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.

Watch Unrest.

My life is busy.  Too busy.

Lately, I often feel overwhelmed. I'm happy for my work (the online course), I'm happy that I have my father in my life, but I'm also sick with a disabling chronic illness. I wish there was a happy medium.

I'm doing too much to the point where I collapse in mental and physical fatigue almost daily. (That said, I haven't relapsed). But given how much I've stressed and stretched myself this past 12 months, I decided not to take on any work this winter, so there is a light at the end of the tunnel. I just need to power-through and try to enjoy the next 6 weeks of 'busy' as best I can.

Then it's back to more rest/time but also the accompanying poverty that goes with it, not to mention the issues with low self esteem that plague me when I'm not working.

But I'll get to the point. I'm writing this post for a reason. I watched the documentary UNREST.  If you haven't watched it, watch it.

If you are a non M.E. friend, I think you will see pieces of my story in there.  The time early on where I was so sick, dizzy, weak and exhausted you watched me lay down in a dog bed at our friend's party.  The time you had to help me walk because my legs gave out after I thought I was well enough to go for a walk/hike.  The times early on where I had to crawl to the bathroom (although I don't think anyone saw me those times), or where I couldn't make it up a set of stairs.

The movie's not completely overwhelming, I thought it would be; it wasn't.  It's about M.E. but it's also art. It's a story that needs to be told and it's told well. There are small moments of beauty in it.  There are even a few moments of humour.

On the other hand, it's not a "light" watch.  It's about the lives of people who suffer severe illness and yet have been mostly dismissed by doctors and society. I cried.

I felt jealous at times of the support Brea obviously has (both personal and medical). But then I guess she wouldn't have been able to make the movie had she not had this support.

I'm going to buy a bunch of DVDs and give them to friends...  It's such an important story and it's done so well.

Have you seen it? What did you think?