Tag: cauda equina syndrome

berserk foot, no sleep

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, CRPS, depression, mood disorders

Berserk foot no sleep

(pic is of Mass. General Hospital taken in 1858)
I was lying down all propped up on my pillows, lying on my back all comfy. I was ready to snooze but my damn fucking foot went berserk and my pain spiked to a 13. I am still hurting. I just took my pain meds so I am giving it a little more time before I take another strong pain pill. It is so hot in my room and I am sure my chocolate has melted. I have morsels in my room. It is dark chocolate, my favorite kind.

I am hungry but I can’t stand on my foot right now. That would be murder. I wish I had a protein bar or something like that in my room that isn’t too crumbly. I don’t want crumbs on my bed. I really can’t wait for the temps to be in the 60’s without the damn humidity. I really hate the heat.

I had put a sock on my foot as the ceiling fan air was bothering it. Now the sock is bothering me. I can’t fricken win. I am so tired and I know I am going to feel like shit later today. I probably am not going to get new glasses as I will be so tired. It’s almost 3 am. I hate that hour as it then becomes a guessing game as to when I will fall asleep. I hope my mother doesn’t want to wear her socks tomorrow. I would hate to only get 2 or 3 hours of sleep. I put on the white noise machine. It is making me so sleepy but pain is keeping me up. I hate nights like this.

I met a few chronic pain people on twitter yesterday. I was chatting with one of them. I told her I had cauda equina syndrome and she was joking about how a horse stomped on my foot, causing me my pain. Her autocorrect did something to the spelling so she had to explain it as the tweets didn’t make sense. I noticed tonight that my left foot is getting smaller than my right, when it isn’t swollen. I am losing muscle, which isn’t good and probably what is causing me pain. I don’t know if it is the CRPS or nerve damage. Thing is I am using my foot/ankle so I don’t know why my muscles are wasting. So damn frustrating. I think I need to see the new neuro to see what he thinks. I hope I don’t have to go to PT to try and fix it. It will be painful, more than what it is now.

I think I will use the diclofenac gel on the top of my foot. Some times it works to lower my pain. Not all of it but just enough so I can bear it. I sometimes will use lidocaine but I think the diclofenac will work better as it might lower the swelling. I really don’t know if it will help unless I try. Maybe then my meds will have kicked in and I can go to sleep.

some good news, some pain, and other things

by Midnight Demon, posted in baseball, Bipolar Disorder, blogging, cauda equina syndrome, chronic physical pain, CRPS, depression, mood disorders

Some good news, some pain, and other things

I woke up again around 3 am to pee but was able to get back to sleep. I honestly have no idea how I didn’t end up in the floor of my bathroom as I was catching myself going back to sleep while on the can. My med alarm went off at 0715 which I just changed to 0850. I took my meds and then dozed off, waiting for my mother to call to put her socks on. The call never came and I lightly slept. When I woke up at noon, I was totally disoriented to what the hell day it was. It was raining pretty good and the wind was splattering the rain against my window, which at times was startling me.

I went downstairs and found the stove dismantled. My mother was cleaning it. Guess making burritos or tea for that matter, wasn’t happening. I was kind of dizzy but wanted some food. I heated up the pancakes I made yesterday. They were okay for day old pancakes. I didn’t drink anything with it because I was too tired to get something to drink. I chugged some powerade when I went back to my room. I also took pain meds. I must have been on my bed for about an hour or so when the atrophied part of my ankle just went nuts. I hurt so bad, I cried. I kept thinking about killing myself. I just can’t go on like this. I wrote a post on Facebook about how animals are treated more humanely than humans.

I took some pain meds and the pain settled down. I wanted some lunch so made a pizza. I finally found the right temperature to make it crispy. I sort of forgot about it when the timer went off because my mother was busy with the stove and wanted me to put the things I bought her on the pilots. They are a removeable thing that makes cleaning up easier. I checked on my pizza and it was almost burnt so I got it just in time.

