Why It’s Been Difficult to Post

Image

The above Benjamin Franklin quote that I shared on my Facebook site (www.facebook.com/mcreyscope) is one of the more popular ones that I ever did (original credit retained in photo above).

We certainly do age too quickly and wise up far too late!  But that’s really not what I want to write about today.  During the month of May, I was only able to write two posts to this blog.  Not what I wanted to do at all.  I could still play around with Facebook but I simply could not seem to work up the energy or the motivation to write a thousand words or so for my blog.

Why has that been?  I really don’t have a good explanation other than I have been feeling really bad.  But this bad has been different from what I have been mostly dealing with for the past few years.  I suppose the best way to explain is to try to describe what my typical days have been like.

I still get up and go through my morning routine.  And although I am always hopeful that I might be feeling a little better, the reality soon seems to settle in.  By the time I have showered, dressed and eaten breakfast, I am overwhelmingly fatigued.  But I even start off differently.  Even though I have been a big falls risk for a long time, it seems that I must even be more careful than before.  Partly because of dizziness or lightheadedness but I think even more because of weakness.

Now I haven’t gotten weaker by necessarily doing less even though I certainly do not feel like doing much.  I make it a point to get up and walk and try to do something like roll a bag of garbage out to the can on the street with my rollator and/or walk out to the mailbox to pick up the mail every day.  I also try to do some of my isometrics every day although getting weaker is making those much more difficult to do correctly.

I think I am eating properly and watch my nutrition.  I write down what I eat in a diary which automatically tracks its nutritional content.  I even go out to eat where I know I usually get a lot of calories.  And I am not saying no to special indulgencies like dessert, beer and a dram of whiskey now and again.  But I am losing a little more weight – down to 205 pounds today from a high of over 270 pounds just over a year ago.  My blood work is OK (low WBC count and a little anemia from the Cytoxan) and my PET scan a couple of months ago did not show any cancer.

But here’s how my days seem to go.  I get up and get ready and am exhausted.  If I go somewhere and try to do something, it’s even worse.  I just simply collapse and must sleep for a couple of hours.  I hurt but the pain is no worse than what it has been for a very long while so pain is not the issue.  It’s the fatigue.

Last summer I started to notice that my heart rate was dropping and began tracking it.  A 48 hour study showed significant bradycardia and led to a pacemaker in November 2013.  This Spring I noticed that my blood pressure seemed to be getting lower and I began to track that.  After some changes in medication, the drop seems to have stabilized and it is now stable but at a much lower level than it has even been in my adult life.  I have battled essential hypertension for 30+ years so when I get regular readings at 105/70, it seems weird.

When I eat a big meal, it can drop even further still – down to 80/50 the other day.  When that happens, I either pass out or nearly pass out.  I think that explains some problems that I was having during my birthday party and after Easter dinner.  So, I am trying to eat several small meals during the day to avoid this from happening.  So, I think the blood pressure thing is just more of my autonomic dysfunction that seems to have come with the paraneoplastic neurological syndrome that was triggered by stage IV melanoma.  My home neurologist appears to agree.

One thing for sure though.  I am not going to let this latest change in condition get me down.  As evidence, this past weekend, I took an afternoon and went to a Fanboy expo (comic convention type event) and met some sci-fi stars that I have enjoyed watching on TV and in the movies over the years.  It wore me out but I wouldn’t have missed it for anything.

So yes we get old and some of us get sick far too soon.  Wish I could have been much wiser when I was a young man but I hope that I have learned a few things over the  years.

My message continues to be simply . . .  NEVER, EVER GIVE UP!  Life is far too short.  We must enjoy every day to the fullest extent possible.  We can survive.  It may not be exactly what we imagined our lives to be but there is no reason to get down.  Always look for solutions.  For me, I am going back to the Mayo Clinic.  I don’t know that they can do a whole lot more for me but you know, it’s worth a try.  They certainly see more cases like mine that they do in Knoxville.

I will try to write a little about getting ready, going on the trip and sharing some of my experiences.

Visit my Facebook page at http://www.facebook.com/mcreyscope

AND

read more of my posts here at http://www.mcreyscope.com.

 

 

Advertisements

About mcreyscope

Retired / disabled survivor of Stage IV melanoma and paraneoplastic syndrome.
This entry was posted in Chronic Pain and Chronic Illness, Inspirational and tagged , , , , , , , , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s