Tag Archives: CES

pissed kind of day

Pissed kind of day

I woke up around 0500 in pain. I took my breakthrough pain because it was too early for my regular one. I stayed up for a little bit and then went back to sleep for about an hour and half when my mother woke me up to put on her compression socks. I was not happy. I put them on and then decided to go back to sleep. I set the alarm so I could make breakfast before leaving for PT. I wanted to make pancakes. Alarm went off and I didn’t want to get up. The alarm kept announcing the time. I was lying on my right side and didn’t want to roll over to shut it up. Eventually I did because it was annoying me. I laid on my back and after a bit changed to my right side so it wouldn’t hurt. My ankle was being a brat.

I went downstairs and saw that the bag that I had left on the table by the other set of stairs was gone and there was mail there. I asked my mother where she put the bag. I must have said it three times and she didn’t understand what I was saying so I starting yelling. She yelled back when she heard what I was saying. I got the bag and did all I could from slamming the door to the porch where she put it. I then got an umbrella because my back was telling me it was going to rain.

I went to the kitchen and made breakfast and coffee as I needed it very badly. I just hoped it wouldn’t make me sleepy. The egg looked really good so I took a pic and posted it. I usually don’t post my breakfast, just other stuff that I make like desserts or a kind of meal that I got a recipe for. I ate it while my coffee was brewing. I tried the new creamer. The fucking protective foil wouldn’t come off. I was getting so annoyed. Finally it gave way and I didn’t spill the container in the process. It wasn’t as sweet as the other creamer I used but it was okay. It did its job.

I grabbed the lid for the mug and then went upstairs to get dressed. My bitchy mother wanted me to mail something and go to the bank for her. Okay. I left and as I was walking to the bus stop, my lower back on the left side acted up. I had to take a break a few times to settle it down. I stopped where there was shade to put the Bluetooth on my phone and listen to my headphones. Then continued to the bus stop. The bus came and I rode to PT.

I had emailed my PT about how the home exercises were going. She said we’ll change things up a bit. She gave me three new exercises. The posture exercise was out and the knees bent clamshell was, too. She went over some weighted exercises to do with my upper arms and back to help my core. We had time after it so she decided to massage my hip muscle. We were talking and I asked her if my current problem was due to the nerve injury, cauda equina syndrome. She said it was most likely due to over compensating for the weakness after rehabbing because I walk fairly well for someone with having CES twice. She said she is very surprised I am able to walk as much as I do given my conditions. I said thanks. A few people in my CRPS support group have also said so. I guess between the high pain tolerance and not being able to sit still, I push myself to do things. I did that for three years before I couldn’t do it anymore. I knew once I was in the AFO at work I couldn’t work two jobs anymore. Even managing one job was hard. I guess if I could have cut my hours to maybe four a day it would have kept me working but I couldn’t financially do that. My health insurance would have been ridiculous and my mother would have had a fit for not providing enough for the mortgage.

I was feeling tired after PT. The bus was always a guessing game because I had no idea what time which bus was going to come. And there were no benches to sit so I had to stand while waiting. I think I waited 15-20 minutes for a bus to a station. When I got there, the bus was there for the one home. It kind of freaked me out because there was a carriage on blocking the passage on the bus and then people would stand by the entrance blocking anyone that came on. I just freak out when that happens. I don’t know why it gives me so much anxiety but it does.

I got home and then went to the bank before going home. I have done this for my mother a million times. The customer service person asked if I was my mother and I said no. She then went to the back to ask someone a question. She came back and said they would do this this time but next time my mother needs to do it. I asked why as I have done this before without a problem and she said it was because of the withdrawal. I said there was no money exchanged, the money was being transferred from one account to another. She said that was the policy and I got mad because my mother had done this before without problems. I guess it just comes down to who does the transaction.