My mother was making chicken for dinner and I wanted to make the red potatoes I bought. I washed them and cut them up, ready for my mother to make them when she was making dinner. I then went back upstairs. I rested for a bit. I was suddenly drained. I felt like I had the flu but not really. I couldn’t believe how wiped I was. I wanted to sleep but knew my mother would call me soon as I got to sleep saying that supper was ready. It takes me at least 45 minutes to get to sleep. I was on my phone when a FB message came from someone I wasn’t friends with. The message was from a teacher asking if I was the author of Darkness Always Wins. A student of hers wanted to use one of my stories for prose. She was asking whether the work was fiction or not. I told her it wasn’t as it was based on my experiences of mental illness. She thanked me and said my work was touching. I was so flattered that a student in Texas read my book and wanted to expand on it. I have no idea if the student was high school or college level. I guess maybe high school. I didn’t ask as I was just happy someone liked my work. I haven’t sold many books but some of the writing is from my blogs.

My mother told me I had to clean up after dinner. Fuck. I was really dizzy and needed a cup of tea. I made a cup and my mother wanted coffee so I made her a cup as well. When I was done with my tea, I washed the dishes. Normally I don’t use the dishwasher but today I did as I didn’t feel like washing. That is what it is there for, right? I loaded it and then just washed the pans. I even put the utensils in the washer. HA, it was an easy clean up.

The baseball game for today was cancelled due to rain. There isn’t a game until tomorrow late night as they are on the west coast. I hate west coast games. Game time isn’t until 10 pm. I need to sleep so I probably won’t be listening if I drift off before then. We will be playing the Angels and our first game is with their new ace pitcher Ohtani. I don’t know where he is from but the static about him is fierce. I don’t remember who we have pitching tomorrow. I want to say Price but I could be wrong.

I think my experiment of splitting my meds is over. I can’t handle the dizziness anymore. So it will be back to “eating a meal”. I just wish my meds didn’t make me so bloated after taking them. It is like eating a meal after taking the 12 or so pills. I also need to vamp up my fiber tomorrow. It has been more than a few days since I had a bowel movement. I know it is partially my fault because I got things loose and then stopped the senna for a night. Now I can’t go at all. I had two doses of fiber yesterday and still nothing today. I would take the fiber tonight but one time it started to work at like midnight and then I was going until 2 in the morning. Not a good idea. Thank you CES for causing my bowels to become so unpredictable and to keep going. I hate when this happens. I won’t go for days and then when I do, I can’t stop. Make up your fricken mind, bowels!

bus hopping

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

Bus hopping

I woke up around 0840 with my bladder close to bursting. I quickly took my meds and “ran” to the bathroom. I went back to my room to sleep for about an hour or so. I didn’t drink anything other than the sip or two of Powerade I had with my meds. My bladder was close to bursting again and it hurt so bad after I emptied it. I was like WTF. I know between my meds and stupid nerve injury, my bladder is fucked but fairly functional. I was so annoyed. I wanted to make breakfast burritos but was getting antsy. I was hungry so I had the one that was in the freezer with the picante sauce. I then took the longer way to the square, which required two buses. I went to Starbucks and had my espresso and wrote a little in my journal. It was fricken cold today but again I was wearing a heavy sweatshirt so I was roasting. I couldn’t write anymore so decided to use the bathroom (bladder was full yet again!) and then leave to go into town.

Caught the train and picked up my scripts. The “storm” is now slated for the evening/night. I could have rested today but whatever. I came back to the Square and just missed the bus so I caught a bus to the other bus location to the bus home. For what should have taken me 2 hours, took me three because I had to catch four buses. I was freezing and by the time I reached my house, my ankle was talking to me. I really needed some pain meds. I wore sweatpants that I swear just make you sweat. No breathable material.

I went up to my room and changed then got under the covers. I played on my phone until dinner was almost ready. My mother was making a turkey tenderloin. It was okay. I would have like breadcrumbs over BBQ sauce. My ankle was screaming by the end of the meal. I wanted to go back to my room but my fricken mother told me to put the veggies away as her back was hurting. Pissed me the fuck off.

Then I find out the “storm” is only going to be about six fricken inches at the most, which is NOTHING! And now it looks definitely like evening/night so I wasted a day, hurting my fricken ankle for an errand I could have done tomorrow. I am so pissed. The way this “storm” is moving, it probably will go out to sea by tomorrow and we won’t get jack. Fricken weather people just love to hype shit up!! I am so fricken sick of this. I heard one weatherman say last storm that it was going to be heavy snow turning to snow! What the hell does that even mean??!! Isn’t SNOW SNOW???? Unbelievable!

