Loss of Control
One of the worst things about being very sick is the total loss of control you feel. At first you have to deal with the loss of being able to determine your future and even your ultimate fate. That, in of itself, is devastating. But you eventually accept that you can’t do much about your future until your health improves. Then you try and focus your efforts on getting well … if you are lucky, you start to see improvements and your efforts are bolstered by those improvements.
But when things continue to go sour, and you see yourself getting worse and worse. Less able to do even simple things day by day. arrrgh. it’s horrible. Total loss of control, not just of your future, but your day to day life and the ability to affect your environment. Everything from making food for yourself, cleaning up living environment, doing chores like getting groceries and shoveling the walk. Heck, even getting out of bed and showering is painful and difficult some days. I’ve been seriously laid up here for over a month now with this back pain … and what i suspect is some kidney dysfunction. It’s really starting to get to me. It’s taken what little comforts I took before from being able to do those little things and thrown them out the window. It’s not just uselessness i feel, it’s extremely unsettling emotionally. Everything has been put into such a mess. Just to be comfortable, I’ve taken away our downstairs futon, and cushions from upstairs. Everyone sitting on makeshift pillows and blankets. Makes things seem such a mess, depressing. It’s so unsightly and things feel dirty - makes you not even want to be around it. Plus it takes away that little communal family event of watching tv or a movie together without having to go through some ordeal to piece everything back together and tidy up.
I’m continually struck with how unfair all this is. What in the world have I ever done in my life to deserve to live like this … to put my family through this. I’ve always tried to lead a good life and do right by the people around me. Sure, I’ve let some people down (particularly my former supervisors and colleagues - sorry guys), and I probably could have given a bit more of myself to family and friends at times. But geez, I’m a good person. And now struck down after a life spent building for my future. Now unable to reach out and grab it. Life events have even made me not want to continue along that path, but unable to find another 
So unfair.
I find myself wanting so much. Not just to be well, but to be comfortable and be content. Simple things … like i want a mattress for my bed so I can restore the household to how it’s supposed to be. I want compression stockings to keep my feel and legs from swelling up. I want some new clothes, underwear without holes, pants that don’t continually fall around my ankles or pinch at my waist so much it hurts. I want a haircut. I want some cash to get out and do things with the family and maybe find some fiends again … or at least enjoy being in a different environment in the company of strangers. I’d like a vacation, never had one in my lifetime. Be able to treat myself and everyone once and a while. It’s all unattainable. That’s hundreds and thousands of dollars I don’t’ have and won’t ever have the way things are going. Basically living in poverty here, struggling just to get by while bills continue to pile up. And i fear what little relief I was counting on in June\July is not going to be enough. Not even close. Might be able to eeeck out the same existence we have now, but nothing more. And there’s nothing I, or anyone around me, can do about it. Already doing everything we can. Sister works so hard, I’ve sold as much of my junk as I can to make things a bit easier - no more left. So unfair.
It’s not all bad. There are happy moments. There is lots of companionship and company with the family. And joy when we manage to do some things together. That is a lot, and I’m thankful for it. But, it should be so much easier, and more than there is. It’s just not right I tell ya. not right at all. I continue to wait for things to turn around … but after all this time, 15 months or more, I’m starting to doubt that it will ever happen on it’s own, and don’t have anywhere to turn for help.
February 16th, 2007 at 9:56 pm
Hello Peter,
It has been sometime since I’ve read your blog, and I can certainly see the pain and raw emotions this particular entry conveys.
Your situation is rather difficult and complicated, heartbreaking and unfair to tell you the truth, but what’s even more wrong, if to give in to it without a fight!
I know you have no reason to take the words of a complete stranger in consideration, but please, try to not let it swipe you away as hard as it seems. I can not even pretend to understand what you go through or how you feel, it is beyond my comprehension and that of anybody who has not been through the same things, but giving up is exactly what life expects you to do when it has thrown all this hardship your way, why let it win.
I have and still battle depression for many years and I know how heavy it weighs on you and tries to break you down, and strips you of your dignity and willingness to resist, I also know how good it feels to just get it and let it know it can’t go on controling you and that you’re taking control back of whatever little you have control over in your life. With me, it is not a consistent victory, I’ve lost some battles to depression, and regreted it later, i don’t claim to have control over all aspects of my life, but it’s a continuous strugle, everyday is a new day, I don’t relate it to the previous day, nor do I worry about the following one, I just live each day and each moment independently, for me to be able to process it accordingly and not be held back by the baggage I carry or the constant worry about what’s next.
I hope you find the little fighter within you, and that together, you’d reclaim your territoties back, one inch at a time. I’d hate to see such talent, and such kindness of heart being conquered by depression.
Please do not let it win!!!
Hug
Siham
February 17th, 2007 at 9:38 pm
Thanks Siham. You are right of course. The difficult part is that I feel as though I’m running out of tools to fight with. And I don’t think I’m terribly off the mark in that assessment. :S All I’ve really got left is my head, and it has deteriorated in the last couple years … and was never particularly good at these things to begin with!
But I continue. Just really hard because nothing ever seems to change for the better. And it’s been a good year and a half of fighting so far. And there’s no great thing to look forward too at the end of the fight either. Just hardships of a different form. Oh man, I’m such a pessimist. Can’t help it. Learned from experience. lol.
February 22nd, 2007 at 11:03 pm
Hey Pete,
Thanks for the comment back!
I know and can only imagine how hard it must have been, but I also know you’re a trooper, you have gone through the last 18 months with very little help, and you continue to struggle and fight, which, in my opinion speaks volume of your willingness to not let yourself be cornered like a wounded kitten … I admire and respect that in you.
I guess I am just checking back in to see how you have been for the last couple of days, and offer my friendship. I have a lot to learn from you, and may be I can offer a thing or two sometimes
PLEASE do NOT give up!
Siham
March 5th, 2007 at 12:33 am
Hi Pete, Your post made me feel miserable, which is just the way you were feeling. You convey your feelings well. I’m so sorry that you got stuck with this disease. Life is definitely NOT fair. I’m learning that everyday that I am home and not working. Depression is hard to fight when it starts setting in, but I’m managing ok. I try to take my own advice that I used to give to my brain tumor patients. “You may not get the big gift at the end of your battle…and be cured. So you have to look at all the little presents you get each day. Like someone holding a door open for you. Noticing the color of the sky. Seeing a crocus flower pop out in the snow as a sign that spring is coming. A smile in a child’s eyes. Someone at the store who said hello. Just little gifts that so many of us take for granted. My husband really was the one who taught me that before he died of cancer. He taught me when he WAS looking at the coming spring flowers, and looking at the colors in life and telling me about all the things he was noticing. In times like these we need to learn to let go of “what WAS”, not worry about “what will be”, and just live today to the best of our ability–mentally or physically. And about all those bills adding up………..can they get blood out of a stone? You can only do what you can do. To hell with anything else. Go get life…….before it gets you! And about the untidy house, or the bed in the wrong place. Who really cares. Everything gets messed up every day. You aren’t Martha Stewart! (And I NEVER will be!) Take care, you’re in my prayers and thoughts. KAT.