I walked home and my ankle started acting up. I walked in and I heard my mother talking. Then I heard my aunt and I wish I wasn’t home. I didn’t want anything to do with my lunatic aunt. But my cousin was over with her 4 month old daughter so it wasn’t too bad, until I asked my aunt a question and she gave me the entire history of how my mother entered the country as she was in Italy at the time. UGH. She can never answer a question with a short fricken answer. The baby was even getting fussy. When she finished, I asked my mother what she was doing for supper. She said hot dogs and potatoes. I was like okay. I was hungry but could wait.

I went up to my room to cool down and rest my ankle. It was really angry. I took a breakthrough pill. I was playing on my phone when hunger got the better of me. My sister texted me to check on my niece so I went downstairs. My niece was okay. Then my hip started hurting me where the PT had massaged me. I emailed her to see what to do about it. I made dinner for my mother and I. It was hard getting around the kitchen with my hip hurting.

After dinner I went back up to my room and I swear I feel so exhausted. Like all the energy has been sapped out of me. I don’t think I will be listening to the Sox tonight. My leg is hurting so bad and I feel so depressed about it. I need to go out tomorrow to see my therapist. I hope this pain settles down. I might not do the home exercises tomorrow if my leg is hurting me. I hope a good night’s sleep settles this thing down. I am going to take my night meds early and call it a night.

It’s 72 degrees and I need a heating pad

It’s 72 degrees and I need a heating pad

I had decided to do my PT exercises today. I printed them out after I spent nearly a half hour trying to get the battery contrast settings to “normal”. When I somewhat “fixed” it, I then rebooted and hit F2 quickly to check what the settings were in the bios. Sure enough, they were at 0. Fucking fuck. I put it to 100%, restarted, and then changed the settings I played with. Once that was done, I put the laptop aside. I struggled with the stupid body pillow, which at this point, I want to throw out the goddamn window. But it is helping with sleeping on my side and aligning my hips while I sleep.

I then did the exercises. I was only able to do about three or four outward motion with my left. I knew I was lucky to get that much. I had no problems doing the right. Then I did the others. I tried the one standing and adjusting my posture. My back DID NOT LIKE IT! I am still hurting. My spine is aching so bad. I took some advil and I am sure the constipation I am feeling isn’t helping. I woke up late so didn’t take Miralax. I just been taking fiber pills. Taking three things for the movement of bowels is hard. It’s worse when neither works. I went a little bit last night. It was better than nothing. I was hoping to get on top of it today but sleep interfered. I woke up at 8 to take my morning meds. I should have stayed up but didn’t and I regret that decision.

So now I have a heating pad on my back because it is sore with the AC on. Hope it works other than making me hot. I finished Dostoevsky’s Brother’s Karamazov today. Figures the last chapter had nothing to do with the plot!! I am just grateful it wasn’t long. I wrote a review on Goodreads. I plan on starting Dr. Stacey Freedenthal’s “Helping the Suicidal Person”. It is supposed to be good. Maybe it will help me be a little more hopeful and get me out of this funk. I am almost 90% sure I will end my life soon, though I am playing with the dates, again.

Tomorrow will be really hot. Twenty degrees hotter than today, which also does not help my back pain. It is also going to be yucky humid. I heard one school system has closed due to the extreme heat. That isn’t good.

Sox won today. I went to update the standings in my Twitter profile. I checked the MLB standings as I couldn’t remember if I did it or not yesterday. Seems I missed the whole Seattle series. OOPS. I corrected it. I made mention of wins or losses but never changed my profile to reflect it. Oh well. It is correct now.

Today my sister said she wasn’t having a BBQ but just throwing things on the grill. HAHAHA I got my brother in law a gift for Father’s day. He liked it. I had bought it for myself but it wasn’t what I expected. I am still looking for a keychain nail clipper with a file. I had one on my last set of keys but I lost them. I still haven’t been able to find them. I know I had them because I walked in the house. What I did after that point is a mystery. I was in a lot of pain and just want to rest so things were a blur. I have been careful where I set my keys down now. I have to remember to take them as they are in the kitchen. I don’t want to leave the house without them.

