Living life with multiple chronic illnesses…. and some other stuff!

Monthly Archives: February 2010

There is a serious disconnect between thoughts and knowing how to turn them into real words….  ARGH.  Is there such a thing as being TOO much a visual person?

~Although, I'm sure that fatigue and pain doesn't quite help the situation.

Fatigue is something a lot of people experience from time to time and, unfortunately, what many people with chronic illnesses deal with every day.  I’m not talking about what most people seem to think what fatigue is – really tired.  I am talking about true fatigue.  A full body, mental, physical fatigue.  The fatigue where a person can’t think straight, get out of bed, or even watch TV.

When most people experience fatigue it is usually alleviated by rest.  For example, a soccer tournament where the players engage in multiple games a day.  Of course they are going to be exhausted and experience muscle fatigue.  Same thing with an office worker spending hours on paperwork, that person will probably feel a lot of mental fatigue when the day is over.  With these people, a hot shower or bath and a good night’s sleep is all it takes to recover from such types of fatigue.

The kind of fatigue I experience is the kind where a night’s rest isn’t effective.  In fact, no matter how much I try to rest, or how many vitamins I take, there is no relief from the fatigue.  Don’t get me wrong, I do have some good days, but right now I want to talk about the fatigue I am experience now.

Right now I am lying in bed with two pillows under my knees, a heating pad on my lower back, a “boyfriend” pillow, soft wedge pillow, a blanket and two afghans, and Shadow.  I am completely and utterly exhausted.  My legs and arms feels like sandbags, I can barely hold my head up (hence, the pillows), and formulating complete declarative statements is some what a challenge.  My intentions are not to whine or complain, these are facts.  My facts.  This is one aspect of my life.

There also seems to be a compounding of fatigue.  As someone with Ehlers – Danlos Syndrome, it takes a lot of effort to do as simple a task as brushing my hair.  It takes my my brain, nerves, neurons, and muscles to work much, much harder to do things that well people don’t think twice about.  A trip to the bathroom, which is just a few feet from my bedroom can tire me out and cause me to be winded.  Because of this extra work my body has to continually do, there leaves little room for any kind of restorative rest.  In many ways it seems to have an exponential effect.  It will take me days to a week to recover from one night out to dinner from friends, or an afternoon shopping trip.

Last night was the start of the Olympics 2010 which means that it was also the start of the Ravelympics 2010.  I am supposed to be participating but so far I haven’t been able to pick up my knitting needles, spindle, or beads.  I’ve been too fatigued to do much of anything, even be on the computer for extended period of time.

Those of you that experience my level of fatigue, what helps you best to recover from intense periods of fatigue?  What are some of your favorite things to do?

So, when I got my adorable little netbook, I was thrilled! It was light and very portable, something I was looking for.  The keyboard was smaller to fit my hands.  I was using my iMac for all the graphic design/web design stuff I was working on.  So really, it was perfect.  However, I did not plan on my eyes getting worse, or the dryness (which great affects one’s eyesight) to be worse.  I also didn’t plan on my conditions progressing to the point where I can’t sit up at a desktop computer very much anymore.  Even though I have this cute, little, light, portable netbook, I have to squint in order to see what I am typing.  I do have the option to increase my font-size.  doesn’t quite work when it comes to images, or editing, or researching patterns.  Neil and I were planning on getting me a new laptop, nothing too huge or special just something that I could actually use to do “work.”  We were planning to get one after Neil’s tax returns came back.  Well, he’s getting back a THIRD of what we were expecting due to some stupid new tax law.

Yes, I bummed about the computer, but it’s a huge reminder of how things are in general.  We keep getting shit on time and time again.  Neil was supposed to get full-time by now, obviously didn’t happen.  I wasn’t expecting my health to decline as much as it has.  I’ve missed PT about 3 weeks straight now, and next time I go back I’m going to need her to work on my neck again.   Things need to change…  but how?

This is a video about Sensory Processing Disorder, where the brain processes extrasensory stimuli (noises, lights, etc) as harmful inducine a “fight or flight” response.  In this video you will hear about a few girls’ experiences.  SPD is something I deal with everyday.  It can be debilitating and significantly affects one’s life.  SPD is very common in Autism Spectrum Disorder, though, SPD can occur all on its own.  Please take time to watch this video. Thanks.