Just So You Know blog

access to the internet is often the only contact i have with the outside world.
i surf and blog, email, and SMS friends to feel somewhat normal.

sometimes my attempts to blog about something on my mind simply don't come out on paper the way they sound in my head...
i stumble and struggle to find the right words.
sometimes i wind up way to wordy in an effort to be precise


the same technological evolution that many claim has disconnected us…
reduced us from the personal contact of hand written letters and phone calls to seemingly cold emails and texts, really allows me to reach far more people than i would be able to reach any other way.

the freedom of sending a (still personal) note that can be retrieved by the recipient at their convenience works very well for me. i can no longer write very legibly as my hands don’t respond as i ask them to, and often i am awake at hours of the day that don’t work well for “normal” folks.


the internet also allows for finding and contacting people that i would have great difficulty finding thru other means.
i have several new friends that I have met online due to out shared medical problems
it is both comforting to hear from them and therapeutic to share with them my experiences.
often they are the only ones that truly understand what is happening to me.

the ‘net also helps me keep in contact with old friends.
some have disappeared on me…some have come thru in spades.
so you don’t know what to say. big deal.
avoiding or ignoring me is far more cruel than saying something awkward

a friend who is battling chronic health problems as i am sent this to me and i am sharing it here. i find it to be well written. it communicates well emotions that i and many friends experiencing chronic or terminal conditions experience.


below is the email sent to me,
it is as i received it.

please read. it is very good.
it is accurate. this author hit it right on the head.

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Subject: just so you know....
This was posted from another group I belong to and I would like to share this.

In the spirit of informing those who wish to understand:

These are the things that I'd like you to understand about me.
There is no cure for my situation, even with all of the technology our society has.
They cannot fix me.
It is not because my doctors are cruel or misdiagnosing me.
I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still ME...stuck inside this body.
I still worry about my family, my friends, and I'd still like to hear you talk about yours too.

Please understand the difference between "HAPPY" and "HEALTHY."
When you've got the flu, you probably feel miserable with it, but I’ve been in pain for years.
I can't be miserable all of the time.
In fact, I work hard at not being miserable. So, if you're talking to me and I sound Happy, it means I'm feeling happy in that moment.
It doesn't mean that I am not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. I am merely COPING.
I am sounding HAPPY and trying to be NORMAL.

Please understand that being able to stand for ten minutes doesn’t necessarily mean I can stand for twenty minutes or an hour.
Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today.
With CHRONIC PAIN it gets more confusing everyday.
It can be like a yo-yo.

I never know from day to day, how I am going to feel when I wake up.
In most cases, I never know minute to minute. That is one of the hardest and most frustrating components of CHRONIC PAIN… The same applies to sitting, walking, thinking, concentrating, and “BEING SOCIAL.” Chronic Pain is variable.
It's quite possible that I can drive to the store and do a little shopping one day, while the next day I'll have way too much trouble even getting out of bed.

I may need to cancel a commitment at the last minute. If that happens, please understand that "Getting out and doing things" does not make me feel better, and can often make me worse. You don't know what I go through and how I suffer in my "Private Time."

I am working with my doctors and I am doing what I am supposed to do. Sometimes participating in a single activity for a short or long period of time can cause more physical pain than you can imagine. Not to mention the time it takes to RECOVER and the recovery can sometimes be intense.