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.
Tag: CES
rough day
Been having a rough day. CES flair up left me feeling pretty down. I have been avoiding taking a nap so far but I had to take some Ativan so should be sleeping soon. I took it because I was freaked out after hearing a freaky noise in the house. I was the only one that heard it so of course no one believes me. It sounded like a door creaking open but the door was already open so why the noise?
Voices have been ok until I got a tweet from Voldemort. Now I think he is personally sending me messages. I think its pretty funny I think this way even though I know I am losing my mind. I guess months of boredom has finally drove me nuts.
I started taking the abilify again. I really don’t want to end up back in the hospital. I just don’t understand why I become psychotic after a severe bout of depression. I know I have a psychotic features of depression, but this is kind of unusual.
Today my mother pissed me off. She saw my OLD scars and thought they were new. I HATE it when I am accused of doing something when I haven’t and if looks could kill, I would be dead. WTF. Why would I lie? I haven’t cut in years and though I walk around with t-shirts all the time, they are clearly visible. That’s what scars are. Old wounds that are still visible. They don’t go away no matter what you do. But don’t sit there and pretend that you don’t know about it because you know you do. Granted she has never really seen the full extent of it. I am just too stubborn and shameful to show it willingly. I am not proud of them but it served a purpose in my life for a few years.
Ankle is killing me right now. I swear if I am not dealing with one type of pain or the other every single day. It SUCKS. I swear this morning I started with the waking up and wanting to die again. I just can’t take waking up. It pisses me off. I don’t want to live yet I am “forced” to. I hate myself for living every day and being a coward for not taking my life.
Out of Spoons
“I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.”
This paragraph is taken from http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.
I wanted to best demonstrate the issue of the spoon theory. Her friend started out with 12 spoons, much like I did today. And before she even took a shower she was down to 3 spoons.
I decided to change my bedding today and it took all the energy I had to do this. My depression, pain, and the weather has kept me inside the past few days. I was tired of sleeping in sheets that haven’t been changed in months. So I cleared off what was on my bed and slowly took the blankets off, then the sheets and pillow cases. There was 5 spoons in this effort alone and I still haven’t gotten through the day yet or put the clean sheets on my bed. After I struggled with my full sized mattress, I just laid on top of the bed and realized I had to get up again to get my laptop which was on my desk. Another spoon. I was mentally and physically exhausted and I hadn’t done anything but change my sheets. I had to rest. It sucks having pain and exhaustion all the time. I still hadn’t brushed my teeth or made myself something to eat and I was starving. I decided to order pizza and wings. I checked email and rested while the order came. After the food came, I really have no idea where time went. I know I saw my niece, ate, and what happened after that I guess no one will know. I don’t know if I watched TV or played more on the computer. To really put myself back some spoons, I decided to brush my teeth and take a shower. Now I am all out of spoons for the night and I still have not taken my night meds or emailed my doctor. My ankle is throbbing from standing in the shower for the ten minutes it takes for me to wash up. Ten minutes of agony. Another five minutes to brush my teeth and then I am out of the shower. I’m now up in my room under my clean sheets writing this blog and feeling like I am going to pass out. I didn’t do too much today. But it was a lot. Tomorrow I probably am going to pay for it like I usually do. Hopefully I will start off with at least 10 spoons for the day.
Baseball Season is officially over
Tonight the San Francisco Giants swept the Detroit Tigers in the World Series. My Baseball Depressive Disorder has peaked. Now I have no baseball games until Spring training in March, a mere five month wait for something I love more than anything.
I went out with a friend of mine who I haven’t seen since May. He finally sold his house in Boston and is now temporarily living in Marlborough until things are settled for his condo in Revere. I hope that he likes Revere and he is by the Blue Line as he works in Boston. Traveling can be hard between these two cities by car. He wants me to help him with his Facebook page and I have agreed. It is freelance work, though I have told him I know nothing about eye conditions but he is willing to teach me. He is an eye doctor, and in my opinion one of the best in the Boston area. I have been seeing him since I graduated high school. This volunteer work will help me keep busy. I love learning new things and I am sure it will help him and his work.
I still am feeling kind of weird since I am living and I have not attempted suicide. I feel like it is a loss that I am never going to recover from. I know this must sound weird but it’s true. I have been trying to attempt to kill myself since 2005 and have not made one single attempt despite all my planning. I have come close a couple of times but I have never really gone past my planning stage. What changed? The fact that more people need to be aware that there are people like me who think about suicide all the time yet do not tell a single soul about how dark their thoughts are. I have my therapist to talk to about this and she is the ONLY person that knows how I really feel. I don’t confide in anyone else. I would talk to my psychiatrist but I have been avoiding her. Mostly because I just feel like a burden to her. That is the hardest part of this illness is knowing you are a burden to others even though you may not really be in reality.
I still have yet to go back to my comparison paper. I really am just procrastinating on it. I want to be able to work on it while I am sitting at a Starbucks. And because my depression is so bad I hardly leave the house, I just have not been in the mood to bring my laptop around the city to go to Starbucks and sit for a few hours. I have been becoming more reclusive and I hate leaving the house for any reason. I just like staying in my room all the time goofing off on my laptop while Facebooking or blogging. I haven’t had that many emails to respond to. My online CES support group has been quiet lately. Like everything else, it ebbs and flows. Sometimes there is a lot of chatter and other times there is very little. It all depends on what is going on and if people have things to add or suggest. This group has been a life saver for me because without it, I would feel totally alone with my nerve condition.
midnightdemons7 
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