I need Pearl Jam but I got a fricken migraine so country music it is. I don’t know why every fricken time I turn on the radio app, I listen to commercials. EVERY SINGLE TIME! My sister called to tell me I need to make sure my niece is out of the house by 750. Yuck. I need to get her up at 730. I set my alarm after the call so I wouldn’t forget. I guess I will have an early start to making my burritos tomorrow. I am going to make them with two cheeses, cheddar and American. I should buy Monterey Jack as that is creamier than cheddar. Also melts better. Think I will put it on my growing grocery list. I think I am up to $175 in groceries, but a few items are meat so that is why it is so expensive. I want to get ribs again and some hot dogs. I found out they have a 16 count of my favorite brand that is a few dollars more than an 8 count. Score. I am also getting some eggs because I know we will be out by then, even though I just bought three dozen. I need at least a half dozen to make my burritos. I think that will be at least 3-4 burritos. They kept nice in the freezer and warmed up good, too, for my first trial. So it is worth it to make it in batches.

Pity Party

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders, suicide, suicide attempt

Pity Party

I rarely have pity parties. But tonight, something embarrassing happened to me that has been happening for a while and it just hit the wrong nerve. It depressed me because despite recovering from cauda equina syndrome (CES), not once but twice, I was ultimately disabled because of CRPS and chronic pain. Whether CES had a hand in it, I don’t know. It is doubtful as my last surgery was four years before my injury, a sprained ankle that was caused by intense spasms of my foot and ankle. That surgery was higher up the spine than my first surgery so I am not sure it affected my ankle and foot. There are a lot of what ifs, and I was pondering them today. Then the embarrassing incident happened and it hit me in the gut.

I can’t do much over what I have been dealt. I try to move on as best I can despite horrible pain. I am grateful my hands and upper extremities are not affected by pain. I don’t know what I would do if I couldn’t write anymore. I know there are speech to text things but I like the feel of pen on paper or the keys of the keyboard. I have my outlet with my blog to talk about how crappy the pain is and how it brings on my suicidality.

I was talking to my voices today, as I often do. We were discussing the use of testosterone and the effects of what they would do to me. That is if I don’t kill myself when I plan on it, which is soon. It all depends on how next week goes. I am nervous about it. I have even thought about assisted suicide, which may mean leaving the state and going to Oregon where it is legal there. It might take me a few months to save up for it, but what the hell. I can’t seem to get it right on my own. If a doc can prescribe me something to end it, that will help me. I don’t want to be in this level of pain or worse as I get older. It’s bad enough that just making my bed hurts. Making breakfast should not cause pain and I’m not talking something fancy, just making scrambled eggs and toast is a chore. I wanted to go to Starbucks today but my back was too painful because of the shitty weather, which is going to continue until tomorrow afternoon/evening. I’ll probably be in pain the rest of the week, more than my usual pain.

Right now my foot feels like it is being crushed. I’ve had to take my strong pain pill to quiet it down. That was an hour ago and I am still hurting. I am so frustrated that I have to wait for meds to work. Sometimes it’s 45 minutes. Others, up to two hours. I play with the Neurontin dose because I don’t want to be foggy the next day. I’ll take anywhere from 600 mg to 1200 mg a night. Some nights I don’t need it. It all depends. But when I flare, all the guns need firing. Pain today has been mostly in my foot. But my ankle hurt briefly. It piggybacks going up and down, from foot to ankle and back again. Sometimes it is the same pain, sometimes it’s a different pain in the different area of my foot or ankle. I never know what kind of pain I will get. The bone pain is the worse because that is harder to treat. It can be my malleolus or the metatarsals. And is always severe, like can’t move at all severe. I wish there was just one pill I could take for all of the CRPS pain. But there isn’t. And then there is an MGH resident that says opioids don’t work on pain at all. I like him to have CRPS. The meds might not take away my pain 100% but it brings it to a bearable level and that is all I need. Lately my pain has been rampant, a 7 or higher. Used to be a 6, now a 7 is my new “normal”. Before then, it was a 3. That was at least two years ago, maybe? What happens when my pain is a 10 every day? I probably won’t be alive to know. I hope so, anyway.