depression and mobility

This morning started out ok until my grumpy sister started yelling at everything. I ducked out of there before things started flying. Hehehe

I know I should be writing in my “book” but I think I will take a break today. I spent almost four hours on it yesterday and it is now up to eighteen pages. I figure I will add to it a little bit every day but it stirs up emotions and I think that is why I am frustrated right now. It is difficult writing about your struggles with suicide without feeling it when you are still struggling with it. Last night I was in bad shape. I started thinking that I would be better off dead and just wanted to die. I just don’t think I have a purpose and feel like I am just a burden on my family because I am no longer working. I am collecting a social security check and it bothers me that this how my life is right now. I can barely deal with any stress anymore without getting psychotic. I can barely walk around the block without pain. The depression is so crippling me that some days I don’t leave the house. It’s very isolating. I try to go out and even just riding the buses takes so much energy.

Today I just realized I have not left the house since Thursday. I might go out today and go to the store just to take a walk. Maybe I will just buy something that will make me feel better. A little retail therapy never hurt anyone before. Or maybe I will take the bus to Clarendon Hill and head towards Arlington. I have not ridden the buses in a long time. As long as I have my music, I should be ok.

As I’m writing this, I am listening to Linkin Park. I love this group. It always is the right music to listen to when I am in an irritable, frustrated mood. That is the type of mood I am in right now. I am also worried about my foot. I had put a sock on my foot last night because it got wicked cold and this morning the sock was still on, which is unusual as I don’t usually keep the socks on while sleeping. My foot is still some what cold as I can feel it through the sock but the sock is also irritating me. I know that if I take it off I risk angering my foot and it retaliating by causing me pain. Nerve damage sucks. I really hate this type of pain than any other because there is nothing I can do about it. The other night I had zingers, electric type of shock pains in my big toe. It was so annoying. I couldn’t sleep because as soon as I started to relax, the zingers would start, jolting my foot and waking me up. Why do I have this nerve damage? Because of something called Cauda Equina Syndrome (CES). A disc crushed my nerves in my back and left me with nerve damage in my left leg, foot, ankle, and bowels/bladder. But the damage is better than it once was. It take a long time to recover. I have had my last surgery almost seven years ago. This was the second time that I got CES. The first time was the real damage with the drop foot that I still have and also foot weakness. Because of this weakness, I get fatigued in my foot very easily and this causes me to walk improperly. Walking improperly results in the pain that I have been experiencing. And it is different every time it flairs up. I can have a barbed wire type of feeling, a pounding in my foot like someone is using a hammer to crush my toes, to feeling like my toes are in a vise.

This pain also contributes to the depression and not wanting to walk because it brings me pain. But I try to do what I can to get out of the house without too much difficulty. I try not to stand too long while waiting for the bus. I also always try and get a seat whenever possible rather than standing because the pressure and worry of the bus stopping short is always there. When I take the train, I do the same thing.

I didn’t go out again today. I decided to cook and watch the baseball game. I made a spicy tomato sauce, which I didn’t intend to make. While I was pouring a little bit of crushed red pepper, the top came off and I dumped half the container in the pot. I now have a spicy sauce. If I had some beans I could make a chili out of it.

And the closing pitcher for the Sox decides to blow the no hitter. FUCK! I so wanted this no hitter, even though it is still Spring training. Today was media day and the last media speaker SUCKS. Remdawg and Don are not even reporting the game, just letting this soft-spoken speaker speak while the game is playing. I am falling asleep.

CES: Stuff we don’t talk about in normal conversation

CES Stuff we don’t talk about in normal conversation

Could be incontinent, constipation, or loose stool. Everything that is your worse thoughts about it can happen. I know I usually write about pain and depression but I also get a few people that have Cauda Equina Syndrome looking for information/. So I decoded tp talk about the bowels because it is the most horrifying, indignant, humiliating business that someone with CES goes through.

Because we no longer have normal nerve function of the bowel, our pooping system is a mess. We need to keep track of what we eat, what gives us the runs. Also need to keep track of when we go. Forgetting when we last went can give us huge consequences such as impaction to an all out marathon of spending the day on the can.

Most CESers are on a variety of medications that cause constipation. It sometimes can take what seems like a stick of dynamite to get things going and then when they do, all hell breaks lose. Other times we push and strain just to get a rabbit pellet out. This kills me when it happens because it feels like I am pushing a softball out of my anus and instead it’s nothing more than a tiny golf ball. Then because the stool is most likely hard, you get hit with nerve pain so bad you want to pass out or blow your brains out. Nerve pain in the rectal area is so painful you wish you never have another movement again. Sometimes this pain goes away, other times it doesn’t and you are stuck with proctalgia for days. This type of pain is different than the ball in the butt feeling. The ball in the butt is a constant sort of pain that is always there. This nerve pain is like a red hot poker going right through you, causing you to feel pain so internally like you never had before. Luckily I don’t have this pain every day or I would commit suicide. It only happens when I pass hard stools.

I do suffer from incontinence at times with loose stool. I’ve found that I cannot tolerate cottage cheese like I did. It causes the runs and I am on the toilet for the day.

Most CES sufferers try to have a bowel regimen. It involves either the use of laxatives, enemas, stool softeners, or fiber. In some cases, manual evacuation of the bowel is required because the bowel is so weak you can’t push it out. Occassionally or maybe more than not there is the danger of impaction. That usually requires a hospital visit and it can be humiliating.

Getting used to the anxiety of going is not something to take lightly. There are days I don’t leave the house because of fear of an accident. There also are times where even at home I dread going to the bathroom because I don’t know if it will be good or bad. Sometimes even while on a regimen there will be days of miscues and accidents. Finding one that actually works for a good length of time is like finding a secret formula. One day this will work, another day something else will. Everything you have taken for granted before this happened to you is lost. And there is no greater loss than crapping your pants.

Some people have found it helpful to have a poop day. It is a day that is set aside just for that reason, though you can’t always rely on that one day to go. Luckily my condition is not that severe that I require it, but it something to keep in mind to have some measure of dignity and control that we have lost.

Living with CES is hard. You need to keep track of so many thing, fluid intake, bowel output, bladder output, where your feet are at all times so you don’t trip over them. It’s crazy. It’s been a difficult twelve years living with this condition. I’ve lost my dignity more times than I can count. It’s such a shameful condition. Some people can brush it off after the hurt and even laugh about it afterwards but some people are like me, can’t, It hurts not being able to control bodily functions like you used to. It makes you want to throw caution to the wind. Mobility is another issue. If you can’t walk fast enough to the bathroom, that is the worst. Most find that they need a commode near their bedrooms for this reason.