the Good, the Bad, the Ugly

This weekend was an eclectic mix of the good, the bad and the ugly.

The ugly resulted from a lot of reading and researching I have been doing about a movement in the UK between UNUM insurance and some psychiatric groups and their push to reclassify ME/CFIDS as a mental/psychiatric disorder, as well as,  how that may be filtering over here to America.  It breaks my heart to think what these people are doing to fellow ME/CFIDS sufferers.  (head shake) Why does greed always trump compassion and empathy?  Furthermore…

when is enough, enough?  When is politics and greed going to step aside and allow the causal link to be discovered so we can do what everyone seems to want us to do!  Get back to our lives!

It also struck me as profoundly absurd that the ideology that ME/CFIDS is nothing more than laziness or hysteria is still persisting after all this time.  I can tell you, they are ABSOLUTELY wrong.  And I proved it this weekend.

That is when the good happened!

As you know, my energy levels have been very unstable.  So when I woke up Saturday with a BURST of energy, I was stoked!  Imagine the first thing I did?  Yup.  I went back to bed and slept all day!  NOT!  That’s what this psychiatric group would tell you I do, but they’d be wrong.  I CLEANED MY WHOLE APARTMENT!  Uh huh…

I know, I know.  I should have rested or gone slowly, but all that energy – and a really dirty and disorganized apartment – it was just begging me to clean!  There was no way I was letting this opportunity pass.  What was amazing is that I cleaned the whole apartment in three (3) hours!  I haven’t done that in a very long time.  The last half-hour found me getting winded and tired but boy did it feel good to have a clean apartment!  And the smell of clean!  That has to be one of my favorite smells in the whole world.

I actually did go back to bed and rest after wards.  I was wiped out to say the least! 

Even still, about 4pm, I decided I would go to the community social event at the club house here in my apartment complex .  Starting in May of every year though December, the complex provides free social events with music, themes, prizes, and food.  I decided to go with a friend who lives here as well.  Laura, our social activity director, always does a great job and this year was no different.

I immediately started to regret my decision to go when I walked into the club house.  We had a DJ and he was loud!  At least for me.  I don’t like loud noises anymore. They really bother me.  I chose to push past that and sat down with my plate and my friend and got into a conversation with some new neighbors I hadn’t yet met.  Again, inside I was thinking this was not a good idea.

For a normal person, it was really hard to hear because of the music.  For me, it was tiring and headache producing.  I did enjoy meeting some new people, however.  I’m always up for that.

I made it from 5 – 6:30 – after the prize drawings – before I decided I needed to go home.  This is where the bad revealed itself over the next 24 hours.

I have a confession make.  I have really been struggling emotionally.  I’m not depressed but I feel really sad.  I’ve been in this funk and I just can’t seem to get out of it.  That was until the party.  Over the last 24 hours, I have been working on figuring out why I feel so bad.  Then it hit me.  It’s the cognitive difficulties I am experiencing.  They seem to be getting worse.

I really notice the cognitive dysfunction when I am engaged in conversation.  I find it so infuriating that I cannot recall thoughts, words, names, titles – things I know, I know.  But I’ll be dog gone if I can access the information when I need it.   It makes me feel like an idiot, or at other times, like I’m retarded.

To be honest…I find it very embarrassing and humiliating.  It took me years to come to terms with my intelligence.  I finally came to a place where I was able to be comfortable being smart.  Now, today, I’m smart-deficient.  It’s there.  Somewhere.  I just can’t access it.

There are days it just makes me angry!  I don’t want to not remember.

This revelation did two things for me, however.   It gave me an appreciation for my dad’s frustration and anger during his moments of what my mom thinks is Alzeimer’s Disease.  I can totally understand how he feels when he has a period where he can’t remember.  I understand how one can become angry and frustrated.  I totally get it.

Secondly, I finally realized that I need to make some changes.  I really struggle in situations where there is multiple people now and multiple stimuli.  On Sunday, I shut everything off and spent the day in ‘my cave’ as my friends used to call it.  I had actually made a concerted decision about a year or two ago to stop taking time out from the world because my friends would become so concerned about me.

However, I now realize, I need that disconnect in order to allow myself to rejuvenate and give my body and nervous system time to de-stress and to untangle itself.

I also realize, to my dismay, that I need to be careful about when I engage in events that are loud or with multiple people/stimuli.  If I am not having my “good” day, I really need to start saying no.  Again, it saddens me that I have to do this, but I don’t even enjoy these kind of environments anymore.

I really find myself liking situations where I am one on one or with a friend or two, which  are as a result, less stressful.  Makes sense when I think about it.

I wish I could describe the sensations that come from being in an environment that is loaded with different stimuli and noises.  I have this over-whelming urge to jump out of my skin and get away.  It’s as if everything in my body just goes haywire and I start to short-circuit.  Nothing I have tried reduces or stops this.  The longer I am in the environment, the harder it gets, and, sadly, the worse I feel. I also get very snarky, cranky and critical – a sure sign I’m in over my head.  I now know that this is where the sadness has been emanating from.

I want to engage in my life more … not less.  But this last year, it just hasn’t been that way.  I find myself repeatedly battling tears.  I want my life back.  I want this thief that stole life to give it back.  I am not lazy.  I am not experiencing hysteria.  I have this illness that just won’t let go.  No matter what I do, what I believe, what I hope for, what I want, it continues to hang on.

And that makes me sad.  I miss my life.  I miss plans.  I miss being spontaneous.

And that makes me angry.  I’m angry that the causal link hasn’t been discovered because of politics and greed.  I’m angry because my life was stolen without permission.  I’m angry because more oft than not, it’s assumed that this my fault, even though I am fighting with everything I have.

I will never give up.  Never.  But I now realize that I’m human and my emotions are involved in this journey.  I need to acknowledge them so they don’t end up owning me.

Ultimately, I have been struggling with a fear that as time goes on and my age goes up (I will be 50 in 2012) that I will lose more and more of my abilities and my memory.  That is a scary thought.  On one hand, I believe I can overcome.  On the other hand, I have now spent 20 years watching this illness reduce the circumference of my space while it continues to take more from me physically.   That then causes to me wonder what the purpose of this journey is.  I have no doubt that God can use it.  I’m just having a hard time seeing it.

My pastor once told me that when fear hits, it usually is the result of inactivity.  Once the individual gets up and gets moving, the fear will  dissipate.  That has proven to be true – for me anyway.  This post/article today is me getting up and moving forward.  It’s time not only to acknowledge the fear, but to move past it.  It’s time to surrender the things that I cannot change.

Determined to continue forward,