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Emotions, Journey, Just My Thoughts

September is Chronic Pain Month for all With Tarlov Cysts

September is Chronic Pain Awareness month.  So, I am going to give you a bit of reality about life with pain.  Now this post is not to make you feel sorry for me, it is just a reality check for those who do not have to deal with the issue. 

To let you know, there is a level to pain that is beyond the word “chronic”.  I live that level.  I have accepted that level and I know most will not understand it until they reach the “chronic” themselves.  Remember that “chronic” is characterized as lasting around 12 weeks.  “Intractable” is lasting for the rest of your life and is constant. 

So, areas I do not like to talk about are two things.  The inability of the family and friends to understand what you might be going thru, and their inability to understand how you might want to deal with it.  The second is being a prisoner of your own home.  This post is that prisoner syndrome. 

Take me for example.  Yes, I can still drive.  I sometimes do.  But there is no more hopping behind the steering wheel and going even an hour away.  I can do 40 minutes, but know those 40 minutes will ruin my trip.  They will even make the next two days miserable.  I have the uncertainty of getting home to think about.  It takes me between 30 to 45 minutes to get to our mall.  I have gotten stubborn several times and went by myself.  Sometimes I can get there without stopping.  Most of the time I use the cruise control buttons.  I jokingly say that I am practicing for the time I will have to get all the controls put on the steering wheel.  But know that just shopping is now something I wish I could enjoy. 

My daughter is just 25 to 35 minutes away.  Yes, I drive there but not as often as I would like.  My son is three hours away.  I never get to see him unless he comes here.  Yes, I have a chauffeur that could take me, but the offer is never given.  Since he retired his life is all about him.  I get that.  He was use to me doing my own thing when I needed to do things for the children or the family.  I honestly do not think he has a clue how much I did for the family.  He is male and their thinking tends to align with the making money for a family.  His life was nice and tidy with me handling the children and home.  He refuses to change his life for the consideration of me.  I have to request he drive for me. 

Don’t get me wrong, he has taken me to TX to see the specialist and if I petition to go somewhere, he grudgingly drives me.  So, the awareness that the family needs to understand is:  yes, your life changed, but…….  The patient’s life has changed more. 

How?  We have had to bury the life we had.  Yes, that life is dead and gone.  Your life has only been given a new burden; but never forget the patient is having to carry your feelings for them being the cause of your new burden.  So, let me ask you if you have really changed your outlook.  That outlook being about how you portray, or seem to be willing to, help the patient.  You ask what do I mean?  Have you sat down and examined yourself?   Have you examined every eye roll, every sigh, every question?  Then, have you examined how you would feel if it happened to you? 

I am getting to the prisoner part. 

OK, I have had to give up a lot of driving.  Before these Tarlov Cysts, I would just hop in the car and hit the outlets.  An hour and half away was nothing.  I would drive 7 hours away and see my family anytime I felt like it.  Heck, I would even do that when the husband lived and worked in another state.  When my son was almost 5 hours away for school, I went about once a month to surprise him; and make sure he had food in his home.  I have had to bury all those things that made me a “mom”.  Now I am a prisoner.

Then, here I sit, in my own home.  It is two stories and I have sat very hard on my ‘assprin’ on the steps many times.  I don’t even share the many times, because it has done me no good to express the need for a one-story home.  It has become a fight.  I am too old to fight about things that are supposed to be considered a responsible ‘response’ to a change in life.  Common sense says, if something is a danger you remove it or yourself.  Thus, I have become a prisoner of the upstairs.  I have had to bury my need for safety.  I have had to bury my courage.  I am sometimes afraid to even walk across the room next to where the stairs go down.  I should look at it as getting more exercise.  {My poor attempt at humor.}  Sometimes, I even look at the outside of the house with loathing.  I loved the house when I first moved in.  Now?  …  That is buried too.  

What else have I buried since I am a prisoner of my own home?  Conversation.  Laughter.  My “I don’t give a damn what you think but I’m doing it anyway”, attitude.  What I hope you [patient] get is:  you are not alone.  I understand the issues of family with a chronic health problem.  The attitudes of them being pissed at you.  The competition.  The snobbery of their wants.  Their sharing of how they wished they could do something; and then they do it not caring about how much it puts you in danger.  Or them doing it and never inviting you.   Then I get the resentment we might have when we read how pitiful someone’s life is ‘because they need a break’, gotta love social media.  That break meaning, they need to go out and party.  I get the ‘wanting to just get dressed up and eat at a fine dining restaurant’.  I get the ‘wanting to just drive to a state park and walk around’.  I get ‘having to bury your old life and having to bury the need to vent’.  I get ‘burying your feelings because it does you no good’.   I get ‘crying because it seems no one cares’.  I get the ‘being blamed for your own illness’;  the ‘you made your bed, now sleep in it’.  Let me tell you, I in no way made this hellish bed and I sure did not ask for it.  I get the ‘attitude’ thrown our way of ‘we are just drama queens’.  I get the ‘burying of our wishes, just because we do not have the strength to fight anymore’.  I get the ‘voluntary action of making ourselves a prisoner of our own home’.  I get the feeling of ‘burying your emotions that you had for family, in trade for the family you find in your support groups’. 

Wow, I typed this post over a week ago.  It is one of the strongest posts filled with emotion that I have written.  I have tried to stay positive, but sometimes a good blogger hits the keys with the need to tell things like they are.  December will be 5 years since my surgery.  January of this year was five years from the start of all the discomfort  (not symptoms).  That is a long time; and then to sit here and look at the rest of my life, which could be 40 more years, is hard to do.  This post has some anger in it, which I rarely let hit my page.  Unless it is directed to the medical world; I don’t hold back on them.  I do not know if the anger is directed at myself more than any one or thing.   But I know it is there.  Anger is a major part of Chronic Pain.  It comes and goes at varying speeds and depths.

The take-away I hope the reader gets is that — someone else knows what you are going through’.   Just remember to not wallow in the anger, just as not wallowing in pity.  Get it out and stomp your feet, if it doesn’t hurt your ‘assprin’.  Then sweep it in the dust bin where it belongs. 




2 thoughts on “September is Chronic Pain Month for all With Tarlov Cysts

  1. Sometimes you have to tell it as it is, don’t you. We can try to be positive as much as positive, but sometimes we just need to let it out. I think it’s a coping mechanism. A release valve.


    Posted by Despite Pain | September 28, 2019, 8:38 am

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