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.

Frustrating day

I got the cookie dough that I ordered weeks ago and wanted to make cookies tonight but that didn’t happen. Both of my feet have decided that if I try and stand on them, they will attack me with cramps. So I am again stuck in bed to rest my legs and feet. I sometimes wish I had a TV in my room just to have something to do other than this laptop. I know I can watch movies and such on it and can probably watch HULU episodes of stuff but I like to sit on the couch and watch TV not on my bed. Don’t get me wrong, sometimes I do like to watch a good movie while snuggling with my pillow. But other times I rather watch it in my living room so I can have a snack and drink something without having crumbs in my room.

Had a doc appt that went ok though now he wants me to see a surgeon for my CES issues. I’m scared as I never had to deal with this before and it is an embarrassing issue. It has to deal with the bowel. I no longer have normal function of my bowel since my second CES (Cauda Equina Syndrome) diagnosis. I can have accidents of my bladder as well.

The reason I have been referred to a surgeon is because my farts are causing me to have hemorrhoids and there is some fecal incontinence as well. CES’ers like to call these “Sharts”. I find them killing my dignity and sending me into a suicidal crisis every time I have an accident. It’s not that often, but it has been becoming more frequent with my bowels being more “softer” than they have been. I’m not sure if it is because of the new diet pill I have been taking or what but whatever makes me go poop, I am for it. I usually take Senna for it as it is the only thing that works without horrible stomach cramps.

The loss of dignity is what kills me inside every time I urinate on myself or have a loose bowel or my childhood favorite, skid marks. Those usually happen because I didn’t realize I didn’t stop pooping.

This has been difficult to write and I want you to know this because I think there maybe a few people out there in similar circumstances but think they are alone. Those with this nerve injury are constantly fighting their dignity and what it was to be normal every day of their lives. It take a tremendous effort to get through the day without falling apart every day. Today I couldn’t make cookies and it bummed me out. But tomorrow I can, possibly. Well I hope to before Thanksgiving anyways. I know there are people out there that say make each day count but when you only have so many spoons to deal with, it makes each day harder and harder. What is ok for today might not be that way tomorrow. I know that I stood too long today while talking with my former co-workers and that is why my feet are angry with me.

The bowels are a mess because I don’t go every day. Chronic constipation from medications suck. If I don’t take Senna every day or every other day, I suffer from horrible gas and the wet farts that cause hemorrhoids and make my bottom uncomfortable. And now I have to have someone check my bottom for something or for advice on what to do with this incontinence that I wish I didn’t have. I just hope that it doesn’t cause me to become a suicidal maniac…