Tag: CES

fatigue day

by Midnight Demon, posted in Bipolar Disorder, depression

I finally mailed out my books for my review today. I really wanted to go to Starbucks today but for some reason, I was really tired. I remember reading a fellow blogger’s blog about Chronic Fatigue Syndrome. She wrote that she could walk up a flight of stairs and be totally winded. That was me today. I had walked only a few houses down the street when I realized I left one of the books at home. So I went back to the house. I was already feeling fatigued before leaving the house. I really didn’t want to go out today but I forced myself to. So I came home and walked up two flights of stairs to my room. I was so out of breath by the time I reached the top that I had to sit for a few minutes to catch my breath. And I was panting very heavily. I climb these stairs every day and I don’t know why I was so winded today. It was really odd. I then proceeded down the stairs, going carefully as not to knock the breath out of me again. I walked the block and half to the post office and I was just completely weak at this point. I was standing, being waited on by the postal person, and my legs started shaking. I felt like I couldn’t support myself. It was really bizarre as this has never happened before. And like the blogger, I know that if I go to the docs, they are just going to say that I am out of shape. I am more than overweight, borderline morbid obese so that is what they will say. Lose weight and I won’t have a problem. But just now, I climbed the stairs and had no difficulty. I am not terribly out of breath like I was earlier this afternoon. It is so weird how sometimes I am and other times I am not.

Other than this experience, my day went fairly well. Though I seriously have to start writing again if I want to do a second book. I formatted what I had and it came to 30 pages. Not enough to really even have a book. Thing is, I don’t know what to fucking write. I am not that creative like I was. Just writing the story of the brick wall was torture just to get it to three pages. And then I combined three blogs about my antipsychotic pill to make a few pages. That is all I got. I know there is more in me, I just can’t find it. I am so depressed lately and out of sorts that I just can’t concentrate. I need to be at Starbucks and being around people again. To take me out of my house where I can’t think and all I want to do is sleep.

My mother gave me a look when the groceries were delivered. She thinks she doesn’t buy “food”. She does, but I desperately needed my stuff that she doesn’t buy, like my teas, lemonade, steak, etc. She also doesn’t buy bottled water, which I like. I will drink tap only if I have to, but usually I will mix it with the lemonade or iced tea mix. I am kind of bummed that they were out of stock on hamburger rolls. Now I will have to wait to make my Manwich. I usually make it then eat it over a couple of days. I am the only one that likes it.

My voices are back, full time again. It is weird because I took the abilify last night and you would think they wouldn’t come back, but they did. I still don’t feel like myself, though. It’s hard to explain. I got a buzzing going on in my head and I don’t know if that is good or not. I know that things are slower, my thoughts are slower. I am moving my normal speed and stuff, but I feel retarded. Like when I was walking to the post office today. Every step felt like I was walking in mud. And my breathing reflected the labor. My back acted up while I was putting the groceries away. I couldn’t stand and walk too long. It really sucked. And I was walking at a deliberate pace from the stairwell to the kitchen. Not a far walk but it still cramped up my back. I have been trying to stay hydrated the past few days to see if that helped with my cramping and it hasn’t. I don’t know why I am getting mid-back spasms. I am not doing anything strenuous.

I need to shower sometime before I go to bed tonight. I am sweaty from my labors today and I leaked. Always fun to smell urine and then realize it is you and not someone else. I don’t understand how I can be leaking when I really haven’t been peeing that much. It drives me crazy. Thanks CES for messing up my life!

Something in the Water

by Midnight Demon, posted in bipolar, Bipolar Disorder, chronic physical pain, depression

Something in the Water

I have been obsessed with this song since hearing it on the radio a few times the other day. I wish YouTube had a repeat function because it would save me from hitting play again and again. The choreography in this video is pretty neat as well. I find it to be a very uplifting song.

Went to PT. She did ultrasound on my ankle and then wrapped it in an ace bandage to see if that helped, but not before doing a few stretching/strengthening exercises. One of the exercises I have no idea if I am moving my ankle or not. My proprioception is so off. She noticed that when I did it, my toes began shaking. She said that was because my ankle is weak. Well, duh! Tell me something I don’t friggin know. I asked if that was the reason why the bottom of my foot did the same thing when I did the stand on one foot exercise. She said most likely. Great. I am going to give this run another 4 weeks to see if I have any improvement, even though I feel pretty hopeless about it. I just think that if my ankle was going to get better, I would have seen improvements by now. But then, I really have just been a lump on a log, not doing anything to help my pain except being in inactive. I told her that doing stairs or any activity is going to bring me pain. We’ll see in 4 weeks if I am better. She didn’t bring up aqua therapy and I am not going for it. It’s too bloody cold out to be wet.

