Tag: cauda equina syndrome

random nothingness

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

I didn’t do anything today but have breakfast. I didn’t have lunch because it was a late breakfast and I am not really hungry.

I had therapy today, on the phone, and my therapist is worried about me losing weight. She hasn’t seen me in months so I doubt that the twenty or so pounds I gained will show up on the phone. I told her I can barely button my jeans and I refuse to go up the next size. I just have to be strict so I had three cookies today. Shows you how committed I am to losing weight. It’s hard not to eat the damn cookies my mother bought. They call my name and I have no will power today because I am hurting. My calves still hurt from either walking up the hill or doing stretches on Monday. I haven’t done that exercise today. I tried the balancing one until my ankle pain exploded and that was the end of that. I did it for about twenty seconds so I say that is an improvement. If I can get to a minute without holding on, that will be a HUGE improvement but I am not holding my breath on that. I don’t like the fact that my foot muscles try and compensate for balancing. I don’t know if that is normal or not. I had to reschedule my PT appointment because of my damn father. I will see him next Tuesday afternoon. I also have to call and reschedule my eye appointment too because my therapist is in the office that day. Bugger. I was banking on her being off that day. Wrong.

I still don’t know what I am going to do about my calf muscles. They hurt and I don’t know if doing nothing is helping or not. I know that my pain level in my ankle hasn’t been affected at all. It still hurts when I do nothing. It is so frustrating being in pain all the time. I still have to go to the pharmacy and pick up my last medication of the month. I don’t know how I am going to finagle that. But I managed to pick it up just a little while ago.

When I got up from the bed, I noticed my vacant spot had a spot on it. Apparently I fucking shit the bed, literally. I am so upset as this hasn’t happened ever to me in my adult life. I feel so ashamed of myself for not noticing it sooner. I had a feeling I went but there was no loose stool when I went to the bathroom. I thought I was ok but this was just watery stuff. I don’t know what I am going to do. I think I am going to have to wear pads. I have been avoiding wearing them because they irritate my skin after a while. I really don’t know what else to do. If I go to the doc, he is just going to refer me to a colorectal surgeon. And I really don’t want a doc poking me there. I am embarrassed more than I can say. This is the second time in a week I have shit myself. I just am not going to fart anymore unless I am on a toilet. Wonder how that is going to last. I really hate myself right now for letting this happen. I thought I felt something my last fart but I wasn’t sure. I feel like an idiot now.

TS, PT, and anxiety

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

Taylor Swift day

At midnight, Taylor Swift released her fifth album, 1989. Sadly, I don’t have funds to purchase this album yet so I have been in a funk all day. I have been watching her on TV hoping she would sing a song but it’s mostly talking that she is doing, not that I mind. I love hearing about her life and how she creates her songs. She is very personable and she gives back to her fans which is a unique quality of hers. How many artists invite their fans to their living room?? None that I know of, other than Taylor. I have to wait a month to get the CD. I hope I can wait that long.

I went to physical therapy today, against my better judgment. I am hurting but not as bad as I was expecting. I probably will hurt more later when I want to go to sleep for the night. Getting there was a challenge as there was a steep hill to walk up. I was out of breath and wheezing by the time I reached the top. And I was an hour early for my appointment. There was no way I could have prevented that as I had to take two buses to get there and I wasn’t sure where I had to get off on the second bus I had to take. But now I know. I don’t know if I am going to continue with it. The guy didn’t seem to interested in caring for me. And he gave me the same damn home exercises that I always have been using the past 13 fucking years. I feel like instead of stepping ahead, I went back. I am so disappointed. And what is worse, I know that these exercises aren’t going to do anything. If they worked, I would be fine. He also thinks that I don’t have foot drop and don’t need the AFO. Idiot doesn’t know that I turn my foot when my foot gets fatigued. He had me do exercises today that really taxed me. I had to stop after a few minutes of doing them because my foot exploded in pain. He didn’t do anything more than stretch my calves and tax my foot. The guy didn’t know how to use a reflex hammer. He tried testing my knee reflexes and he kept hitting my knee cap instead of the spot below it. Moron. I still have no ankle reflexes, yay me! My sensation was off, as I knew it would be. I really don’t think that after all this time, I am going to get it back. I really think that going to physical therapy is going to be a huge waste of time if I continue to get the same exercises I have been doing for years. But we’ll see. I see the guy next week and we’ll see if things change at all. In the meantime, I have to get this pain under control.

