Showing posts with label fatigue. Show all posts
Showing posts with label fatigue. Show all posts

Saturday, May 1, 2010

Eyes Wide Shut

I went to an all-girl, Catholic high school with only 44 students in my graduating class. Among other essential courses in English, math and science, every student had to take a typing class as part of the required curriculum. This, at the time, created a bit of a stir among some of us independent, strong-minded young women. I mean, really. Typing?? Did they think we were all destined to become secretaries?

But, of course, our protests fell on deaf ears. The powers-that-be continued to insist that we all sit in front of our (now extinct) electronic typewriters, dutifully typing "asdf jkl; " over and over again as we (or at least, I) rolled our eyes to the ceiling at the utter silliness of it all.

It's a funny thing, though, because that typing class turned out to be much more useful to me in my life than the more impressive courses like chemistry or physics. In fact, it may have been the single most useful class I ever took.

Here's why: something I have yet to mention on my blog is that I type with my eyes closed. Without looking at the screen (since my eyes are shut and all), I type out everything I want to say, then open my eyes to go back and look for typos. Fortunately, the plethora of said typos are usually highlighted in red, so I can spot them with greater ease. I fix a few, then rest, then go back to fix a few more, then rest, and so on.

Photo from Getty Images

Once the typo's are fixed and there are no more bright red lines to mock my typing skills, I am then able to listen to what I wrote and make corrections as necessary.

I listen to what I wrote because I can't read what I wrote. Due to neurological problems that effect both my vision and cognition, I have been unable to read more than a few sentences per day for many years. Doing so causes a setback (or crash) that can take weeks, or even months or years to dig out of, depending on how far I push it.

Fortunately, as this issue got to be a bigger and bigger problem for me, threatening my ability to even send or read email, my fiance began to search for free text-to-speech programs online. We found one that worked for me, and I have been using it for many years now. The speaker program not only reads back my own writings, but it also reads all of my emails, forum messages, comments, blogs, Facebook postings, and websites I visit. Essentially, I use the program to read everything.

I don't mention this to people often, as they tend to find it odd for some reason. I think some are taken aback that something with such a silly name as chronic fatigue syndrome could cause significant neurological problems and actually rob you of such everyday things as the ability to read or watch t.v. I also think others are weirded out by the computerized voice itself because it sounds so.. well, computerized. "Can you even understand what it's saying?" someone once asked me when they overheard my computer chattering away at me. I admit it takes some getting used to, but I've learned to adjust. In fact, I now welcome the voice, as to me it has become the sound of a familiar friend of sorts, one without whom I'd be lost.

I wanted to share this aspect of my disability because I know I am not the only one who faces this challenge. My fiance actually uses the program as well because he has the same kind of struggle. Many people with ME/CFS tend to find it more and more difficult to read, either due to the vision problems that often accompany this illness, the cognitive disturbances, the incapacitating fatigue or all of the above. And while for some this may be a mere, mild frustration (depending on severity), for others, it can mean a complete disconnect with the outside world. Compound this further with the difficulty of speech and interaction that some (like myself) also experience with this illness, and all means of communication are threatened to be lost.

So, in the event this program may be useful to some of you or someone you know, I thought I'd share it with everyone today. There are many different programs available; some are free and some must be purchased. The one I use is called Deskbot, which can be found at http://bellcraft.com/deskbot/. It's not particularly advanced, but it has worked well for me. Please make sure you are visiting the company's direct website, however, as some downloads for this program come from questionable sites and may contain viruses. Always make sure your anti-virus software is up to date before beginning any download.

Another program is called The Natural Reader and can be found at: http://www.naturalreaders.com/

This reader is actually a bit more sophisticated than my own, and when I'm up to giving it a try, I may make the switch.

Anyway, there have been a lot of other things I've also been hoping to write about these last many weeks but, regretfully, I have simply been too ill. I've recently suffered yet another significant crash, along with the myriad of tremendous frustrations and disappointments that always accompany a setback. So, for now, I'm continuing to hold out hope, attempting to rest as much as possible and taking things moment by moment.

At this particular moment, I'm off to open my eyes and typo check. Wish me luck. :)

Thursday, February 18, 2010

The F Word

So, I’ve been thinking of the F word lately. Not that F word, but the other one.. the one in the acronym of CFS/CFIDS. That dreaded word fatigue.

In the thick of a long standing crash, it strikes me even more deeply just how grossly inadequate a term it is for what we experience. In Hillary Johnson's Osler's Web, Dr. Mark Loveless was quoted as saying that, at their worst, "the CFIDS patient feels every day significantly the same way an AIDS patient feels two months before death.” If I were to try to capture such a feeling in a word, I’m not sure what I would use, but it wouldn’t be fatigue.

The eloquent Ms. Laura Hillenbrand (author of the best-seller Seabiscuit and long time sufferer of CFS) put it this way: “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization." Indeed.

As I was contemplating this frustrating word one morning, I wanted to attempt to give it a bit more weight and power somehow. In the process, I ended up with the idea for the following... well, poem of sorts. Please bear with me here. I have not written more than a couple poems since I was a child. This is an amateur attempt at best, but I wanted to share it anyway because this word is so often misused in relation to our disease.

F is for fierce, ferocious, feverish fatigue, it's
Flamed fingers folding over you, filling you with its
Feral, filthy fumes until you fall face forward,
Fallowed from its forbidding force. Your
Former self, physically now so fragile and frail,
Falters and fumbles, yet…
Fervently forges
Forward
Fighting for a
Fleeting flicker of freedom.
F is for the felicity of fabulous fantasies that
Float effortlessly in the fluidity of dreams,
Fearlessly and faithfully flourishing in flight,
Foretelling a
Future
Fully
Fortified
Functional
Fruitful
Full-bodied
and
Finally
Fervently
Free…

--LB © 2009


See how the poem is in... the shape.. of an F? And I used mostly all F words? Hello? Anyone? ;) Okay, a bit forced, but I tried. :)

Thanks to all those who left such wonderful comments of support and encouragement to me with my last post. It was so appreciated. Regretfully, my crash continues and has not yet fully abated. It's been a very rough few months, to say the least. I'm a bit concerned this may be my new CFS "normal," but I'm trying to remain as patient as possible, and as always, I continue to hope.