bad day: stuff you don’t talk about

I have been in a rotten mood all day. Started when my bowels woke me up and I wasn’t happy about that. I don’t know if I caught a virus or something was upsetting my stomach but man I just made it. And having CES I was lucky to make it. Usually I am safe when I have hard stools, which they were. I did go an hour later again and it was softer stool. Luckily I was already in the bathroom because I had to pee. So my day started at four in the morning because of this. I have been trying to get back to sleep but either the phone kept ringing or I was getting text messages. I am very tired and though I have shut off the phone and laid down for an hour or so, I didn’t sleep. I talk about this stuff not because I want the world to know my bathroom issues but because no one talks about life after CES. People think that you are normal because you “look” normal and that is just not the case. Sure I was lucky that I didn’t poop my pants today but I could have and it would have really sucked. Normal people don’t think about these things. Sure they might be constipated or have irritable bowel but with CES the nerves that tell you to go are affected. I was lucky I had some warning with bowel cramps (which is what woke me up). But I didn’t expect that to happen at four in the morning. Even if it was four in the evening, I still would have trouble deciding if I was going to go now or later. With CES, you never know when you are going to go. And it’s tough living this way. And because my bowels were unpredictable, it meant I couldn’t leave the house like I wanted to do today. So I figured why bother taking a shower as I wasn’t going out. I will just stay stinky. The depression surrounding this is great. I don’t talk about it much on my blog but I am today because it makes me sad that I can’t do the stuff I normally can. No I didn’t have an accident but I could have. And that scares me. I try very hard to keep myself regular but it’s not always easy.

I think the reason for me not sleeping, other than my ankle deciding to act up, is because I am itching to install the Dragon Naturally Speaking software. Only problem is I am not motivated to actually do it. I have no motivation at all today, not even taking a shower. And I need one really bad as the last time I showered was Friday. I might do it tonight before going to bed. My therapist said that is my goal for the day. I kind of want but don’t want a session tomorrow but my stress levels have been enormous since dealing with my father. Then my mother calls and wants me to go to Walgreens to pick up their paper and check the price of their eggs. Screw that. I am not going out today because my bowels are unpredictable. But I can’t tell her that. I really don’t feel well so I will go with that.

I sent an email to my support group about the “lovely” day I have been having and someone wants me to take fiber. Sorry I already do. I just got a score of fiber pills on Amazon. Normally these pills run like 11-15 bucks for one bottle. I got two for the price of 11 bucks. SCORE. I really need help with regulating my bowels. I will be the first to admit it because I don’t eat right and unfortunately I don’t cook. Even if I were to buy vegetables my mother would boil the crap out of them rather than steam them so they are healthier. I swear my mother got some Irish in her because she boils just about anything or fries it. She once boiled Roman lettuce. She said it was good. I took her word for it. But I don’t eat a lot of veggies. I mostly like pizza and burgers and the occasional Thai food that I buy. I also eat a lot of cereal. I find that it helps my appetite and keeps my weight down, which is good because I need to lose weight. I lost six pounds this month and I think it is because I have been eating cereal. I will occasionally make pancakes or fry an egg but I will have cereal mostly. That is the gist of my cooking skills. I tried to make Hawaiian chicken in the crock pot last week and it came out ok but the chicken was dry. I think I overcooked it.

So I have done nothing today. I haven’t looked at my book or any books today. I haven’t written in my journal. Just did nothing but stay in bed, when I wasn’t running to the bathroom.

Shouldn’t have gone out today

Shouldn’t have gone out today

Today is a CES day that I should have listened to my body instead I gave into my coffee needs. What does a CES day entail, well, when it involves the bowels, you stay home so you don’t shit yourself. And today was one of those days. I thought after going twice already I would be ok. Wouldn’t you know that the third time was the trick?? I was not even a block from my house when my bowels erupted. I was hoping to make it and I failed. I feel humiliated and disgusted with myself. It’s not every day that this happens. And it was more than just sharting (farting and shitting at the same time). I didn’t even fart, which to me was the worse of it. Then I could say that it was more than a fart but not this time. I soiled myself and I felt degraded like I do every time this happens. I was having a good day and now I just want to die from the humiliation I feel. Worse part is that I can’t even share this with anyone but myself and therapist and maybe my support group.

