dandy Walker Syndrome, Post-Viral Syndrome

Pain in abdomen - Post-Viral Syndrome, Post-Nasal Drip, constipation from heart medication, or another undiagnosed problem?

Nausea - Inappropriate Sinus Tachycardia and the meds used to treat it, Post-Viral Syndrome, Post Nasal Drip

Drunk/Dazed feeling: lazy eye, Dandy Walker Syndrome (balance), something else?

Because of this overlap, I often don't REALLY know what is making me feel awful, what may have triggered or worsened it or what I can do to improve the symptoms or prevent them. So how do I help myself? How do I ask for help when I don't know what I need help WITH or how I should be accommodated? It's so frustrating! There is even more overlap I'm sure, but I haven't pursued medical investigation or treatment. I'm in a weird place because I want answers about why so many of my pre-existing symptoms got worse with the post-viral syndrome, but I'm not willing to see doctors and get more tests. I'm just so jaded I don't expect anything to show up, even though I feel Post-Viral Syndrome was a hasty diagnosis. These situations explain why I'm pretty sure I will feel even more discouraged:

When I told my gp about my episodes of feet swelling, he said it "doesn't make sense" that the swelling isn't constant. He said it was probably just humidity. He also told me that six-months was too long to have post-viral syndrome (VERY wrong) and that I just needed to start exercising vigorously.

About a year ago, when my cardiologist found that my average heart rate had settled with the medication changes, he said the episodes I described to him were anxiety and depression and to "distract yourself" from the symptoms

Then -- here's a real charmer: my neurologist told me a physical therapist would just ask me, "Why are you here?" because I can walk heel-to-toe -- the extent of his examination, might I add. He didn't take my narrative seriously because "you haven't fallen." Yes, I haven't fallen. Yet.

I don't want to look like a hypochondriac, but I'm PRETTY sure I have significant health problems. At least the number of problems and their chronic, disabling nature is serious, right doctors? It's funny that even with medical proof of my problems, I still have to prove that I'm suffering. Some doctors have just said to me, "I don't know." Others have assumed that because they don't know, it isn't serious or even worthy of investigation.

So yeah... because of these humiliating and frustrating situations (and others), I haven't seen a doctor about my problems in many weeks. Next week I have an appointment with my gp to ask him to fill out the disability form using his own knowledge about my health and medical letters from other doctors. This is scary to me. I'm taking steps to declare my conditions, which until now I only considered a nuisance, disabling. What if my gp and other doctors disagree that I should receive accommodation for my various conditions? What if disclosing all of my problems, symptoms and accommodation recommendations to instructors and colleagues makes them think I'm less capable of doing things, or that I'm lazy and making excuses?

And there there is my Auditory Processing Disorder...

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