This morning, my cousin’s mother in law sent me a couple of pictures of my father set in a Jesus frame. My heart shattered in a million pieces. She sent them through FB messenger. For some reason, messenger downloads the images to my phone and I quickly deleted them. I didn’t want to see them. It hurt too much. I know she didn’t mean me no harm but it was unexpected. Sometimes as I flick through my phone and see the folder that I have of my father just gets me in ways. Even in death he is torturing me.

jump then fall

Jump then fall

Honestly had no idea what to name today’s blog and I am listening to Taylor Swift’s song, Jump then Fall so just chose that as a title.

I read one LONG chapter of Brother’s Karamazov. It was typical Dostoevsky. The chapter had nothing to do with the story. It was about one of the character’s interacting with a hallucination due to his illness. I was just reading to get through it, so I don’t even remember what it was exactly about. I made myself a new goal for the week. That if I finish this book, I will then read the Harry Potter series, again. I can’t help it. I follow a couple of Harry Potter Twitter accounts and they always show quotes from the books/movies and I want to relive it again. I love it so much!

I actually bought another book on the recommendation of Wil Wheaton called All the Birds in The Sky. He said it was good so I will read that along with Harry, if I get that far. I have a lot of things to do this week and my fucking ankle flared up today. I was at my sister’s apartment getting ice. I turned around and almost lost my balance. I didn’t see where my bad foot landed. I went to pick it up to walk to my apartment and it hit the drill that was on the floor. OUCH!!! Instant flare. Fucker. Pain is currently a 12, which is better than it was four hours ago when it happened. I just took a strong pain pills and some dark chocolate to help me feel better. I was talking to my support group friends and told them the chocolate is my “extra strong pain pills.” They wanted to start a post about sweets but were reluctant so I did it. I am not shy, LOL.

My mother said she was going to make spaghetti with my gravy. I was like score! I went downstairs to my sister’s to empty my recycle bin. It was close to overflowing so needed to be emptied. The dinner was ready when I came back upstairs. It wasn’t spaghetti. It was shells. I said so to my mother and she was like, we haven’t had them in a while. UGH. I want spaghetti, not shells!! I ate it anyway. I finished off the last of the meatballs. My mother made the box of the pasta. She can eat it all week.

I filled my med box for the week. I need to take my meds soon. Last night I realized I didn’t take my meds Friday night. I was just so upset over the whole pain doc and pain meds that I just forgot. I thought I did take them but they were still in the box when I took my meds last night. No wonder I had trouble sleeping that night. But my writing bug has been activated. I have been wanting to write all day but kept getting distracted by the internet. Plus the ball game was on so it just didn’t happen. I want to write some more about suicide and getting help, in general. It is not easy seeking help and if you have a past like mine, it is extremely difficult to find another therapist that will take you on. But it is on the mental health professional, not you! If you have a problem with alcohol, it is best to find an addictions counselor rather than a general counselor or therapist. Support groups are invaluable. There are plenty online or even on Facebook. Depends on what you are looking for and how private you want them. Going to a group therapy takes some work. But the peer support work better. People that have alcoholic spouses or parents also can get groups for them that are free. Just need to put a little effort into finding something that works for you. There is a good likelihood that the first person you meet isn’t going to work out for you. It’s like any other relationship. Takes commitment and work. If they don’t work out after 2 or 3 sessions, find someone else or another group. I went through at least three CRPS groups before I found the one I am in. What a difference! The people are friendly and supportive to all members. I also run a support group for CES on Facebook and it is a good group. There are some people that come in with their own agenda, looking for money for themselves or their “cause”. You are going to find that anywhere though. I try not to let those people in because that is no really supportive nor do other members have the money to donate or feel pressure to donate because someone asks. Most are on a fixed budget like me so there might not be extra funds after all bills and meds are paid for the month. I’m fortunate to live with my mother to pay some bills that I couldn’t manage if I lived on my own.

