Tag: CES

a crazy day

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

I know I have not written in a few days. I have been feeling exhausted. Yesterday I planned on writing but somehow the day got away from me and after the Sox game, I just was not in a writing mood.

I woke up this morning in pain, which is unusual as most of my pain is at night. But my foot was cold as it was a bit chilly in my room despite my foot being under the sheets and blanket. Pain woke me up and I took my pain medication. I was going to see my therapist today but my sister had the truck so I nixed it. It was a good thing I did because my mother came home from seeing her sister and collapsed on the floor due to low blood sugar. If I had gone to Framingham and then came home, I hate to think what would have happened. There was no way for her to get up. I couldn’t pull her up so had to call an ambulance. I didn’t realize she was having a hypoglycemic attack until her words were getting slurred. Her sugar was 38 (normal is between 70-100). And this happened just a few minutes before my session with my therapist so I had to cancel on her. I felt bad but I had no choice.

So I was kind of out of my tree from adrenaline and when that wore off the pain meds kicked in making me feel very sleepy. I still am fighting taking a nap but my foot is really hurting so I think I will after I write this. I then get an email saying that my appt with my PCP is in five minutes. I mixed up my dates. I thought it was Thursday and instead it was today. Fuck! Now I won’t get a refill of my pain meds. I still have some because I have been using less of them but I don’t have enough to last me till I see him on June 20th! He has no opening until then. I hope they can process my prescription. If not I am going to really be rationing my last of my pain meds. Which isn’t going to be good as I am in the middle of a pain flare up right now. I know part of it is that the temp keeps fluctuating between 50 to 70 degrees. And my body is sensitive to those dips and highs. Starting Thursday it is going to be in the 90s for a few days. Just lovely.

I had a friend from Australia email me yesterday. He wanted my advice about euthanasia and suicide. He has a cousin that wants to die because like me, he can no longer deal with his chronic illness. He doesn’t want to do the deed himself so has hired a doctor to legally kill him. I don’t know how I feel about this. I know that I wish I had a doc that would take me out of my misery but then my thoughts are because I am “depressed”. But you can be suicidal without feeling depressed so how does that play out? I truly understand what this kid is going through and can empathize with how he feels he has no other choice but to take his life but at the same time I wonder if depression is playing into a part of his decision to die and maybe if that were treated he wouldn’t feel that way. But then I look at my situation and think how can I justify that thinking if I am going to kill myself for that very reason.

I will write more on this later. I just can’t seem to get my thoughts coherent enough to think about this.

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…

depression and mobility

by Midnight Demon, posted in depression, mood disorders, physical pain, psychache, suicide

This morning started out ok until my grumpy sister started yelling at everything. I ducked out of there before things started flying. Hehehe

I know I should be writing in my “book” but I think I will take a break today. I spent almost four hours on it yesterday and it is now up to eighteen pages. I figure I will add to it a little bit every day but it stirs up emotions and I think that is why I am frustrated right now. It is difficult writing about your struggles with suicide without feeling it when you are still struggling with it. Last night I was in bad shape. I started thinking that I would be better off dead and just wanted to die. I just don’t think I have a purpose and feel like I am just a burden on my family because I am no longer working. I am collecting a social security check and it bothers me that this how my life is right now. I can barely deal with any stress anymore without getting psychotic. I can barely walk around the block without pain. The depression is so crippling me that some days I don’t leave the house. It’s very isolating. I try to go out and even just riding the buses takes so much energy.

Today I just realized I have not left the house since Thursday. I might go out today and go to the store just to take a walk. Maybe I will just buy something that will make me feel better. A little retail therapy never hurt anyone before. Or maybe I will take the bus to Clarendon Hill and head towards Arlington. I have not ridden the buses in a long time. As long as I have my music, I should be ok.

As I’m writing this, I am listening to Linkin Park. I love this group. It always is the right music to listen to when I am in an irritable, frustrated mood. That is the type of mood I am in right now. I am also worried about my foot. I had put a sock on my foot last night because it got wicked cold and this morning the sock was still on, which is unusual as I don’t usually keep the socks on while sleeping. My foot is still some what cold as I can feel it through the sock but the sock is also irritating me. I know that if I take it off I risk angering my foot and it retaliating by causing me pain. Nerve damage sucks. I really hate this type of pain than any other because there is nothing I can do about it. The other night I had zingers, electric type of shock pains in my big toe. It was so annoying. I couldn’t sleep because as soon as I started to relax, the zingers would start, jolting my foot and waking me up. Why do I have this nerve damage? Because of something called Cauda Equina Syndrome (CES). A disc crushed my nerves in my back and left me with nerve damage in my left leg, foot, ankle, and bowels/bladder. But the damage is better than it once was. It take a long time to recover. I have had my last surgery almost seven years ago. This was the second time that I got CES. The first time was the real damage with the drop foot that I still have and also foot weakness. Because of this weakness, I get fatigued in my foot very easily and this causes me to walk improperly. Walking improperly results in the pain that I have been experiencing. And it is different every time it flairs up. I can have a barbed wire type of feeling, a pounding in my foot like someone is using a hammer to crush my toes, to feeling like my toes are in a vise.

This pain also contributes to the depression and not wanting to walk because it brings me pain. But I try to do what I can to get out of the house without too much difficulty. I try not to stand too long while waiting for the bus. I also always try and get a seat whenever possible rather than standing because the pressure and worry of the bus stopping short is always there. When I take the train, I do the same thing.

I didn’t go out again today. I decided to cook and watch the baseball game. I made a spicy tomato sauce, which I didn’t intend to make. While I was pouring a little bit of crushed red pepper, the top came off and I dumped half the container in the pot. I now have a spicy sauce. If I had some beans I could make a chili out of it.

And the closing pitcher for the Sox decides to blow the no hitter. FUCK! I so wanted this no hitter, even though it is still Spring training. Today was media day and the last media speaker SUCKS. Remdawg and Don are not even reporting the game, just letting this soft-spoken speaker speak while the game is playing. I am falling asleep.

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.