When I came home from the appointment, I felt winded. I didn’t do any inclines at all on the way home. Everything was level while walking home. But by the time I climbed the first flight of stairs, I felt like I ran up the stairs. I was wicked out of breath and that usually never happens unless I happen to hold my breath while going up. I don’t know why I have a habit of doing that. But this time I didn’t and I was coughing and wheezing. After a few minutes of rest, the wheezing stopped but the feeling of being short of breath didn’t go away. After I climbed the second flight of stairs to my room, I realized it was anxiety so I took some Ativan. Now the feeling is gone and I am breathing normal and not feeling out of breath or short of breath. I don’t know what brought this on as I really haven’t had anything to cause me anxiety. But I have had a lot of phone calls today that I had to make and that I received. I hope it wasn’t because of the cup of coffee I had this morning. After I drank it, I felt kind of nervous. It really gave me the jitters but it settled down once I got to the bus stop on the way to PT. I thought that it was gone but something set it off. I didn’t have anything caffeinated. I didn’t even have so much as water after I had my coffee. I ate when I came home as I skipped breakfast. I made scrambled eggs with toast and drank juice with it. It’s so weird for me to have anxiety and not know it. I am usually not an anxious person. But I am glad that the feeling went away with Ativan.

I am excited that my boxes of cereal came today along with my pumpkin spice and two books. I really don’t know why I bought the books as I have started numerous ones and have yet to finish one. But one is about graveyards so I thought I would read that starting on Halloween. We’ll see if I finish it.

Football, Pain, and Social Media

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

Tomorrow I have a mess of phone calls to make and I need to get to the physical therapy (PT) appointment in the morning. I am really nervous about getting there and also just in general. I hope the guy is a good guy and not a shmuck. I have never been to this health center before so it will really be a test of my navigation to find the place. I will be going by public transportation and according to the T’s website, it is a block from the bus stop. I just hope it isn’t more than that as I might not be able to make it. I was talking to a friend that used to live in the area and she said there is a hill to go up. I don’t do well on walking uphill. I guess I will find out how steep it is when I get there tomorrow. Got to love Boston and its surrounding areas for being hilly.

Pain wise, I am hurting. I have decided that I won’t take any pain medication unless it become unbearable. I have no choice as my pain pill supply is on its last leg. I cannot refill my script until Tuesday and I have just four pills left. So as much as I really would love to take a pain pill right now, I can’t. This sucks so bad. If my doc would listen to me and actually give me the amount of pills I am taking a day, there wouldn’t be a problem. But he doesn’t so I get screwed.

My mood has been stable despite being in chronic pain the last few days. I haven’t been despondent and in despair. I have been trying to keep myself busy with my game and working on tweeting quotes from the book, “Managing Suicidal Risk” by David Jobes. I was tweeting last night before the OSU game. What a fucking game it was last night. A nail biter till the end. I couldn’t stand the crowd last night as the noise they were making was unreal. Even though the home team was down, they still were cheering as if they were winning. Got to give them credit for that as the team came back only to lose in overtime. It was the first football game I watched all season. In between commercials I switched to the ball game. I don’t know how many times the Giants had the bases loaded and they cashed in. I didn’t see the last few innings. Last I saw they had broken the tie and were winning 7-4. The final score was 11-4 so they obviously score more runs while I was watching the overtime football game. I don’t understand how the overtime game was played as they didn’t have a time clock for the plays and then the team lost on 4th down. They couldn’t punt or score a field goal as they needed a touchdown to win. After the loss of downs, the game was over. I never seen anything like it before. Maybe that is just the way college overtime is played.

