Category: CES

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

what it’s like to be in physical pain

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

Last night I was in wicked bad pain. I started to think about ending my life again. The pain was that bad. I don’t know what caused my pain to flair up. I didn’t do anything more than I usually do when I have a day to chill, which is most days. I took a walk to the post office and sub shop to get a sub, then went to the liquor store to get a drink and cash my scratch ticket. Then walked home. I guess I was walking out of sorts as I didn’t wear my AFO. It sucks to use it for short walks but I guess me not wearing it is causing some flare ups.

Today pain is not that bad. I did some reading on a big book that I am reading, Alexander Hamilton. I am making headway slow but sure. I have to read it when I am not too tired as my eyesight will become unfocused now. It really sucks but this week I am going to visual therapy to correct it. My eye muscles just need some adjusting. I should also be taking a multivitamin but it is a pain to remember everything I have to take. Last week I filled my weekly pill holder with everything I have to take with extras such as omega 3, vitamin d, senna, and iron. My night time meds looked like a meal. I normally take at least a half dozen pills a night, not including my pain or anxiety meds so with these pills added, there were a lot. Then I had to eat something to cover it so to coat my stomach. I tried not to eat too much, just a bowl of cereal or a slice of toast. But sometimes I will have a meal, like scrambled eggs and toast. My eating habits are not usual as I don’t eat regularly. I tend to eat every 6 or 7 hours, if that. And usually only have one or two meals a day, even though I am home and it isn’t good. I just don’t have an appetite most days.

I take a lot of meds for my various medical and psychiatric illnesses. I used to only take meds for my psych condition but since CES entered my life, I am on more meds than I can shake a stick at. And that is if I am having a good day. A bad day, I take more, especially to control the pain. Or if I just want to escape I will take some Neurontin. That drugs takes your to another planet for a couple of hours but lately it hasn’t been as effective as it once was. Which is disappointing. The only downside of this med is that it gives you the hungry horrors the next day. I have gained more weight on this med than any other but I try and eat better when I have the horrors because I know I will be eating more. It is the only time that my appetite will increase.

Anyways, last night was a bad night and now I am feeling fine and good, least for now. Pain doesn’t usually start until around 2100. If it is not too bad I will take pain meds and then be able to sleep in an hour or two. If I am up more than that, it’s going to be a night similar to last night where nothing can touch my pain and I am off to thinking bad thoughts again.

Sometimes weather can play a part in it. Right now it’s snowing so I know that the pain last night was more because there was precipitation on its way than anything. I am sensitive to this. I am just grateful it didn’t knock my back out. I have had rain storms do that and soon as it stops, I am fine. It is the weirdest thing to be in excruciating pain, not being able to move any back muscles one minute and then be fine the next.

another night of pain 2

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

19/20-Feb-13 0115

I had a long day today and I am not kidding. I have been up since 0700 and it is now 0100. I did way too much and I did it without doing too much. I just had a long day. First it was with my eye appointment and dinner with friends. I did some exercises while waiting for the bus and my foot refused to go heel to toe. It kept swerving to go back to the heel. Tired. Then I did some dorsiflexion and that really made my foot hate me. I thought I was getting better because the pain had decreased some but I can’t fix the weakness that is in my foot. Not after 12 years. It just refuses to cooperate with me and I really don’t think any amount of physical therapy is going to get my foot a 5-5 again. I have had so many trips to physical therapy that I know the exercises by heart. I might do them if I feel like it but none of them address the weakness in my foot to make it stronger. But then I am pessimistic about it ever returning to a 5-5. If fatigues quickly to go to a 3-5 and then I am screwed the rest of the day. I found this out tonight. It was tough walking home because I could feel my foot swerving to walk and by the time I was half way to my street, the pain started and I had to stop. When going up on the curb, I barely cleared it, almost stumbling. This makes me depressed and distraught. Tomorrow I am supposed to start a psychotherapy group and I am afraid that I am going to have to wear the AFO because I don’t know if my foot is going to be ok. I am exhausted but right now but I have pain and my meds have not kicked in. My back is aching because it is raining outside. All I want is some sleep but my foot/ankle is angry at me right now. I hate myself for doing the stupid exercises. I should have known I was fatigued but it’s hard to realize when there is no pain. Now I am feeling the pain because I am finally at rest and I want to go to sleep. It is always like that. Soon as the body is ready to sleep, the pain says “no stupid you are not going to sleep because you did too much today and you are going to pay for it”. I am such an idiot. Here I thought I was doing something constructive and all it did was make me hurt. I am ready to say fuck it about the group but it is my first meeting. Maybe things won’t be bad tomorrow like I predict it will. I just hope I can wake up early enough to make myself a cup of coffee before leaving the house. Priority number one!!

Problems

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

Problems

I have problems. Quite a few. I have mental illness and chronic physical pain. Both make me want to take my life. I know that you might think that the depression is causing me to think about it but it really isn’t. I am not depressed. I am in pain and when pain levels get beyond a certain point for me, I think about killing myself.

It’s after midnight. My therapist texted me back about how sorry she is that I am in pain. I asked her if I should take my heavy dose of pain meds as the moderate pain meds have not touched my pain and it is too soon to take another dose. Now my toes have been on fire and feel like they are in a vise. I hate feeling this way.

Pain is the main reason most people want to kill themselves. There has been multiple studies about how people in chronic pain want to end their life because it is not a malignant type of pain. Meaning that it is not terminal, you are not going to die from whatever it is causing you this pain. I have what is called complex regional pain syndrome that was caused by cauda equina syndrome. I have been suffering with this CRPS the past year and a half. I was diagnosed finally sometime in November in 2011. Once I was diagnosed, my life began to fall apart. I quit one of my two jobs and then four months later I was out of my second job because they could not accommodate my medical restrictions. I basically can’t walk correctly. I tried to correct it with an AFO but the pain still persists. Like tonight. My leg is swollen and I really want to fillet it open to get the shit out of it. But it will be against medical advice to do so. I don’t know why. My theory is that if the shit was drained it might get better. I don’t have the equipment to really drain it but I can cut it open and squeeze the until the shit comes out. Or maybe I just want to see the blood and see what color it is. You see when the pain gets this bad, I don’t think my leg is mine anymore. I think it belongs to an alien so why not cut it. I might not have a scalpel but I have sharp razors. I have bandages. I have tape. Cutting is something that I am familiar with but I am used to cutting my wrist up. I have the scars to prove it. The only thing that is really stopping me is the sound. A few years ago I cut my leg to see if it would stop the pain. And I didn’t like the sound. It was like cardboard getting cut. My leg was cardboard and there was even little blood. It was like I didn’t cut at all no matter how deep I was cutting.

So what am I to do except to write about how sucky my life is because of these conditions. So I have problems that no one has any answers for. That no one can help me with. It is very frustrating and makes you feel alone. You want to reach out but who do you reach out to at midnight or time after that? It was a fluke that my therapist answered me. She usually doesn’t answer my texts. I could page my psychiatrist but there is nothing she can do except tell me to go to the emergency room. I don’t want to stay there all night for a psych consult that will just end up sending me home anyway. I’m self-injurious but I am not suicidal at the moment. I’ll be able to get out of the hospital admission by saying that I promise not to do it. Which I won’t because I really don’t want to hear that sound.

Music is awesome. On my MP3 player Love Story is playing, it is my favorite time of all time. A song that I can listen to over and over again without getting sick of it. And it relaxes me. So maybe between the two pain killers, and the rest of my meds I can finally go to sleep…