Dealing with Uncertainty in Chronic Illness

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Sometimes I think dealing with the uncertain is something like being in the “Twilight Zone”, a fifth dimension or “a dimension not only of sight and sound, but also of mind.”  It’s that mind part that is the hardest to deal with.  When we don’t know for certain about what to expect, our mind plays dirty tricks on us making us imagine all sorts of things.  And while we do this, we can lose control over our illness and let it get the better of us.

I have not been feeling well over the past month or so in particular.  Bad days have vastly outnumbered good days.  It seems that I can get only a couple of good hours in before I have to take a rest.  And, when I try to do things, my brain doesn’t want to cooperate making the task all that much harder to complete.

I know that symptoms are getting worse.  My weakness is worse.  I am getting more of those awful stinging and shooting pains again.  I am more dizzy and I have to be very careful not to fall.  My blood pressure has been on a roller coaster ride but mostly heading down.  That’s something that I can objectively measure and track – it’s really on a statistically significant downward trend.  That might be one reason that I feel so tired.

Clearly I have many symptoms of autonomic dysfunction.  I have known that for quite some time.  Last November, I had a pacemaker implanted to help deal with the severe bradycardia that I had from cardiac neuropathy.  Before that, I have had abnormal results on autonomic testing dating back to when I last went to the Mayo Clinic in 2011.

A lot of my symptoms appear to be related to some kind of brainstem problem.  I have been diagnosed with Paraneoplastic Neurological Syndrome related to the Stage IV Melanoma that was found in 2008 and 2009.  This syndrome appears to have symptoms of a number of classic paraneoplatic disorders but is dominated by myelitis, myelopathy, myoclonus and progressive neuropathies.  And, a lot of pain.

Right now I am going through another round of testing and am waiting for the results.

Uncertainty.

Hard stuff to handle.

The unknown.

The “Twilight Zone”.

My MRI of the brain did not show anything definitively abnormal.  That’s a good thing but it really does not prove anything one way or the other.  Many paraneoplastic conditions would not show up.  At least it probably indicates that there is no significant metastatic disease going on right now in my brain.

I am now awaiting results of a bunch of lab tests that had to be sent away.  Cancer itself was a little easier to fight because I could really get to know the enemy very well.  Some of my doctors told me that I likely knew more about melanoma than most physicians.

But this paraneoplastic syndrome is apparently my own body fighting against itself.  And much less seems to be known about it.  Many anti-bodies have been discovered that help predict which syndrome or which cancer might be causing symptoms.  But many more are yet to be found.  So, that puts those with the disease at a disadvantage.  You may have it but the tests don’t show much and it leaves you wondering just what you are fighting.

I do have one anti-body but it does not definitively explain all of the symptoms that I have.  Much of what I have is similar to what someone with diabetes would develop over time, especially the neuropathies.  But the combination of symptoms is probably worse.

I have tried to fight back with diet and as much exercise as I am able to do without causing even more problems to develop.  I am sure that it has done some good and perhaps has helped keep the illness relatively stable for many months.  But the illness is creeping back and slowly progressing in noticeable ways once again.

If nothing is found in this round of testing, I already have an appointment at Mayo next month.  More tests and perhaps more answers will come.

I suppose my greatest fear is that I will just go away suddenly without feeling like I put up the best fight.  Perhaps that is what is meant to be.  Leaving suddenly is not so bad.  It’s likely much better than leaving in a slow and painful way.  I know that however I leave this life, I will go on to another one in which I will join with God in everlasting life.  So, I do not fear death itself.  But I am so uncomfortable dealing with the unknown.

What do I do?  I try to practice all those relaxation techniques that I learned in dealing with pain.  I also try to let go, put my faith in God and find confidence that the best outcome will take place.  I know it will.  Any why not?  It’s better to fight the worst with joy that wasting precious time worrying about what we can do nothing about.

So, if you are dealing with uncertainty in your illness, try to do what I try to do.  Make the best of it.  Find joy.  Use your faith.  Put your effort into making each day the best that it can possibly be.  After all, we can only impact those things that are under our control.  And there are so many of those things.  So reach out and give a hug to those closest to you.  Take time to smell the flowers.   Enjoy the sunshine AND the rain.  Do those things and you won’t be dwelling on the uncertainty and imagining all those things that are in that fifth dimension and out of your control.  Step out of the “Twilight Zone” and back into the reality of life.  Even if all things are not what you would like them to be, you likely can still make a difference.  So, go out and do it.

Read some of my other blogs.  Visit my facebook page at http://www.facebook.com/mcreyscope.  And, don’t worry, be happy in all that you do!

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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.

3 Responses to Dealing with Uncertainty in Chronic Illness

  1. Marianne says:

    David, this is beautifully written. God has reasons for you to be here. You are the only person I know who has survived Stage IV melanoma. You are a stong and good man. I saw your grandchildren on your FB site and my!! They are beautiful. Odgie just returned from sharing his mother’s 100th birthday in Brazil, so we didn’t do feijoada this year. I’m glad I found you so next time we do I can invite you and Cidy and Rachel–Assuming that Amy is living in Ireland and you boys are busy with their careers. You have such a beautiful family! Love to all of you! Marianne

    Like

  2. Pingback: Chronic Pain: It’s Real and What Can We Do About It | mcreyscope's musings

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