Excellent yet difficult day.

Hello good and faithful Blog readers!

Today was amazing on one hand and super difficult on the other.  My son was coming home for the weekend from college.  I did my usual light pick up and washed his sheets and comfoter so he would be perfectly at home...at home.

As I have mentioned, things are more difficult for me and it takes me longer but I can get some things done on my own.  Tay helped me by making his bed (it is very difficult to bend across since there is a wall there.) you can't walk around it. After all was set. I asked him what he would like for dinner.  I wanted him to have whatever he wanted and to be happy to be home, so I started cooking.  I use a chair most of the time. A rolly office type chair works great for me since I have a linoleum floor in the kitchen.  Sometimes, I use a stool.  You can still do things and not feel quiet so worthless, you just have to modify how you do it.  I will tell you up front, even with all my aids to help I am hurting pretty bad right now.  I am in my eternal spot on the couch, legs up 4 pillows and my trusty heating pad.  I want to sleep but hurting changes everything so I wanted to write it all out now while I am feeling it...just for you!  Feel special!

He wanted chicken, green beans and masted taters.  I also made a patented "stuff" recipe Jeff once taught me (kidding on the patent part - but it should be) for desert.  The process of dinner takes a long time when you have to do things in a handicap fashion.  However, it all got done.  I have to sit and lean over to cut all the yucky fat off the chicken and that really strains your lower back.  My suggestion to those who can would be to have a moveable island that is the height you need while sitting.  I don't have much counter space but even that is too high for me.  Little things like making dinner are such a challenge.  Most would not think so.  I mean it is just dinner right?  For those of us in this condition it is really hard.  I do love to cook so it is one thing I fight to hold onto.  However, when you are done, you are toast.  I have a really hard time after I cook but keep it to myself as best I can.  They see me walking funny or going to sit down with ice or heat but I don't think it really sinks in.  Sure, they have all had back pain at one point or another.  Only mine is a million times more intense and never leaves me.  We all forget exactly how bad it was after it has been a while.  I don't blame them.  Not at all, but it is frustrating to not have the words to be able to get the point across. Or if they have never felt what you feel. Sometimes, after I am done I go take a blazing hot bath with Epson salts to help the muscles that strain to compensate for my back.  Little things, tiny and minimal things hurt.  Those small hurts get together and say "hey, let's party" reeking havoc on all that is left of you.

Let's face it, I am getting worse.  I don't like the idea of more surgery but when you have tried everything....and I do mean everything.  I have even gone to hypnotherapy.  Ate, drank every herb known to man.  Thought of the "white healing light." Even had my nerves microwaved to take the edge off of just one part of my problem...you name it.  I will keep trying.  Someone tells me something and I save for it and try it out. I want to get better!!! You get so worn down.  Not only with failed attempts but the huge physician bills and your checking account permanently attached to the largest Hoover vac on the planet.  I worry constantly, over my health, my family, my money (or lack of) it just fills you with such distress.  I am tired.

Normally, I am happy and smiling, ready for whatever comes my way.  These days I dread each day.  When I do sleep...I want to stay that way.  I am just being honest.  You will not find fluff here folks.  I am depressed and alone to spite those around me who love me.  You get locked inside yourself.  Something so simple as dinner can wipe you out.  If I say anything, my family will take that chore on as well as the countless others and end up (even though they don't mean to) being bitter.  No one wants that.  Most of all me.  I want to do things for myself, my way.  As it stands, I have rules.  I can't even go to the horses alone.  I understand.  I really do but wow.  I just want my life back.

Me taking the time to write this, is at least one way I can maybe help someone else.  I can maybe help the caregiver know the real truth.  What the person you are caring for does not tell you because they don't want to scare you or make you feel bad when you ask too much of us.  The way we feel is more than awful.  My whole life has been a teaching experience for others.  I am so not kidding.  While I do my best to have a positive attitude, to smile, laugh and be the goofy gabber I am, it is so hard.  So, why should this be any different?  It is okay, I guess but a little break would be nice.  If you are like me, I want you to see what your caregiver goes through as well.  It affects so much.  We have got to work together.  To be honest, but in a loving way.  It is so easy for feelings to get hurt or things to be misunderstood.  This is all I know to do at this point.

This simply can not be for nothing. 

Lessons In Pain

This week has been busy already.  The weeks before as well so I am sorry I am a bit behind.  Travis, my son just started college at the University of Arkansas.  Getting him ready, as well as myself has been a challenge.  We did it and he is very happy.  Happier than I have ever seen him and that makes me happy.  However, I miss him like crazy.  When you hurt every second of every day, little things seem to pile on you like heavy bricks.  There you lie buried underneath it all wondering when will be the day the pain ends or the pain ends you.  Either seem welcome and that is a bit of a worry.  My reaction to my sons move made me think that this is something that should be written about so here goes.