Colon blow and other Cauda Equina Syndrome “fun” things

Colon blow and other Cauda Equina Syndrome “fun” things

I didn’t write my blog yesterday. I only got a few hours sleep due to pain and worrying that I would sleep through my alarm. I went to my psych appointment and she put me on a new antidepressant that is out. I came home and had a severe flare. My pain was through the roof. I was supposed to go to the ball game but it wasn’t happening. After my mother made dinner, I took about an hour and half nap when my phone’s med alarm went off. I took my night meds and got so sick. I haven’t moved my bowels all week so been feeling ill and I think the new med just made me nauseous. I thought I was going to hurl. I took my Zofran and laid still. I also took some Mylanta because I had gas really bad. When I didn’t feel like puking anymore, I took some fiber to help my bowels move along but a few hours later, nothing happened.

I decided to try some Miralax to help move things. I was hurting so bad and I swear my stool was moving into my small intestine rather than move along to my colon. I was still passing gas but nothing else. I went to Walgreens and bought some and a Gatorade to take it with. Having suffered from Cauda Equina Syndrome (CES), getting constipated is a HUGE thing. There is a varied range of people’s degree of injury to their bowel nerves. Some don’t feel themselves go so become incontinent and being constipate helps to prevent accidents. Some have a designated shit day where they take laxatives and spend the day on the can to relieve themselves. Taking medication for pain can be constipating. I have no feeling for soft or loose stool so can pass them with gas if I am not mindful of it. Never trust a fart is a common saying among those with CES.

I usually have hard stool and can go with senna. Lately, because of my flares and needing more pain meds, it hasn’t been working. Usually fiber helps me move along and I try not to have plans the following day so I can go to the bathroom in the privacy of my own bathroom. I hate using a public restroom when out because I don’t have the mobility to reach my behind like I used to due to my back surgeries. When the fiber and senna do not work, I take Miralax hence why I went to Walgreens today. I have been having a ton of flatulence which I cannot trust. I was able to have a few movements after taking the Miralax but now I am having what is known as colon blow where all you do is go to the bathroom. Since I can’t trust a fart, every time I get the sensation of urges (I can’t tell if it is a stool or gas urge), I run to the bathroom. For the past hour, I just have been shitting little turds, which is annoying me as the stool is messy. My bottom is so irritated and I have to use the incontinence spray that you don’t have to rinse to soothe it.

The most undignified thing is, because I can’t trust a fart and I have a lot of gas, I am now wearing a diaper to prevent my underwear from being soiled. I already had one accident today that required a shower. With the comfort of the diaper, I can let loose and if some stool comes out, I don’t have to freak out and be constantly changing my underwear. I have taken some stomach stuff for gas so I hope it helps. I don’t want to take Imodium because I don’t have loose stool even though I know it would help the gas part.

Another lovely “perk” is nerve pain after moving hard stools. This rectal pain can drive people who have never been suicidal to become suicidal. Nothing is worse than a pain in the ass that no pain meds can touch. Sometimes the pain can last a few minutes or hours or days. It sucks. No doctor knows why, even the colon experts.

The worst part of this day from hell, is I have been going up and down the stairs all day as the bathroom is downstairs from my bedroom. I hope it doesn’t cause another flare. Yesterday’s flare is still giving me nightmares. My ankle has CRPS (complex regional pain syndrome). It doesn’t like movement. I am sure I will flare later tonight, despite taking a nap. Rest doesn’t always help my pain like some pain conditions. I hate the unpredictability that CRPS brings. I wish there was a way to control it but there isn’t. I long for the days when my pain was driven by activities during the day. Now, it doesn’t matter. I can be at home all day and I will hurt. I can go out a few hours to have a cup of coffee and write for a bit only to hurt later in the night. It is awful. I hate it. It has taken away all the things I love. I feel beaten. And then I will have days like today where I am crapping my pants. It’s too much. I just always hope that tomorrow will be a little less painful because that is all I can do.

