I just finished reading Michelewin's caregiver diary, if you haven't had the chance to look it over here is the link. Caregiver Diary
I can't truly say it has changed my own view towards caregivers. I know a few including 3 in my own family and I think they are all real heroes. Ever since I was a little kid I always wanted to do everything myself. My favorite phrase back then was "Me do it !" I didn't want anyone to do it for me. I didn't care if I screwed it up I wanted to do it all by myself. Have to laugh. Trying to do everything myself now is way out of the question., yet I continue to try and do more than I should. I am pretty stubborn, guess that can be a good thing when dealing with chronic pain but not always. I know I do some things that will put me into more pain yet I do them anyway.
These last 4 years I have had to rely much more on my wonderful wife. She has stuck with me when a lot of people would have bailed at the first sign of weakness. She has stepped up and taken on so much more since I have become a useless lump. Okay I am not a useless lump. Just feels that way at times like whenever I have to ask her for help. These last four years have changed me, hopefully for the better. I wasn't a bad person to begin with but I think I have learned a bit more compassion and understanding and that will make me a better human in the long run.
I have read a lot of diaries from people living in chronic pain and I have noticed a lot of people kind of skip over one fact of life for us. Anger. I have a lot of anger. Some of it is because of how I have been treated by pain management and the Dragon Lady. Some of it is directed towards my body. How dare it fail me this way. Lastly a good chunk of it is being focused upon our elected officials. I am not talking about just Republicans though they will get a heaping helping of it but also Democrats. Neither party is doing squat about chronic pain.
I know that neither party has anything to do with curing chronic pain. Hell I truly doubt there is a cure out there since there are so many different causes. Fix one and there are still dozens more that will leave you with chronic pain. So I am not looking for a cure. More along the lines of how we are treated. Currently it seems as if we have lost our rights as citizens in this great country. We are all guilty until we can prove we are not drug addicted junkies and even some of them have conditions that leave them in pain. We are treated like criminals from the doctor to the pharmacist to the general public. We have all had the experience of having our prescriptions denied or know someone who has had it happen to them. We all have horror tales about doctors both in the pain management field and not. We have all had friends and family tell us how we will become addicts and junkies just because we use narcotics to try and deaden the pain. I am fed up and pissed off. Remember up above I said I was stubborn ? Well that will come in handy since I am going to start butting my head against the brick wall that is our elected officials. That is one part of the reason why I was willing to help start this group on DK. We can use all of your help. Don't worry I won't hit you up for money. In fact what I want is that you help us spread the word. You can do this by telling us your story. Write a diary and post it to the group. Share the stories on FB and twitter and other social media sites. Comment on the diaries that are posted. Share and recommend them. Share your compassion among those in the group and anywhere else you can. Join the group. You don't have to write a diary if you don't want to. No one will be cracking a whip to make you post one.
The truth is some of us have no way of getting rid of our anger and lowering our stress except by telling you all about it. It works as a pressure relief valve to be able to get it off our chests. It helps us to put it into perspective. Those of us who live in pain have a lot of stress and anger in us and so do those of us who are caregivers to people who need help. As I write this I can feel my stress dropping, I have just come home from an appointment with the Dragon Lady. I didn't get dismissed which was what I figured would be the result of the meeting today. I kept my temper in check and even though I had this immense desire to strangle her I didn't. They have been sitting on the prior authorization form from my insurance for my Lyrica prescription for 2 weeks and then some. In fact it was on top in my chart. I just about lost it at that. I weaned myself off when I realized I wasn't going to get anymore so I didn't have to suffer from the withdrawal. They also once again refused to change my meds so that I might actually get longer relief. I think she hears stronger when I say longer. They rhyme but are not the same. Yes stronger can equal longer but they also have time released meds they could try and see how those work but they won't. That makes for a lot of stress and anger.
Michelewin states in her diary that it is a vicious circle for her and I know exactly what she means. Thanks to my medication I don't sleep well. I wake up a lot from jolts of pain shooting through me. This lack of sleep makes me cranky and also raises my pain. This causes stress which builds until I can find an outlet for it. The more stress the less my medication works. Hmm seems we are going in a nice little circle. This must be what driving in Nascar is like. Round and round. I am not perfect. There have been times I have been short with my wonderful wife. Times when I have bitten her head off over something stupid or small in the scheme of things. That's not really fair to her yet she let's me do it and forgives me when I realize what a jackass I have been. All the stres and anger and BS make it much harder to put up with the BS and stupidity I see at work. It takes a huge amount of control to not go off on some of my co-workers,
Let's jump down past that orange jungle gym.
I could go into a rant today about PM. Seems like they are getting dumber and dumber. It takes more and more control to not go off like a tea kettle on the stove. I have had the feeling that I had steam coming out my ears a few times while I am there. Then we can throw on all the helpful hints I get from people who should know better but don't. If I hear one more person tell me all I have to do is lose some weight to get rid of all of my pain I will strangle them ! With their own tongues! Yes I know that would help. Yes I want to but with out being able to exercise much other than in the water it is really hard to do. Thankfully it is coming up on summer and soon the pools will open and I can start to get some exercise again. STOP! Now don't say it ! I mean it, don't say it ! Yes I know walking is good for me. Actually you don't know that walking is not good for me, it is actually dangerous. Why ? Because I fall down and go boom. Sure these people mean well but I am fed up with all of the stupid comments. Just do X or Y or Z and your pain will be gone. I don't mind suggestions from people who are in chronic pain or caregivers. They know what they are talking about.
Well as I said I could go into rant mode at the drop of a hat apparently. I am not wanting to do that today. Instead I kind of want to tip my hat to all of the caregivers out there. They really are unsung heroes. Every day they sacrifice their time and their sanity for those of us in chronic pain and those who need help every day. There are tons of them out there. Not getting paid and yet giving their all every day to a family member or friend for whatever reason. They do the dirty work if that is needed and more. They do it all. So thank you from the bottom of my heart. I know I don't say it enough to my awesome wife. I love her and really do appreciate all she does. If we had to pay for this care we could never afford it. They show unlimited love and compassion every day in everything they do for those of us in their care.