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.
Category: CES
living with disability
Been thinking how this is the umpteenth Saturday that I have been out of work and I have to say not working on a Saturday night is weird. I had worked nearly every Saturday since 1996, with the exception of when I had to take the day off for family functions or vacations. It sucks to be disabled and I still cannot believe how fast things went from sucky to downright horrible in four months. In four months, I went from working two jobs, to working none. After fourteen years of working at a major medical center in the heart of academia, I was done, finished due to chronic pain cause by a disc fragment the size of an almond pressing on my nerve roots. This didn’t happen overnight. It took ten years to progress to a condition called Complex Regional Pain Syndrome (CRPS), all due to the fact that after my foot drop, I never regained strength in my foot/ankle enough to walk like a “normal” person or at least the way I walked before this fragment wrecked my life forever. I still remember going to a physiatrist that my psychiatrist highly recommended, only to be told that there was nothing to be done. That I was to live my life as is for the rest of my life. That my foot slapping and weakness was never going to get better. I just wish that he took the time to give me some alternatives other than this. If I perhaps was put into an AFO (Ankle/Foot Orthotic) sooner rather than later, maybe the outcome would have been different.
I have been trying to work on a comparison paper for the past few weeks and have hit a road block. I don’t know where I want this paper to go and am stumped as to who to ask for help with it. It was my idea but the depression of last month kind of through me for a loop and I am now trying to get back to my writing. The hard part is that I think this paper sucks, or rather that my writing sucks, and I just can’t move forward on it. I lost whatever it is that I was thinking when I first wrote the paper and I just can’t get back into the groove. It is very frustrating. And having to deal with my ankle flaring up every night for the past three weeks has not been helping me. All I wanted to do today was work on this paper but after I read what I wrote I just felt defeated. I don’t know if there is any salvation in what I wrote. I do know that my own criticism of the paper is what is getting in the way. I think it is stupid and doesn’t have any merit, but then I think all my “good” papers are that way. Today I got a good review on my psychological pain paper that I wrote in college. I am still trying to work out how I can go back to school. I want to be able to finish my degree. I am just working very slowly to actually getting up the nerve and doing it. I just hope that I still have time for my credits to still be worth something. It has been four years since I left college due to a psychotic break. Talk about being psycho. Books, email, and the radio were “talking” to me. I was utterly convinced that every song on the radio had a hidden message for me, that all my emails were somehow going being linked to the biggest asshole in the hospital I worked at and he was going to get me fired. While I was reading books or papers, the words were “dancing” and speaking to me in different languages that only I could decipher. Not to mention the voices I was hearing and the paranoia I was feeling from the asshole. Then when the normal meds were still not working, I had to go into the hospital again to get things sorted out because I developed another delusion that a coworker was going to kill me. I was sincerely convinced that she was. But once my meds were on board and I had to take them, it made thinking difficult for me. I no longer could distinguish my thoughts from the voices and when things were silent, I just couldn’t function. I have been hearing voices since I was five years old. I learned to adapt to keep them a secret but when you take meds that are meant to control them, everything stops and you just cannot think. I had a hard time reading and writing. I found that I would read the same paragraph over and over and not comprehend what it was. Words lost their meaning. It was a very difficult time for me and so I decided that school was causing me a huge stress and had to be cut out. I just had to focus on my jobs and getting back to good. Unfortunately, this still hasn’t happened. But I am hoping that with me not working, I can finish my degree. I just am fearful that I will become psychotic again from the stress of deadlines and exams.
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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