Myasthenia Gravis

The Spooks of Relapses

People who suffer from chronic diseases often have to deal with the mishaps of relapses.

I always remember when my neurologist told me eight years ago, “you have a chronic disease”.  Wow!!! I thought that it meant that something terrible was going on with me.  For a moment I saw the ripper coming to close for my commodity.  When I got home and read the booklets he gave me I learned that what it meant was that I would have to deal with my illness for the rest of my life.  whoosh, what a relief! So, I kissed the ripper goodbye and tended to putting my life in order.

It wasn’t easy, but I did it.  The only thing I couldn’t and still can’t control are when, where and why I always face relapses.  Relapses are when my disease enters an acute phase. You can say that it peeps around the corner reminding you that you still have it even though most of the time you feel pretty good.

In occasions they can come around without notice and other times they can appear with certain things like a severe cold or a stressful situation.  It all depends.

None the less, when they do arrive they are like unwanted solicitors or an annoying visitor.

The thing with relapses is that they remind you that you’re not okay.  You live with a disease even though sometimes it seems you’re fine.  I always think of my relapses as reminders of not taking anything for granted.

For example, most people take their legs for granted.  They enjoy walking, running, going up and down stairs, and so many other things. When everything is under control I also enjoy the freedom of my legs.  However,  Myasthenia can debilitate legs,  arms, lungs, voice, etc.  Which means that my dear legs go on strike when relapses come to haunt me.

Its as if you are going to fall in any minute.  Scaaaaaary!

Now however, dealing with mom is another thing.  She thinks my relapses are my responsibility.  “You don’t take care of yourself!”.  Wow, does that piss me off.  What she doesn’t understand (or wants to, in fact) is that relapses can occur without notice.  It doesn’t matter how much or less you do take care of yourself.  Anything can trigger it and basically you can’t do anything about it.

I’m not such a huge fan of sharing my experiences with my community (MG online communities) because reading about people’s experiences give me the creeps.  I’ve always had a hard time writing or reading about Myasthenia because acceptance has always been an issue for me.

I tend to push my condition to the back of my mind and never let it play a major role in my life.  However, when relapses come around the corner I just can’t avoid letting it take over who I am, if only for a couple of days (hopefully) till things get back to normal.  What I hate the most is the fuss of staying in bed.  I have to be on Atrovent, for my lungs, every three to four hours and my meds go up and steroids are to be taken.

If I’ve learned something (and believe me I have) out of having a chronic disease,  is that each day is God’s gift and as such, I embrace it full of joy.  Looking at it from this point of view, maybe relapses are reminders of how blessed I am to have a loving family that cares and nurtures me back to health.

So, my dear friends we need to deal with every aspect of our lives because nothing we can do will change that.  The good and the not so good!  Things are what they are and all we can do is wait until everything settles back eventually to normal.  Being normal whatever it is that normal means to each one of you.

 

 

 

 

 

 

 

Facebook

Facebook sharing: Why I don’t like it!

I am not a huge fan on  sharing personal or private things on FB.

Why?

It’s because it’s not real!!!!!!!  It gives you  a false sense of connection with people who may care something about your situation, but that can never substitute the human element of being able to hug and alleviate your anguish.  When we stop confiding and seeking comfort in our keen, something is gotta be wrong!

via Google Images

FB is for sharing the little knickknacks of your life.  (That’s my opinion anyway, you don’t have to agree with it!)

Not to be completely an idiot about FB,   you can share or ask friends and people who are only acquainted to you by FB to say a prayer for a loved one because they may be passing difficult times.   Nevertheless, you shouldn’t use FB to vent or prove your lack of doing a sh*&t for your family member or friend.

Keep your private life, PRIVATE!

For example, some time ago someone in the Generation Fabulous Facebook fan page asked for prayers for her sister and herself, both were confronting serious health problems.  She kept us updated and that was a  wonderful experience.

via Google Images

But sometimes and I say sometimes (like a rooster that sometimes comes out in the Looney Tunes cartoons), your pledges don’t match your actions.

It’s wonderful you want your community of friends to help you cross the river, but you really need to do your share of the work.  In occasions the load gets heavy.   Love is love and its amazing, but also the love you not only express in words but in concrete actions is ever more wonderful.

Here is a couple of things you may want to do to share the love,

A short visit.

Running an errand.

Helping around the house.

If the person can no longer go to a church service, why doesn’t the church move to him or her at least every month with a short service any ill person can enjoy??

They are so many things we can do as people and groups to ease a patient’s pain and SHOW our love in a way that covers more than words.

I think it was Scarlet O’Hara that said,  “Words are taken away by the wind.” Which roughly translates in words without actions are just merely nothing at all.  In other words, words are easily forgotten! (If it wasn’t her please, feel free to correct me.)

So my dear friends, stop becoming generic  FB friends and begin reconstructing and constructing genuine real friendships and keeping in touch through Facebook, and above all keep you private life private.

via Google Images

Finally, be careful with your information because not everyone that’s on FB really has great intentions, you can easily become a target even for identity theft if your private settings are not private enough.