Tag: disability

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

by Midnight Demon, posted in cauda equina syndrome, CES, chronic physical pain

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.

just the back

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, chronic physical pain, depression, mood disorders, physical pain, suicide

I had another easy day today. I didn’t go out despite the temperature being higher than it has the past few days. I did get some work done with my book. But now I feel downhearted. I remember what it was like getting diagnosed with my condition and not knowing if I was going to walk again. I took therapy into my own hands and relearned to walk again on my own with a little bit of help from this therapist and that. It wasn’t until my second diagnosis that I really decided I was going to be the ones making the call to walk again. I have learned to walk three time in my life and hopefully the third time was the last time.

I’m also downhearted because I keep thinking of my ex and what she is up to. But I know it would be too painful for both of us to open a line of communication again. I also been thinking of my other ex as I just wrote about her in my book. I’m not sure if that part is going to stay in it or not but for now it’s there.

I know I should not be so hard on myself for things that happened that weren’t my fault but I do still blame myself for things. I should have stopped seeing the chiropractor when I started to feel better. I should have stopped seeing my ex the minute she didn’t want to be around me because I was loud (second ex). And I should have killed myself in 2005 so I wouldn’t have had to face the last few years of being in horrific pain. Nobody understands what it is like to be in chronic physical pain unless they have gone through it themselves. And no one can tell me that the pain can’t be that bad to want to kill myself because I don’t have cancer. I wish it was cancer because then I know it would be terminal and there would be an end to the pain.

It’s like with the back pain. Everyone asks me how’s the back since I have had surgery. They don’t ask about my leg, foot, ankle, bowels, bladder. Just the back. As if that one thing determines everything else in your life. I know the reason for my foot, ankle, bowels, and bladder problems have to do with my back but the fact is that they don’t think the two are connected. And that hurts. It’s like my leg doesn’t matter only my back. I didn’t get operated on my leg. Just the back.

just a bad day

by Midnight Demon, posted in Chronic pain, depression, physical pain, suicide, writing

Today I had a bad day. I can’t describe more than that because I just am so overwhelmed I might start crying again.

I had my therapy session which didn’t go so well. We ended up talking about basically me getting out of therapy which she wasn’t keen on because she knew my result. I have another appointment with her tomorrow to go over weekend planning. I feel like I am in the hospital but on an outpatient basis. I also forgot I got visual therapy tomorrow. I really don’t want to go but its too late to cancel now. I have no idea what is involved and it kind of is scaring me a little. My eye doc says it just some exercises for my muscles as they don’t like to converge when I am reading, or something like that.

I would say today was kind of productive. I got my groceries delivered, vacuumed, and got my hair cut. I ordered some healthy stuff like steamed broccoli and apples to help cut down on my carbs. Least they will be the healthy carbs.

The weather has been awful today. It has been freezing rain to hail and my back has paid the price. I still can move but I don’t know how long that will last. I have tried all the exercises I know to move my hip extensors but they still feel locked. I know once it stops raining, the pain will go away but right now it sucks! My spine aches like no tomorrow and my scar hurts like a bitch. I used to love the rain. Now the rain hates me. Probably because I can no longer walk in it. I used to love walking around my neighborhood getting soaked to the bone. It was so refreshing. Course my mother thought I was going to die of pneumonia each time I went but I didn’t care. I learned the hard way of not staying in wet clothes though. I did one time and got very sick. I never did that again.

Austin and coffee

by Midnight Demon, posted in cauda equina syndrome, CES, depression, mental disorders, mood disorders, physical pain, psychache, suicide, suicide attempt

Today was a difficult day. I had an appointment with my psychiatrist and then I had group therapy. I first stopped for coffee and had about a half hour to kill before leaving so had something to eat with my coffee. As I am sitting there checking twitter and eating, the guy in front of me sniffles. I then sniffle. We both started talking about sniffling. Well, that wasn’t the whole conversation but that is how it started. We talked a little bit about our lives and what we were up to. We became coffee buddies. I do hope I see him tomorrow, though he says that he gets there early and I am not an early riser. I was only there early because I had my appt with my psychiatrist. His name is Austin. He was telling me how people mess up spelling his name and I asked how. He said with a W. I thought, oh geez. As I left to go on my way, I asked him when he was there most days and he said that time (before 1000), which is way early for me. But who knows. Maybe he will be the reason I get up in the morning and get out of the house for my one cup of coffee.

My appt with my psych went well. This week was our twentieth anniversary. I can’t believe it. I met her when I was 17 yrs old. That was a long time ago. I never wanted to leave her and she never wanted to leave me. So the card I got her it says that we have a weird relationship. That is why we are together, or something like that. I didn’t write anything more profound. I just didn’t have the time but thought those words were enough. She was happy and said that I was the most thoughtful person she knew. I gave her 20 cake pops to represent our 20 years together. I didn’t think of anything else to get her that wasn’t too expensive and too much. I know I should have but sometimes giving gifts to a psychiatrist can be tricky.

I then went to group therapy and like last week, I had intense feelings of wanting to kill myself after the group. This time was because the walk was too much. I got within a block of the building when my foot decided it didn’t want to go any further. It was raining and cold. I pushed further to get to group. It was the same trouble getting back to the train station. I was within a block of the station when my foot got too tired so was doing whatever it walk. At one point I just stuck it out like a penguin’s foot and walk like that for a few steps. It didn’t help but it got me closer to the station. I know tomorrow I am going to be hurting. It is the price I pay for walking.

Group therapy went ok. But again I felt really bad afterwards and called my therapist because I was in crisis again. I promised myself I wouldn’t go ahead with my plans because of my psychiatrist. It is our twentieth anniversary and I just couldn’t give her a present and then kill myself that week. That would be awful of me to do to her. So again I put off death. But I didn’t put off my therapist. She wants to meet tomorrow. She is sick with a cold and I am secretly hoping she loses her voice so she can’t talk. But knowing her she will talk anyway or I will have to talk more. Either way I am stuck with this crazy person.

I wasn’t sure I would finish this paper today. I had a couple of bowel accidents thanks to what I hope to be overdoing it on fiber pills. I had the runs and crapped my pants. I just don’t have any control over loose stool because of my nerve condition CES. I lost control after my fourth surgery. It has been six years now and I don’t think I am going to regain those nerves. It really sucks. The worse part was that my mother had to clean it up. Talk about feeling like a baby. All she kept asking me was to take Imodium but that would cause more problems for me as then I would get too backed up. I hate talking about bowels on my blog but today there is no way around it. It is shitty talk but it brings out the worse suicidal rage in me. I had to email my psychiatrist and tell her I took an extra Ativan because I just couldn’t deal. It was either that or OD on Neurontin which would have just turned me into a Zombie tomorrow. But that is how I cope. I don’t really want to cut. I don’t have the urge but I do want to crawl under a rock and die. I am so embarrassed and humiliated. My dignity went out into the toilet. And I don’t think I can get it back.

What started off as a good day went to the crapper. All because I lost control of my sphincter. That is what it is like living with CES, Cauda Equina Syndrome