Category: cauda equina syndrome

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.

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!!