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.
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