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.


For the past eighteen months, I have been in chronic pain with my left ankle. It started as a sprained ankle and blossomed into CRPS, Complex Regional Pain Syndrome. I have nerve damage in this ankle from Cauda Equina Syndrome (CES) and CRPS affects 80% of those affected with this condition. In my case I am repetitively inflaming my peroneous muscles and tendons as I do not walk correctly. The result is constant burning and swelling of my ankle and foot.

This condition limits my walking due to pain. In December of 2011, I decided to go on medical leave of absence to try and give myself a mental and physical break from working two jobs. I was working as a lab assistant in both research and clinical areas of a large hospital. Four and a half months later, I was out of both jobs. I had decided at the end of January to work just one job and that proved to be an error on my part. I think that if I was working with research my life would have been simpler as I wouldn’t be walking so much anymore. I am now on disability and I have to say that it sucks. I went from a working member of society to nothing in just four months. I just couldn’t do the work anymore. Walking around the huge lab was killing me. I had put in job restrictions and it was rejected. After working fourteen years in the same place, I was sure to get “special” treatment. But that was not the case. I had to move to do something more sedentary. That caused me to have a mental breakdown. I was in the hospital in April of this year and then again the end of June. June was a long stay. I was there for two weeks because mentally I just could not handle doing nothing anymore. I became psychotic with the stress of not having a financial income and not being able to pay my bills. Stress always brings out the hallucinations and most of the time I can handle it but this time the voices wanted me to cut my leg so I had to go back on my meds and stay longer to have it work.

It is very depressing to be disabled. It cuts you deep inside and makes you feel so bad. Although I am collecting I’m still trying to find myself. I have days where I do absolutely nothing, least that is what I call it. I might go out to Starbucks for a coffee and write or read. I might just stay home and sleep. I might write a blog or try and read. Most of the time I play on my computer, playing online games.

When I have the energy and creativeness to write, I write about my mental state and being suicidal, what it’s like being in chronic pain, and how I am living this way. I have a lot of time on my hands and don’t spend most of it in front of the TV. There are not that many shows that I watch on a regular basis. I record my favorite shows (CSI NY, CSI, SVU, Hart of Dixie) and watch them at my leisure, which is sometimes a few days after they air. I am just too restless to sit for forty-five minutes in front of the tube.

It hurts not being able to do something during the day. I wish I loved cooking but I can’t stand too long to do something like that. I like making cookies but I don’t like the clean up. As November is slowly approaching, I am thinking of making my first pumpkin pie. That will be my goal for the holidays. I just hope that I can stand long enough to mix the batter.