Murphy’s Law

Murphy’s law

I had set my med alarm for my pain meds last night so I wouldn’t miss a dose. I woke up around 6, took my meds, and then went back to sleep. I woke up some time after 9 and decided to shower. By the time I was done, it was too late to catch the bus. I thought about taking a cab and I should have, but I didn’t want to spend $15 when it wouldn’t cost me anything for the bus. I waited until it was time to get dressed and leave. I grabbed my insulated cup and left the house.

I waited and waited for the bus. I checked the schedule to see if there were any delays and there wasn’t. I also checked to see if I had the schedule wrong due to a change. Nope. The bus just never showed up. I was fuming. I caught the next bus, which meant I had to catch another bus to the square. While I was waiting, my cup fell out of my bag and broke. I was so damn sad. I loved this cup! I had been using it all year. I saved the straw as it was new. I would recycle the plastic when I got to Starbucks. But because I was getting there until an hour later, I decided to go to Dunks for my favorite sandwich and then go to Starbucks. Fuck the chains. I didn’t care. I ordered my espresso and I thought about buying another cup but I found my trenta cup so hope that doesn’t break.

After I ate and had some caffeine, I was a little less hangry. I was kicking myself for not getting a cab or uber. I went to my barber for my haircut and he did a really good job. I paid him double and told him I would be back in two weeks. He said save your money and I said I can’t. LOL I end up using it for food or something stupid. Best to put it in his hands. He said okay. He asked what I was doing the rest of the day and I said I was thinking of getting my new glasses as they just came in. So when he was finished, I went into town. It was a lot cooler than it was yesterday so it was a good day for the walk. But not a good day for my pain levels or having bronchitis. I was wheezing by the time I walked a little ways to the station. I used the inhaler so I could breathe better. I did okay getting to the optical shop but not so great on the way back to the station. I was out of breath again and my groin was hurting me. I think I am using my hip muscles instead of my legs so it’s pulling. Fun.

By the time I got back to the Square, I had to wait 40 minutes or more for the next bus. Screw that, I called a cab. I didn’t care and my legs didn’t either. I was hurting and forgot to put my pain meds in my shorts. I missed my noon time dose. The cab came and I was grateful. My niece tried to scared me when I got to the door but I was so concentrated on things, I didn’t really notice. I got her though as I went to her house to drop off the mail. HAHA payback.
My mother had a low blood sugar and asked me to make dinner for her. I said okay. I wasn’t hungry yet as I was just trying to recover from being out. I decided when I came home, I was taking a cab to the station tomorrow as I need to see my psychiatrist. I downloaded the app and registered. I then booked a cab for the morning. I made my mother something to eat and then my sister called asking to cook something for my niece. I had leftover pulled pork then made mac and cheese for my niece. I also had some. I was kind of wheezing while I was cooking but I had just used the inhaler.

After I ate, I cleaned up and then went up two flights of stairs to my room. My lungs protested big time. I was so short of breath and wheezing. I was also coughing a lot so took the cough suppressant. I am now so exhausted after I recovered and breathing normally. My ankle flared up within minutes of sitting on my bed. I was thinking of listening to the game, but I am too fricken tired. I am going to take my meds and call it a night. If my brother in law comes to put in my AC and screen, that would be good. Going to be humid all weekend and I know I will be uncomfortable.

I finally had a bowel movement today. I took some fiber last night and again when I got home. I knew I was going to go as I was getting really bad cramps. Only problem was I didn’t poop enough so I am still feeling uncomfortable. My friend told me to drink a lot of water but that has problems of its own. I already changed underwear twice today and don’t want to do it a third time. I have been trying to drink fluids anyways because I have been sweating a lot. I think I am going to wear a diaper tomorrow when I go to the ball game. Sucks but at least I don’t have to worry about wetting my underwear. Nerve injury sucks. That is all for now. Pain has reached a 13 and I need to take my meds before it gets worse.