Cognitive Fog and another Disappointment.

When I first became ill with mono, that very first first week, I felt like my brain was swollen. It wasn't a headache, it was simply overwhelming pressure.  The sensation was potent and constant.  I also had what is commonly known as brain fog.  I used to describe it like having cellophane wrapped around my brain. I could think, but I had to think through this layer of pressure and filminess.  My thoughts took longer to form, words were difficult to find, information took longer to process.

Interestingly, I see my father who has mild cognitive impairment struggling with these same things.

While at first these cognitive issues were ever present, slowly over time I had periods where they waned.  After a few years, these periods of relief lasted longer, and eventually my cognitive issues became infrequent.  How else could I have pursued a masters and then a PhD mostly from bed?

Now, I only have problems if I drive, or am crashed.  However, right now I am having problems, real problems.  I think it's because I work my brain hard for hours everyday.  I read, write, process, teach, assess.  The last few days it's not that I can't think, but it's taking so much time to process, to find a word, to write a paragraph.  If I push through I even start to get spotty vision (like right now).  I need to rest my brain...I have three weeks to go, I hope I can manage to facilitate the rest of this course well.

As to the disappointment the community (M.E.) faces this week, and that I mention in the post title - the phase three Rituximab (drug) trial from Norway is negative.  That the drug made it to phase three was both hopeful and validating for many of us.  Unfortunately, once again, we are left without even the promise of treatment in the far flung future (finding and testing a drug takes mass amounts of funding, which M.E. doesn't get, and then years and years to go through trials once a candidate is identified).

If Rituximab had proved effective not only would there be an option for treatment (someday), but it would have highlighted possible specific mechanisms and pathways of the disease and validated it's biologic immune dysfunction within the medical community.

Anyways, given how hard it is to write, that's all I got today.  Sorry about my absence lately, part time work is all I can manage. Overall my health has remained pretty steady (outside the brain fog) which is something to be thankful for.  I hope you are all AWAP.