Category: cauda equina syndrome

Frustrating day

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

I got the cookie dough that I ordered weeks ago and wanted to make cookies tonight but that didn’t happen. Both of my feet have decided that if I try and stand on them, they will attack me with cramps. So I am again stuck in bed to rest my legs and feet. I sometimes wish I had a TV in my room just to have something to do other than this laptop. I know I can watch movies and such on it and can probably watch HULU episodes of stuff but I like to sit on the couch and watch TV not on my bed. Don’t get me wrong, sometimes I do like to watch a good movie while snuggling with my pillow. But other times I rather watch it in my living room so I can have a snack and drink something without having crumbs in my room.

Had a doc appt that went ok though now he wants me to see a surgeon for my CES issues. I’m scared as I never had to deal with this before and it is an embarrassing issue. It has to deal with the bowel. I no longer have normal function of my bowel since my second CES (Cauda Equina Syndrome) diagnosis. I can have accidents of my bladder as well.

The reason I have been referred to a surgeon is because my farts are causing me to have hemorrhoids and there is some fecal incontinence as well. CES’ers like to call these “Sharts”. I find them killing my dignity and sending me into a suicidal crisis every time I have an accident. It’s not that often, but it has been becoming more frequent with my bowels being more “softer” than they have been. I’m not sure if it is because of the new diet pill I have been taking or what but whatever makes me go poop, I am for it. I usually take Senna for it as it is the only thing that works without horrible stomach cramps.

The loss of dignity is what kills me inside every time I urinate on myself or have a loose bowel or my childhood favorite, skid marks. Those usually happen because I didn’t realize I didn’t stop pooping.

This has been difficult to write and I want you to know this because I think there maybe a few people out there in similar circumstances but think they are alone. Those with this nerve injury are constantly fighting their dignity and what it was to be normal every day of their lives. It take a tremendous effort to get through the day without falling apart every day. Today I couldn’t make cookies and it bummed me out. But tomorrow I can, possibly. Well I hope to before Thanksgiving anyways. I know there are people out there that say make each day count but when you only have so many spoons to deal with, it makes each day harder and harder. What is ok for today might not be that way tomorrow. I know that I stood too long today while talking with my former co-workers and that is why my feet are angry with me.

The bowels are a mess because I don’t go every day. Chronic constipation from medications suck. If I don’t take Senna every day or every other day, I suffer from horrible gas and the wet farts that cause hemorrhoids and make my bottom uncomfortable. And now I have to have someone check my bottom for something or for advice on what to do with this incontinence that I wish I didn’t have. I just hope that it doesn’t cause me to become a suicidal maniac…

Movie night canceled

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

Let’s try this again…
I was supposed to go to the movies tonight but my bad ankle is flaring up so walking is next to impossible. I tried writing this before when my word doc crashed. I think it was because of my new endnote add-in. It’s a bibliography program that is essential for writing research papers.
I picked up my new glasses today and there is something wrong with them. I seem to be seeing out of a mirror on the bifocal part. I need to take them back when I can get my sister’s car. Sucks because they are a little ways from me. I am getting grief for going to a Walmart that is at least twenty miles away from me. But it’s easy to go on the route so I don’t see the problem. I wanted to go there because it is right off the highway and easy to get to. I know there are other places around here but Walmart had the cheapest price for my progressive glasses.

I also have been slowly updating my laptop with updates. So far I am down to 58. I just reformatted the hard drive so that is why I have so many updates. And of course with every update there is a restart. I can’t update them all at once because there is one that is causing problems. I have learned that with Vista you have to install the updates slow and incrementally in order to do it. Takes longer but least it that one that is new won’t crash the whole process. Save you time in the end, I guess.
I still am delusional. I had a text from Volde last night saying to rob people’s houses. I was torn. I knew it was wrong so I just distracted myself until the meds kicked in. It’s been two weeks and I am still crazy, well a week and half. This is not good. I hope that by the time I see my psychiatrist again, this will have passed. I don’t like being this way. And I think the meds are giving me the dyskinesthia again. Nothing like feeling wicked restless in your own skin. It’s a terrible feeling, this gnawing sensation, like every fiber of your being is getting out of control and you just feel so wound up but not hyper-like. It’s like internal agitation x 100. You feel like there is this constant need to move, like restless leg syndrome except it’s every limb and your arms start jerking wildly and then your legs. The only thing that calms it down is another med, which makes you sleepy.