I have a new problem that occurred today. I think my buttock is getting weak. I had a sneeze attack today while going up the stairs and by the time I got to my room, I felt like my butt couldn’t hold me up while standing. Sitting, I am fine, though it feels more like I am sitting on a pillow than a group of muscles. It just feels different to me and I am worried that a disc has herniated again. I am not having any of the other red flags of CES, so I am not petrified. I am hoping it is just because I am tired because I did a lot of walking today. After PT I went to Starbucks for my coffee and a bite to eat. I am not in pain but then I don’t know if my butt is numb or not. I can still feel it when I run my hand up and down but I don’t know if the muscles on the inside are getting numb. It always worries me because I know I have a disc that is touching my nerve root. So sneezing is going to bring me some difficulty. I don’t stifle the sneeze because that isn’t good for you.

I had a hard time waking up today. It was a good thing my app that reminds me to take my meds woke me up or I would have slept the day away and missed my PT appointment. I just could not wake up. I know part of the reason is that I went to bed late. I had gone to bed around 2300, only to wake up around 0130. I then played my game until my pain meds kicked in, which was at least two hours later. But I just did not want to get up. I really just wanted to stay in bed and sleep. I really have not had a day that I have done that. I have been doing some timed missions on my game so it has been occupying more space in my head. I should have requested some stuff before leaving the house, but I didn’t have time. I didn’t even have time to shower today. I will maybe later, if my hip/butt doesn’t hurt me. I need to go to my father’s tomorrow for his weekly pill box filling. So I can’t be “smelling”.

Shout out to LPS who reconnected to my blog via other bloggers. Love that people read my blog. I just hope that people find it useful. Otherwise, I am wasting my time.

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.

I’m screwed

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

I’m screwed

I had the appointment with the physiatrist today. He was a good guy, with a sense of humor and everything. We spent more than hour going over what to do with my ankle. According to the diagnosis he gave me for physical therapy, nearly every tendon in my poor ankle is inflamed. I’m screwed. I am happy though that he didn’t recommend a steroid injection. He wants to give physical therapy and a new medicine a try. The new medicine has some risks for someone like me. He warned me that it could make my incontinence worse. Fun. I am really hurting after all the poking and prodding. Hopefully, physical therapy will help me walk correctly. I do still have to wear an AFO (ankle foot orthotic), but he is recommending that I get a hinged one so that my ankle moves more freely. But right now, I am to keep my ankle as immobile as possible. He wanted me in a cast but I wouldn’t have it. If I go out, I will use the walking boot that I have. I don’t like it because it causes my hip to go out on me, but if it helps my ankle, I am for it. But there is no easy fix for my ankle. The doc hopes that PT can help stabilize it but with the nerve damage, there is no telling if that can happen. In the mean time, I am just going to go through the motions and see where they lead. If physical therapy proves to be too much for me, I am not going to go ahead with it and will say something. I am just glad the doc didn’t just offer me injections and that was it. But I still feel screwed that my ankle is so messed up when I really haven’t done anything major to cause it to be fucked up.

Right now I am feeling very sad. I am glad I know what is wrong with me (not like I didn’t) but going for physical therapy is going to be hard. I never know if I am going to get a gung ho therapist that thinks that if I don’t listen to him I won’t get better. I need someone that is willing to work with me and if I don’t have that, I am walking. Tough shit. I will find someone I can work with but it takes so much out of me, both mentally and physically. I know my ankle is messed up because I have been partly using it wrong, and partly because it is weak because of cauda equina syndrome. I don’t know what the hinged AFO is going to be like. I just hope it fits in my sneaker like my current one does.

I am in agony. Ankle pain just jumped to 12. I knew it would after all the poking and prodding today, plus walking the blocks to and from the various points I had to go to get to my appointment. I just put a NSAID gel on it to knock off some points. I hope it helps.

I really wish I had someone to talk to right now but there is no one. I really would love to talk to my psychiatrist but she is not available until Monday. I have emailed her all week and have not gotten a single response from her so I don’t think she is getting email where she is. She said she was at a conference. Least now that I know that I have a good doctor, I can cancel the appointment with the surgical fellow for the ankle that I had scheduled for Friday. With any luck, I might be able to see my psychiatrist. That would be wonderful. I miss her as it has been more than three weeks since our last appointment. I had to cancel our last appointment because of pain. She understood but it has been a nightmare trying to reschedule because she is so booked up. And we have been doing this via email so it is frustrating when I don’t get a response within a day or two. I do need her to refill one of my meds. And unfortunately, it is one where I need a hard copy, she can’t fax it.

My therapy schedule is also messed up next week because my therapist needs Tuesday off. Just when I thought things were going to be back to normal, they get fucked up again. I don’t talk with my therapist until Wednesday but I am going to see if we can do a check in on Monday. Hearing her voice some how calms me and lets me know that someone cares. I also need to deal with my father next week which isn’t going to be pleasant. I really wish I didn’t have to deal with him, my blood pressure would normalize for once, though it was good today at the doctor’s office. My pulse was still high. I can never get a resting pulse to be close to normal. It is always in the 80’s or higher.