Pain is a strange monster.  It changes everything!  Who you are, how you feel and what you will evolve to.  I have been told at the height of my pain I am...mean.  Most who know me, know I can be though I fight it constantly.  When people see you, they feel sympathy simply because you hurt.  They don't take into consideration the depth of your pain or your ability to deal with it.  If you are irritable, most people don't think that the battle you are fighting so desperately actually has more than one part.  Yes, it hurts.  It is a hurt nothing can compare to and I have some glorious accidents.  I am constantly told I need a helmet or a bubble wrap suit.  I know what I am talking about when I talk about pain and what it can do to you and those around you.  So, let me spell it out for those who don't know.

It happens so quickly.  What I can compare it to is this.  Think of a wonderful day at the ballpark.  The sun is shining through the leaves on the trees and a comfortable breeze is blowing.  It is a perfect 72 degrees and everyone is laughing and having a great time.  You and your dearest friend, partner or child walk to the vending stand and get a perfectly chilled beer and a hotdog.  You are walking back to your premium once in a lifetime seats that you won in a contest.  Life is good!  Then as you take your next step a World Series Hall of Fame slugger mistakes your lower back for a ball.  WHACK!  You drop to your knees and your world spins not to mention you dropped your perfectly chilled beer and dog in the dirt.  In that moment, if someone asks you anything, do you think you will (after you get your breath back) be pleasant?  No.  Not if you are human anyway.  This is what it is like for the person in pain.  Any good moment is shattered and you are left reeling from the pain.

There is another part of this equation of pain, the person on the other end.  The one caring for you.  Think for one second about the reaction you send full force in their direction.  All they wanted to know was how you liked the great seats.  You proceed to take their head as payment for the intense pain you feel.  You don't mean to but...you do.  In that one quick moment you crush them as well as the amazing day you just ended.  I know you hurt, I really do.  Heck, I feel it too but if you let it out, you can't take it back.  Once you learn this lesson you are seemingly faced with two options.  You can let it out on whomever may be in your line of fire or you can hold it.  If you hold it, you just get quiet and they wonder what they did to make you mad or it comes out later with the other 50 things you shoved down. Again, your caregiver pays.  Those of us with chronic pain need to realize that our pain is not just our own.  We share the love.  This needs to end.  For those caring for us please know we do not mean it and we don't know how to control it but we can learn together.

What I am trying is simple but seems to help sometimes.  However, when you hurt and someone else is feeling sorry for themselves it is a deadly combo.  They can't see you and you can't see them.  You just end up in a bitter match of wills.  No one wins.  I will get some feedback on this but it helps me at least put off the problem a bit.  When I am intense pain, I keep quiet.  I try to avoid deep discussions with high emotional content.  I try to keep a clam monotone voice.  Tone seems to mean everything.  You can say I love you with a mean tone (sarcastic almost) and totally feel the other person does not mean it.  You can say the exact same thing with a loving tone and it is perfect.  Same words, different tone.  So, watch the tone like a hawk.  I say "this is a bad time for me right now or  I am really hurting now can this wait" and hope that it can.  I also say "I am not mad at you but this is really bad right now." I try to let the people who love me know it is not them and I am struggling.  I sometimes post it on Facebook because people will email me or try to chat and I just can't.  I can't even form a complete thought.  I grit my teeth and do my best to make it through.

The thing you have to remember is while yes, we get the crap end of the stick it is also a problem for those around us.  Sadly, it puts more weight on us because we do not want to hurt or disappoint anyone yet, there are simply some things we can not do.  It leads to a depression like no other and a deep feeling of worthlessness.  We want to bring smiles and laughs but sometimes we can't.  We may see your lack of attention as us failing in some way.  For us, failure stings more than the average bear.  We want to please  I think if more people truly understood what pain can do things would be easier on us all.  Hopefully this helps a little.

Have a great day and remember, be nice.  You never know what someone else is dealing with or who we might punch next.  :-)

A give up kinda day!

Well, right now I am not sure anyone should read this.  However, this is to help people who ARE LIKE ME so I am sorry if this hurts anyone.  People going through this horrible briar patch of hell need the truth.  Not sugar.  It has occurred to me that being "honest" may not be the best policy when it come to friends and loved ones.  Today was a quiet day, at first.  Then it became a nightmare.  People who care about you and what is going on in your life will ask how things are going.  Some, may do a quick check up on Facebook or a text.  If you reply happy or "act" happy they assume all is well.  I say my "good" days would send most to the ER screaming.  This is my new normal.  It amazes me that people who know you and know how bad it really is (as you know, I have now broken 3 teeth in back from gritting them with pain) still expect so much from you.  FYI a "true" disability is not a vacation or a party party time.  IT SUCKS! There is not anything good about it.  I fought it for as long as I could.  I worked even when I was told not to.  I did things I was not supposed to because I wanted to work.  I am not an idiot or incapable of work and I am not lazy.  I just need to lay down sometimes.  Like smoke breaks....only back breaks.  That does not go over well with employers.  They also don't like the risk of being sued if you injure yourself further on the job.  If you are sucking off the system and CAN work - you suck.  This is why people don't believe us.  Also, just because we are disabled does not mean we can't have a nice car!  I rode to the store in the challenger and got all kinds of looks because we parked in the handicap parking.  Don't be a hater!

