Category: cauda equina syndrome

ankle chronicles 3

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

I went to my appointments today for my primary and psychiatry. Neither had much to offer other than doing the same old same old. My primary wants me to see yet another doctor for the same problem I have been having. I want to refuse but I will make the appointment Monday to show that I am making an effort at getting to the bottom of my pain even though no one knows why I am in pain. They have different theories, each doctor I see has a different opinion or that there is nothing wrong with me because it doesn’t show up on an MRI or X-ray. I just want to be able to control my pain. Is that so wrong? That is why I see him, to get medication for my pain so that I am not suicidally inclined to end my life because of the physical pain in my foot and ankle. But let’s take it from my perspective. I have seen at least 10 medical professionals in the past year to find out what my pain is about. I have had countless sessions of physical therapy, all that have no helped my pain or ease the misery of it. And now he wants me to see my physiatrist to get yet another opinion on what is the reason behind my pain. He thinks that it is tendinitis. If that were so, I would have been cured of that within 6-8 weeks after immobilization. I have worn a boot for almost three months and still my ankle felt like it was going to fall off. To be up in pain night after night of doing NOTHING the past few months have shown that something nerve like is the culprit and not a mechanical problem like it was. Unless I am going up and down stairs wrong after 37 years. Then maybe I am doing something mechanically wrong flexing and reflexing my foot in the upward and downward motion of stair climbing. But no one know this for certain. Hell I don’t even know. I have to take the steps one step at a time to avoid falling. I have gotten so into the habit that I no longer do one step after the other on the stairs leading away from my bedroom.

I am tired of having to explain my pain every month but have decided that I am not going to take my pain medicine every day that I am suppose to. I have no appointment with my primary in a month like I supposed to either. So my little experiment will be can I go a few weeks without pain medication. I know this prospect scares me a little but I feel that I have to at least try this. My only fear is that it will bring on a pain cycle that will be hard to break once it starts. I know that if I don’t do this I might as well try and kill myself now. What is the point of going on like this if I am just going to have panic attacks worrying about pain all the time like I do. I have zap pain, I have burning pain. I don’t have pain down the leg. I don’t have back pain. I just have this fucking pain in my ankle and foot that does not go away except for when I sleep. It is with me 24/7. Some of it I am not aware of because I have gotten so used to it. But if I stop and think about it, it is there, buzzing like a bee.

lack of sleep is a costly thing

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

I can’t sleep but then it’s early for me. I have been thinking about all the nights I have not been able to sleep because of pain, because of worries, because of things that keep running through my head.

Tonight I feel suicidal but I am not going to act on it. I just don’t feel the lethality of my thoughts anymore though if given a chance to actually act on them I might do it. I just don’t care anymore. If I live, if I die. What difference does it make. I still will be doing the same thing tomorrow that I am doing today, nothing. I realized that because I don’t sit down, say in a chair, it has helped my leg get better. I don’t know how better as the pain is less but when I walk or have a long day, it will flair. Even on days when I don’t have long days or walk it will flair up. There is no rhyme or reason as to why this happens. But it bugs me. I need something to do because I am going out of my mind. I have MASH DVDs that I can watch but I don’t watch them. I have other programs I can watch but I don’t. I can clean my room but that just overwhelms me. I try to go out at least once a day but even that seems to be too much of a hassle for me. I am becoming a hermit and I don’t like it. I know tomorrow I will have to go out to pick up my prescription. I probably will get a soda as I have not had one in a few days. I might get a tonic water to avoid the calories of a soda as I am watching my weight. I also might mix this tonic water with some gin and have a drink. I love gin. It tastes so good but I can’t have too much or I will get sick.

I just tried stretching my legs. It felt good. I wish I could remember to do it every day. Maybe then they won’t be so tight. Right now it’s nine thirty in the evening and I am thinking of going to bed but it hold no good dreams for me. I dream about work or killing myself. And this saddens me. I hate trying to go to sleep. Unless I am severely exhausted, I will fight it till the end. No matter how many pills, I take to get to sleep it seems my body always fights it no matter what. It is so frustrating. My lovely Neurontin that I love to take to zone out no longer works for me, even at high doses. I used to be able to sleep a good twelve hours, now I’m lucky to sleep five. That is my interval, four hours maximum. Where I used to sleep till 10 am or later, I am now waking up between six and eight in the morning. I hate this. I need something that makes me sleep longer but I don’t know what to take to let me sleep. Maybe some benedryl. I don’t know…

And this is all if I don’t have pain keeping me up. If I have pain then I am not sleeping at all. I writher in agony until the pain meds bring me some relief. Then soon as they wear off I am in pain again it starts the cycle all over again. The doctors don’t get it. They see me at 2-3 in the afternoon when I am not at my worst pain and think I am doing ok or better than I was the month before and give me my pills and say have a nice month before coming back to tell them the same story of losing sleep because of pain. Pain that wakes me up. Pain that keeps me awake. They don’t care. I am the one paying the price and they don’t care. They think that 2-3 pills a day is an adequate dose to keep me from withering in agony but they don’t see the price it is costing me. Lack of sleep. Lack of ambition, lack of motivation to do things I normally do. I tell them all this and still all I get is lose weight and be more active. I’ll be more active when I am dead…

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.