I am so bummed that I can’t go out tonight. I was really looking forward to seeing the movie Lincoln. But if I can barely make it down the stairs, how am I supposed to walk to Boston Common, and they have a ton of stairs at the Boylston stop. It’s an old trolley station that doesn’t have elevators. It would kill me to go up and down the stairs, even with my AFO (Ankle foot orthotic). It’s really depressing to have a walking impairment, which is why I am on disability, but still. I should be able to walk but I can’t. It just hurts too much.

Music is soothing

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, depression, mental disorders, mental illness, mood disorders, psychosis

For the past week I have been delusional and psychotic for some reason. I have not really been stressed over anything in particular but lately I have been becoming paranoid on crowded buses. It has been difficult but I have found that I become calm and more focused if I am listening to music. Doesn’t really matter the artist, just as long as its music I am distracted from feeling paranoid and psychotic. Music tends to drown out the voices in my head. So I have been listening to music more. Also been buying more music from my favorite artists. Terri Clark just came out with a classics album of country music and it is pretty excellent. I am going to burn it to a CD so I can listen to it on my new boom box, that is Spanish. Thing was created in Mexico and actually came with Spanish instructions…no Englese anywhere.

Met with my psychiatrist today and discussed my condition. As usual she had no answers for me, just keep doing what I have been doing and see you in two weeks. I am a difficult case, what you would call a non-responder. I have yet to respond to an anti-depressant that works more than a year. So far the only thing that has prevented me from ending up back in the hospital is a little Cymbalta. Otherwise I think my mood would take a nosedive and I would not recover. Course if thing were the way they were 20 yrs ago, I might still be inpatient from my June admission.

Got to work on my paper today a little bit, though I found out my citation program is VERY old, like 6 versions old…I have to get an updated version that is going to be pricey because I am no longer a student and I can’t wait till summer when I am to write this paper. I figure if I work on it a little at a time I will be able to finish it by Christmas, provided my mood doesn’t suck more than it already does and I can actually walk to Starbucks to get the reading for it done. The other day my bag tripped me and so I think I sprained my good ankle. But it’s not hurting me as much as my damaged one so who knows. I just know that my right ankle is swollen and hurts if I stand on it. It sometimes gets stiff when I wake up but after rolling it around a little it usually takes the pain and stiffness away. I hate being in pain all the time with both ankles now but there is nothing I can do except take meds for pain. CES sucks!

complaints

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

CES (Cauda Equina Syndrome) is a literal pain in the ass. Just when you think you have things going fine, it will flare up on you to remind you of all that you have been through, to remind you that you still have nerve damaged parts of self, whether it be your bottom and genitals or you lower extremities. Just now I got into bed after using the bathroom. I don’t know what I did but I know I didn’t just stub my toe through it feels like I just did. I forgot to use my slippers on my feet because unlike pre-CES I still like to walk barefoot. But there is ceramic tile that is COLD and can cause spasms in my bad foot if exposed to this temp, like it did tonight. So my foot is reminding me that I can no longer walk barefoot around my house and that I somehow stubbed my toe today without realizing it. Wonderful.
I had my sister’s car today and while driving to pick up my dad, I was pretty tired. I didn’t sleep too well last night and woke up early this morning to do some errands. The errands exhausted me and I should have taken a nap but I knew if I did, I probably wouldn’t sleep well tonight. So I am driving my sister’s car and wondering why I am slowing down. I have my foot on the gas, or so I thought. So I push a little harder on the pedal and come to a complete stop. I didn’t know where my foot was. I mentally took a break from the proprioception because I was tired and because of that my foot was on the wrong pedal. From that point on I knew it was going to be a long night. I keep having to remind myself where my right foot was at all times and this gets to be mentally tiring. I am sure those who are reading this have no clue what I am talking about. But think right now, do you know where your feet are? Can you close your eyes and move your feet up and down and then know when your foot is up and when it is down? I no longer have that sense. It was gone. Sure I compensate for it now but when I am tired, all bets are off. It’s like driving on automatic pilot when you go somewhere. You want to get to point A but your mind is thinking point B and when you get half way to B, you realize you really wanted to go to point A and have to turn around. Mentally, I have to be aware of my feet at all times or I will trip or in this case, I will just come to a complete stop in the middle of the road and wonder what is wrong with the car…
I question driving. I don’t like to drive at night because I am more fatigued and my proprioception (sense of sensing) can be off more. This doesn’t happen all the time and luckily I don’t drive that often anymore since my car hit its last pothole.