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Daily Life, Emotions

Sometimes We Think We Are Invincible 9/4/2015 Revisited

Dear Readers and Fellow Bloggers. I took off for a few days to head to North Carolina, for a funeral.  I tried to start a post there.  I am sorry to say that I could not complete the post;  it kept me feeling like crying.  So, here is another Revisited post from 2015.  If I get brave enough to complete what I started I will post it in a day or so.  

Copied from the post in 2015:

There are a few things that we feel we may never be able to do again.  Shopping for hours; vacuum every room in one day; and clean showers are the easiest to come to mind, in other words my favorite.  But I found another maybe ‘shouldn’t do.’

Having painted today, I now know it is a no-no for a while (for me ‘awhile’ could mean till tomorrow or weeks, months).  For those thinking I can’t believe she would even attempt; in my defense, they were doors that were on the garage floor.  Should have been simple, right? 

Sometimes we want things done and there is no one to do them.  We just plow on and do that little chore.  By doing this we know we are risking having a flare up, but on the bright side, we learn how far we can press ourselves.  Yes, we might get mad about the total of our situation.  Yes, we might have a moment of self-pity.  But, how we carry on, after the initial set back, tells us a lot about ourselves.

Do we just lie on the couch, because that is our favored repose, and pout?  Do we say, “oh well, maybe tomorrow”?  Do we blame everyone in the home?  What I do, honestly, is it all!  Yep, all of it.  Then I kick myself in the butt and smile.  Yes, there is stinging, soreness and a little tummy upset from the meds, but…… I GOT SOMETHING DONE!  Maybe just partway finished, but I did it.  Yes, it was something I was reluctant to tackle, but I did it.  I celebrate something [anything] small.  Example: I did not fall on my butt as I did a few weeks back cleaning my oven.  Miss Grace on her knees, cleaning the oven and falls over.  So, I now feel a little self-worth grow again.  I might spend the night on my couch, but I am anticipating tomorrow.  What can I get into?  Hummmmmm.  I might be limited to my couch, but there is always netf—- and some movie or home show I need to see.  The best part is how much I can pester the husband for a meal he picks up, or, that he cannot have the garage back yet.  Those doors haven’t been finished yet.  See, there is always a bright side, if you are mischievous enough to think of one.

For the family members of a person with this lovely disease, or any chronic pain disease, how you respond is also affecting the sufferer’s emotions.  You can choose to celebrate the things they were able to do each day with them; or you can choose to just ignore their little achievements.  Most Tarlov’ers slowly become disheartened to the loss of their abilities.  [The ones with small children have my tears.  Think of not being able to pick up your child and hug them.]  They start feeling their worth to the family is diminished.  They may not be able to clean as before, and heaven forbid (to some family members) if they have to quit their jobs.  I, for one, have one of the better spouses out there.  He was willing for me to seek a specialist that was over 800 miles away, and I have not once heard a negative comment (out loud) from him on my ‘not being able to clean’.  He might even know my entire not-pain words.  He knows I spend a lot of time on FB reading about other Tarlov’ers thoughts and needs, and some mornings he will even help me move downstairs before he goes to work.  Not nary a negative word comes from him.  But, let me tell you we would have a very rocky time of it if he were different.  The ‘not being able to do as much’ is more my hang up than his.  So, choose one day a week to surprise your sufferer and buy paper plates and dinner on the way home.  If what defines your love for the patient is more than your home being spotless and meals not being homemade, let them know.  There is more to intimacy than having the physical act, which can cause pain for many.  A Tarlov’er needs emotional intimacy and support more than you think.  It is not just their tail bones and buttocks that hurt, it is their heart.

Let me know if there are things you wish you could enjoy again.  I apologize for any grammar errors, my proofreader cannot look over this one, since I gave him praise.  We don’t need that ego any bigger.

While re-reading this post I tried to think of something to add.  But this post can be a timeless post for anyone with Tarlov Cysts or really any disease that caused pain and loss of body function. 



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