Category: CES

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.

notebook from the past

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

I am wretched and know not why. I am healthy yet I am ill. There is no diagnostic test to tell where the pain is from yet I want to die from it. I fear that it will kill me. A hundred years ago I’d be locked away in an asylum. This day and age I’m forced to be a functional person with no symptoms of a psychic malady.

Pain that is so bad that nothing can relieve it. Almost as if a pericardial centesis is the only way to drain the pain out but as there is no effusion it will be dry.

This is something that I wrote twelve years ago. I can remember what that pain felt like and wanting to die. It was terrible thing to live through. I talk about the effusion because my heart was aching so much it killed me and I couldn’t breathe.
Quote from Noonday Demon: “if everyone has the capacity for some measure of depression under some circumstances everyone also has the capacity to fight depression to some degree under some circumstances. Often the fight takes the form of seeking out the treatments that will be most effective in battle. It involves making the most of the life you have between your most severe episodes. Some horrendously symptom ridden people are able to achieve real success in life; and some people are utterly destroyed by the mildest forms of the illness”—Andrew Solomon
Merchant of Venice: It wearies me, you say it wearies you but how I caught it. Found it, or came by it, what stuff tis made of, whereof it is born, I am to learn. And such a want-wit sadness makes of me that I have much ado to know myself—Shakespeare

I found these quotes in a journal from 2001. It’s an old notebook of my excerpts from books and other things. I had carried it around with me all this time. Today I was going to write excerpts from Night Falls Fast by Kay Redfield Jamison but I was too tired after I had my lunch. The notebook is worn thin by use. It is probably the only notebook that I still refer to every day. I have my favorite Edgar Allen Poe letter that I copy into every journal that I own. The “I am wretched and know not why” is from there. If you ever read touched with fire, you will understand what it is like living with bipolar disorder and depression and how it relates to creativity. It really is a great book.

Today I am sidelined with pain in my ankle and a migraine that started out this morning. I have been trying to take a nap for the past few hours but I have this restlessness to do something, to write that I can’t quite quell. I chock it up to having coffee today at an early hour. I have been up since about 9 which is my normal time for waking up but I still wanted to sleep more. If you count daylight savings it really was 8 that I woke up at. I have this energy but I don’t know what to do so I went out and now my ankle is thanking me kindly in return by hurting me. I had groceries delivered today, some stuff I forgot from my previous order. I got my steaks that I have been dreaming about for weeks but never bought. I usually don’t crave meat but I haven’t had any other than chicken and fish in quite some time, possibly as far back as the summer!

So to say that I am a little tired is on the money. I also had therapy today that made me think about what I am doing or going to do with my writing for the next few days. I also talked about my writing with my co-conspirator. We have decided to write five days a week so we can have two days off. I am not sure I can do that with my blog as I like writing on it every day but I can take off a day here and there. My next writing assignment that I am contemplating has to do with CES, Cauda Equina Syndrome. I have been meaning to write about it for some time but have backed off due to the embarrassing nature of the content. I still haven’t written much beyond the title of the article. Maybe tomorrow I can write more.

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.

Dreaming about pain

by Midnight Demon, posted in CES, Chronic pain, chronic physical pain, depression, mood disorders, physical pain, writing

Dreaming about being in pain

Today I woke up at 05:30 after having a dream that my foot exploded into pain. I woke up to find that I was indeed in pain. I had somehow rolled onto my back (I am usually a side sleeper) and crossed my feet, which my bad foot didn’t like. I took a couple of pain pills and then tried to go back to sleep but I couldn’t. The pain just wouldn’t ease up until the meds kicked. By then I became fully awake and have been up the past several hours. I am starting to get cranky to the point of yelling at my deaf mother for having the TV too loud. I just took some more pain meds and some Ativan to try and take a nap.

I had therapy again today. This time I just bitched about my horrible day yesterday and we talked a little about yesterday being the anniversary of why I got into therapy to begin with: my father. I don’t like him anymore today than I did 22 years ago. He is the source of my problems and last night even though I was struggling, I really wanted to cut like I did when this whole thing started. I won’t go into detail about it because I am just too tired to stir up memories of that night. Actually today is the day I first started therapy 22 yrs ago. But it was the events on the 5th and 6th that lead up to it and me wanting to kill myself. Funny how chronic pain changes you. 22 years ago I wanted to die because my father was and still is an asshole and today I want to die because I am in chronic pain, physically and mentally. I know that I never will have a dad though I still call him that. To me he is just a sperm donor. The love I once had for him has been long gone and it isn’t coming back.

The weather certainly has got me still in pain. My spine is still aching and my thigh is just in nerve pain hell for some reason. I don’t know why. I haven’t had this type of nerve pain for at least a year or two. I hope that it doesn’t indicate that my scar tissue has grown more on my nerve root. I am always fearful of that but then the docs will just chock it up to me being overweight and the weight is compressing my nerves. I had a conversation with a doc that said that even if I was normal weight or sub-normal weight I still would have the same back problems. Being normal weight or less than what I am now is not going to really change the fact that I have had four surgeries at two different levels and that I have a deteriorating spine.

Despite being up early, I was not so productive today. I had to cancel my eye appointment because there was no way I was walking on icy sidewalks and risk spraining an ankle in this weather. I had breakfast and lunch and my coffee. I just got my tribute blend coffee from Starbucks in the K-cups for the Keurig. I love this coffee. It is such a very full bodied coffee that just tastes so good. I just wish it would keep me from being foggy brained but I think the meds are kicking in…

On another note before I take a nap, I finally found my missing journal. When I changed the sheets the other night I placed it somewhere and forgot where I put it. I knew it was somewhere in my room because why would I take it out. But it got buried in a hamper so I didn’t see it right away. I haven’t written in three days. That is a long stretch for me as I usually write every night before going to bed. It helps to relax me. Which is probably why I have been so worked up the past few days. I started writing this morning and probably will write another entry before bed. I am so glad I found it because I really like writing on paper more than on the computer. Just an FYI, there was an article I read a few days ago that said that people read slower on electronic devices than a hard copy paper. I found that interesting that the brain has to slow down to catch up with electronics than it does with say a book. But then, that is how most of us grew up with, a book and paper. I find that I have to print out PDF’s because 1) I can’t highlight the information I am reading on a computer screen and 2) I like to keep the hard copy just in case the computer malfunctions or key drive gets lost.