People who know me know I push harder than I should.  I do way more than I should.  I do it because I feel dead inside.  I feel worthless.  I need to do something!  I have worked since I was 11 in some way or another.  I have had three spinal surgeries and gone back to work after each one. Others would have tossed in the towel then.  They did a study my Doc told me about.  They said that less than 5% go back to work after one spinal surgery.  I have gone back 3 times now!  I fought it hard.  Maybe too hard.  The way I see it is, if you can give or do...you should.  When a friend or family needs me I am there.  I do whatever I have to, even when I should not.  Then I get to a point where I just can't do it yet, I am expected to do it and more.  My fault there, I always have so there is little to no grace for me it seems.  Expectations suck too!

I don't think people really know how bad this pain can be.  I don't think they can even comprehend what I actually live through each day.  They see me "faking it"  (so my loved ones don't have to worry so much) and think there is nothing that wrong with me.  Because, I keep trying to do things and I smile, laugh and joke while gritting my teeth.  They see me post a pic and think I am just having a ball when it is actually therapy (swimming) and the only thing I can do exercise wise that does not hurt.  Sadly, to date I have only gone 3 times.  Just too many other things to do.  I am so depressed right now I can't even think.  Yet, I put on a smile and do my best which never seems good enough.  I have never felt so worthless in my whole life.  

This curse is killing me slowly and honestly, I wish it would hurry up.  I know, I know, don't say those things.  I CAN'T HELP IT (yes I am screaming).  I am tired, worn out, sleepless, uncomfortable and very alone.  I have scars on my back from ice burns!  Bet you did not know you could actually burn yourself.  Yup!  You can!  Only use ice for 30 min at a time with a cover on the ice pack.  You know what I do?  I am so desperate for even the smallest break I put it on and leave it because it hurts so bad freezer burn feels better!  Now, that is sad.  I need to up my meds (even though I am nowhere near what I was on the last time before surgery) but I keep refusing because I don't want to be a junkie.  That is for another post though.

I know I can't off myself because I am not that selfish but wow...I just wish this was over.  I wish I could go to sleep and just not wake up.  I could float around in the heavens and look down on everyone going on being happy and not worrying anymore about me.  I would not be a burden to my family or friends.  Those are real thoughts and real feelings I can not share with them.  It upsets them and I don't want that but what about me?  What about what I feel?  When is it enough?  I have to ask for "favors" all the time so I don't have to get up because it is hard not because I am lazy.  That annoys everyone.  I hate to ask for anything.  I wish people knew how that felt.  Even though I would not wish this on my most hated enemy, I do wish they could feel it for just ten minutes.  Try and move any muscle and want to drop because of it.

As you can see, tonight is a bad night.  I have them all the time now.  The grinding is worse than ever I hear it in my head (grind grind grind - more like a creaky chair) with every step I take, when I sit up or down or move and it is making me crazier.)  The creak is like, when you are driving and something is rattling in your car but you can't  find it.  Lovely!  Now, it does a cool trick (NOT) where it pops really hard and I just go to my knees.  I got that gift tonight.  I had to get help walking back around the couch.  Lay down on ice (again) and wait for the spasms and pain to ease up enough to breath normally.  This was my night.  I am still on ice (I know bad dog - but I can't help it) and have my legs up.  I can't get comfortable in ANY position so I am writing it now when the pain is deep and fresh just for you.  It is the middle of summer and I have to keep socks on my feet because they are like ice and hurt because they are so cold (lack of blood flow due to compression in my spine.)  There just seems to be no end in sight and new additions are added daily.

I am tired.  I just don't know how much a person is supposed to take.  Yet, here I am still trying to help someone, still trying to be happy, still trying to be human.  Does it count?  Nope.  If you feel like I do.  As bad as it is, no matter how much pressure you are getting from the outside world...you can't give up.  You just can't.  Hang in there.  I am trying.  You can too.

Frustrations

Why you may ask?  Well, lots of reasons. One being my back hurts.  Not just the usual either.  It is really mad and I have no idea why.  I did nothing to anger it so.  It is like this some days.  So bad, it makes my stomach twist and turn.  I did light clean up today.  Made two beds with the help of my "reacher" which if you do not have one they are invaluable. They are like a really long arm with an end that grabs things for you.  However, they do not work at picking up soda cans.  Ask me what happens.  They puncture a hole in them that sprays you can you can't get away from it.  :-)  Ok well, maybe that only happens to me.

I put two dishes in the top tray of this dishwasher (I can't reach the bottom one unless I am in a chair).  I folded 2 blankets and realigned my pillows on the couch where I spend most of my days and evenings.  Trav carried the laundry for me so I sorted it with my reacher and stool and then put in two loads.  I payed the bills from my couch O' plenty pillows and heating pad.  That was it.  Why is it being so mean!  I hate being me.  I want to be someone else.