I chatted tonight in BPDChat (borderline Personality Disorder) on Twitter. It is amazing to me how many chats I have participated in with Twitter. I really like it because I get to meet interesting people with the same thoughts and understanding for the different topics that I chat in. I like the SPSM chats because they deal with suicide prevention and from there I have met some interesting clinicians that I follow and they follow me. I also get to promote my book the best I can through Twitter via hashtags. I really love Twitter and all that it has done for me. It helps me know there are real people in the world that I can converse with and not be hidden by. I am alone most of the time in my room because of my immobility. I don’t have social meetings with friends anymore and the friends that I did have, I have lost. Most of it is because I don’t have a car anymore so meeting up with them has been difficult. I also don’t socialize with my family on some days because my pain is too great to go down the stairs. So social media (FB and Twitter) has been a great support for me.

Saturday Blog 13

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

Saturday Blog 13

I am wicked sore today after all the poking and prodding the new doc did yesterday. But I persevered and went to Walgreens to pick up my prescription. I am supposed to take it only at night but I am in so much pain that I decided to try it during the day. So far, I notice no difference. I will take it tonight and I hope that with my other meds, I get to sleep. I am not sleepy at all from one dose and taking my pain meds. The new doc recommended that I wear a brace so I have that on, though I am ready to take it off because it is hurting me. I have had it on the last few hours so I need a break from it. It hasn’t been helpful for me. Going down the stairs hurts me more than going up with it on.

I think part of the reason I have not crashed is because I had coffee today. I still feel awake and like I can do anything, least mentally wise. I think I am going to write my therapist a letter when I finish this blog. I don’t know what I am going to write. But I will figure something out.

Last night I was in a rough space. The prognosis for my ankle doesn’t look good. The idea that I have to go back to physical therapy after all this time just makes me cringe. I just hope I don’t have a “god” like therapist. I want someone that is willing to work with me, not against me. I don’t know what they are going to do but we’ll see. I start therapy on Monday. I just hope I can find the place. I also hope that the therapist doesn’t treat me for a back injury like the last therapist did. I went to therapy for an obvious ankle injury not because my back was hurting yet I was given exercises for my back.

Due to this prospect, my mood took a hit. I really felt down because I know there is not really much that can be do for tendonitis other than what I have been doing. But the fact that more tendons are involved means that I am not moving my ankle correctly and I know that it is going to be painful to correct it. My stupid brother in law seems to think that I will need back surgery to correct it. He is a complete idiot when it comes to medical stuff. It really pissed me off when he said this because the damage is already done. I am trying to compensate for what I lost and that is why all my tendons are screwed up. And the thought of being in a hinged AFO forever is daunting. The fact that I have to walk with a mobile device is in itself depressing to me. And the fact that this happened almost 14 years ago kills me. I still blame myself for not getting the care I should have. I should have found someone that had experience in nerve rehab. But I was too busy trying to keep my job and stay sane so who had time for that? I didn’t know I wasn’t walking incorrectly. I was also busy fighting the pain of losing what I had and trying to gain it back. I thought, after several years, I was finally going to be okay. I was working close to full time and things were going okay until I got struck with CES again. Then all that I gained back, was lost, this time forever. But I was wiser this time around. I knew what kind of rehab I wanted to get better. And I seriously thought that after 9 months of intense physical therapy, I was better. I had no idea that I wasn’t. But I was too proud to admit that I wasn’t because I found a script from my neurologist saying to be evaluated for an AFO in 2008. If I had followed through, things might have not been as bad as they are today. And I am kicking myself big time for that. It’s my fault because I have no one else to blame.

OSU game will be on at eight on channel 5, least I hope it will. It said ABC so am hoping that is nationwide. I really would love to watch a college football game today. Nebraska killed Rutgers today, 42-24. But watching the game depends on how much pain I am in. Right now I am at an 8 and I am not doing anything but type up this blog. I have my foot up and it still hurts. I know that if I go down the stairs I will be in pain (I don’t have a TV in my room for several reasons). So right now, the game is up in the air, but I definitely will be watching out for tweets on the score and stuff on Twitter.