As I was in the bathroom, I decided I needed a shower. I had to. So I asked my mother to bring me a towel. She saw that I didn’t have underwear and figured I had messed myself as I was crapping my bowels out. She didn’t say anything. I don’t know if I was relieved or angry. But at least I didn’t have to explain myself. I think that horror would have really brought out the cutting urges. I stood longer in the shower than I probably should but didn’t care. I know my ankle is going to thank me later for this indiscretion.

I am listening to David Nail because that is what kind of mood I am in. He sings sad songs and it resonates with me. I need that kind of soothing that his voice brings. I think he is the only male artist that touches me this way.

I’m waiting to hear back from my therapist. Hope she calls soon.

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

CES Stuff we don’t talk about in normal conversation

Bowels:
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.

The sad truth about CES

8-Dec-12

I’m faced with a dilemma. A friend of mine that I have known for the past year or so via email has just emailed saying that she is going to kill herself soon because she just can’t take it anymore. She feels no one will care and that Obamacare wants her to commit suicide anyway because she has a chronic illness and it will cost too much to keep her alive.

I feel I should let someone know but I don’t want to betray her confidence in me by telling people about her plan. She doesn’t want to be talked out of it. I understand where she is coming from and it troubles me that I can’t do anything to try and stop her. I know that if I do, she will probably not talk to me again and most likely be more determined than ever to try again or just attempt it without talking to me first about it. Her husband has neglected her emotionally. She has no one to talk to except via email. She has no close family members and is dependent solely on her husband for everything as she is in a poor state of health. I am mad at the husband for failing his wife. Maybe she is right and she will be better off dead. I often feel that way but I can feel the pain in what she writes and I know the agony and psychache she feels.

I just wrote her an email begging her not to go through with it and have me try and talk with her about things. To al least email me when she does so I can be with her so she isn’t alone when she dies. I don’t know what else to do or say to her. I know I could ask someone in the group to call her but like I said before I don’t want to betray her confidence. I know in suicide there is no confidences or promises but I hate just sitting here not knowing what to do. It really sucks to be in this type of position. Who am I to stop her? I know the pain she is going through. I know the misery it brings. I know the loss of dignity that this dreaded nerve condition brings. It’s awful that she has someone living with her that doesn’t care anymore. It makes me sad that she has to go through this alone. I hope that my email finds her and that she hasn’t done it yet. If I don’t get a response then I’ll know that I was too late in reaching out to a friend in need. I don’t even have her number to call her and check on her. I knew that she was suicidal in the past. We have talked about it many times before.I just didn’t know she would go through with it. Sometimes writing about what you are going to do puts you in a better frame of mind. It sometimes proves to be cathartic. I know that if I write the most horrible depressing, despairing letters I feel better afterwards. I don’t feel so suicidal afterwards. It sucks being in pain all the time and not having any relief. I get why she wants to do this and I respect her decision. All you can think about is death when you are in pain 24/7 because all you want is relief. Doesn’t matter how you achieve your death, you just know dying is better than living. It takes its toll on you that no one else can understand except for other who suffer with you. No one except someone with the same or similar condition can know the depths of despair, hopelessness, exhaustion, chronic pain, chronic worry that this condition brings. It’s an invisible illness as after surgery, you can’t really see the damage anymore on the MRI or x-ray but you can feel it. The constant burning, loss of sensation, loss of bowel/bladder, loss of sexual function all encompass this illness caused by stenosis, disc herniation, or trauma to the cauda equine nerves, the horse’s tail. It’s the bundle of nerves that begin where the spinal cord ends, usually at the L1/L2 vertebrae.