National Invisible Ilness Week

So this is National Invisible Illness Week.  Interestingly enough, I have had my illness an entire decade. Ten years this past June.

John and I had a major discussion/disagreement just last week concerning how I see this RSD/CRPS(Reflex Sympathetic Dystrophy or ChronicRegional Pain Syndrome).  I get upset when I think he expects too much out of me when I am having a bad day and just moving from place to place is all I can do.
Me:  I have had this crap for ten years why don’t you GET it? (not the disease—the fact that I can’t always do what is necessary or what I want to do.)
He:  How am I supposed to GET it when you don’t ever let me know what is really going on?  
He:  You are the ONE who doesn’t get it.  You say you have accepted it but you still have NOT.

Me:  Sadly---he is right.  For ten years I get up each day, and let me tell you, many days I can barely muster the IDEA of getting out of bed---let alone doing it.  But I do. 

I happen to be one who has progression of the disease.  Familiar symptoms appearing in a previous unaffected area used to freak me out.  Now I just sigh with frustration.  There is little to do or say.

Rsd will NOT kill me but there is no cure.  You are supposed to ‘treat the symptoms’.  While on L and I, I HAD to take any and all medicines thrown my direction.  I developed allergies and terrible side effects to many of the drugs.  The long list of intolerances is appalling.  I laugh that I would not make more than a few days on street drugs.   One drug, Cymbalta, at high doses, did help the unrelenting burning numb pain.  It was like a miracle drug.  The longer I was on it, the more fearful I grew to try my life off of it.  I was slowly losing my mind-----I couldn’t retain anything.   I love to read----I could read a book one month and pick it up and reread it a month later and not realize I ever read it before.  I would hear things coming out of my mouth and think “what the hell was that about?” My weight ballooned, another blow to the ego, and my cholesterol really shot up. I rarely had an overly emotional response to anything.

This past December I weaned myself off of my drugs…..some I have had to restart.  I have remained off the Cymbalta and have found my real brain again.  I have fewer memory lapses. When my pain levels are way up there, I am tense and more stressed and that causes a vicious cycle.  This last blood test, my cholesterol had dropped almost 100 points!!! I no longer feel like I am in la la land and actually have more emotional reactions to things.

There are times I wish I had had an illness that people know about and can understand.  That is just silly on my part.  I want my family and friends to “JUST GET IT.”  Many still don’t and will never even try or care to ask.  When I show up yet again in an air cast or crutches or both, I often get, “What’s wrong with you NOW?” kind of responses. 

RSD causes ME unrelenting pain---burning, aching, throbbing, stabbing, echoing, numbness, tingling, etc.
It destroys muscle and bone and tissue. It can affect organs.  My entire right side is the most affected, although I have symptoms on the left.  My face and tongue are the worse.  My entire face and tongue feel like Novocain is just starting to wear off…………..that numb, tingling, can’t feel your face sort of feeling.  Then you add sharp jabbing electric jolts through it and that is pretty much it.  Even the right side of my face droops from loss of muscle tone-----NO not that aging type----ha----.

My joints swell with over use and get stiff with underuse.  There is a fine balance between the two.  The old adage “Use it or lose it” is very true when it comes to this illness.  If you don’t use your affected limbs or digits, they get stiff and useless.  Swimming is a wonderful gift to me.  I have always loved the water.  I can still swim and it causes relief in a lot of my joints/muscles.  I haven’t been in the pool since January.   Surgery on my Big toe joint ceased that, then the ankle sprain.  Now I have to have surgery to repair a major tendon coming off that ankle……..just am so weary don’t want to set the date just yet. Our own pool installation is going very slow, with a few unforeseen setbacks.  We hope to be able to swim in it before we have to button it up for the winter months

When I am around my children and grandchildren—even John, I pretend everything is normal.  I don’t want to NOT be able to do something.  A very few times, I have had to stay away from an event or an activity.  I rarely let that happen.  I am active and jump into whatever is going on.  I don’t want to let anyone know I am in pain or the reason we don’t do something.  I am my worst enemy that way.

I am still trying to find a balance between letting them know what is really happening.  I am afraid.  I am a coward.  I don’t want to have them look at me like I am handicapped or less than I see myself.   I know that this isn’t healthy behavior.  When we are over visiting them or they are here, I do everything anyone else can do.  But then a week later, I am still hobbling around on a still overly swollen knee and opposite ankle or literally ‘down for the count’.   I see myself being weak if I show pain or talk about it.  Who wants to hear that?

I admire others living with a chronic illness who seem to have it all together.  I know I have a very long way to go.  Now that I am off my Cymbalta, I am interested in my art again.  I am trying to make a renewed attempt to get back into it.  It really helps keep my focus off of the pain. 

If you know someone who has a chronic illness, give them a call.  Just tell them you love them.  Accept what they have is NOT them.  Encourage them.  Root for them.  Small things mean so much.