Tag: disability

You know you’re having a bad day when

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

You know you’re having a bad day when…

You know you’re having a bad day when you wake up and a half hour later you are in severe pain. I just can’t believe my foot acted up. But then, this has been happening for the last few weeks. I can’t stand it anymore. I lose sleep because I am in pain and then when I do wake up, I am in pain again? It’s not fair! Usually my day time hours I am in manageable pain. It has gotten to the point where I don’t even notice it anymore. Now all that has changed. I don’t know if something else is going on with my foot, if I did something to cause it to be this way or if it is just nerve damage. I don’t really care of the cause, I just want pain relief. Luckily taking pain meds in the morning are working but it leaves me exhausted the rest of the day, even with a cup of coffee. Though my Starbucks funds are running low, I won’t be going there soon until my next pay period. I guess I over indulged when I bought myself some treats. Can’t help it. I love their coffee cakes.

Yesterday I was reading my support group email and a friend was telling the group how you need to mourn the loss of your old self as you are never getting back to it. Then a fellow blogger wrote the same sentiments about her illness and how disabled she felt but didn’t realize how much of herself had gone by the way side since becoming ill. She was crying as a way to mourn that loss. It got me thinking…maybe I am so suicidal because my grief is just too great. I got CES, Cauda Equina Syndrome, at the age of 25. It is a syndrome of nerve damage caused by compression of the cauda equina nerves, the horses tail, that is at the end of the spinal cord. These nerve control the function of everything below the waist, from leg movement, to going pee and having a bowel movement, to sexual function. It also controls sensation and proprioception, the awareness of where your legs and feet are. Once this is gone, your balance is affected. You might lose control of one or both your legs. You might not walk correctly anymore.

I have been through a lot the past year and a half. I have been diagnosed with a nerve condition called complex regional pain syndrome (CRPS), which is the chief source of my foot/ankle/leg pain. It is caused by already damaged nerves and aren’t I the lucky one to get both conditions. Since I have been diagnosed, I have been really depressed. I know there is no treatment other than opioid therapy. Though I have been in therapy with the same therapist for the last twelve and a half years, I still have not thought how much these conditions have affected my life until now. I no longer can work. At one time I was working three jobs. Now I can barely do one. Before going on disability, I was working two jobs. I wasn’t happy. Both jobs were stressful and caused me sometimes sleepless nights. But then I sprained my ankle and everything started to go down hill after that. I couldn’t figure out why the ankle, which should have healed in the allotted time, was still causing me pain. Why my leg still had swelling, why my foot and ankle were swollen. It didn’t make any sense. I saw one doctor after another. Podiatrist, orthopedists, physiatrists, neurologists. None could give me a clue until the symptoms became worse and a picture of CRPS started to emerge. By that time, I was having difficulty working both jobs. I ended up going to the emergency room in severe pain, pain that was causing me to think of suicide as a solution to end it because nobody could help me. I went to physical therapy and they were the ones to notice I wasn’t walking correctly. My foot does this swing thing that pulls at muscles it’s not supposed to while I walk, but only does so when I become fatigued. Which, one physical therapist showed, happens very quickly. And that is because I never regained my strength in my foot after getting CES. I never thought that at the age of 36 I would be disabled. And it hurts. Not having the social support of my coworkers anymore hurts. Not having contact with people outside of my family hurts. My friends that I thought would always be there are there no longer. They all went on with their busy lives and stopped texting and calling to see how I was doing. I don’t blame them. But I do miss them.

I guess when I have had uncontrollable sobbing episodes it was because of my grief that I have been avoiding all this time. I don’t know how to deal with it. I never thought that I would be in mourning. I never thought that I would lose my job because I couldn’t walk anymore. I still am able to walk just not for long distances. I can’t stand for more than twenty minutes without pain. I used to be able to do so much and now I can’t do anything. And because I am not financially stable. I can’t even go back to school while I ponder what my next move is. College is too expensive for me to afford. Even at the state school. I know I should put some time into getting a grant or something but I wonder if I am too “old” to get it. I have had to put my college education on hold because of my mental illness back in 2008 and I have not returned to school since then. But then I am not sure I can walk around campus and do the stairs like I used to. There is a lot of loss in my life on a very personal level. How do you mourn the loss of your functions? How do you get used to not doing something as “simple” as walking. I have had to relearn to walk again twice in my life. How many people can say that?

It makes me angry at times. I guess that is why I have been having fits of anger for no reason. I will just be in my room playing on my laptop or writing when all of a sudden these waves of anger will wash over me. I guess it is all part of the grieving process. And isn’t one of them denial?

Chronic Pain and Living

by Midnight Demon, posted in chronic physical pain, depression, suicide attempt, suicide attempt survivor

I have tried to take my life several times over the years. Currently, I am struggling with the difficulties of trying to stay alive. I keep coming up with plans to end my life. I give myself a date and when that day comes, I plan on ending it. This has been going on for a few years now. My therapist has been able to stop the constriction by telling me how my family will feel and how she will feel if I go ahead and take my life. I can’t help making these plans.

I have been depressed for as long as I can remember. I recently been trying to get at the “root” of my suicidality but the feelings evade me. I just know that between the ages of 5 and 8 something happened that made me want to take my life. And by age 10 I tried by putting a pillow case over my head. No one knew about this. I told my mother right before putting the pillow case I was going to kill myself but she did nothing. My confidence in her dwindled that day. I felt I could no longer trust her.

Five years later I am a freshman in high school and my parents had started World War III. They broke up and so did my wrist. I started cutting to relieve the pressure and pain. I used cutting to relieve the psychological pain that I was feel and it became my friend over the next seven or so years. Sixteen I was hospitalized and everyone found out about the voices. That was tough. I had wanted to join the military to get away from my family but having a psychotic diagnosis, I knew that I never would pass their tests. My career was over before it started and I fell into a worse depression. I kept on getting rehospitalized, like every three months, because I just couldn’t handle my life. I was getting worse and the suicidality was getting better. I kept on thinking that I was the end.

As I suffer from delusions and psychosis, two years ago, I had a funny thing happen. I had the delusion and voice of Allah tell me that I should sacrifice myself so that the war in Afgan would stop. As you probably could tell, I was off my meds again. My psychiatrist doesn’t think that I should be on them all the time because of the side effects. I had to re-start taking them because I was the sacrificial lamb and I believed all this earnestly. Allah was talking to me and I was the cause of the war of Afganistan. The only way to stop the war was to stop my life. So again I planned another scheme to end my life. Only this time, like before, my therapist stopped me. I tried very hard to get her to see that it had to be done and to think of all the soldiers I would save by ending my life. It seemed like a good win win. Sacrifice one life so all could be saved. Isn’t that what the military does? Allah was not too happy when I started again on my meds. He was very angry. And he also wanted me to end my life anyway because it was better than taking medication. I agreed with him on this but I couldn’t end my life. By this time I was back in the hospital. I was still delusional, thinking I was still the “one” to save it all. But as the medication started working, the delusions dropped and I began to see more clearly. The voices went away except for my regular voices that I hear all the time.

Since that time, a lot has changed for me. I have become disabled and am in chronic physical pain. I now too have a plan on killing myself and it is to happen some time this year. I have had enough. No pill can adequately control my pain and it is a tough position to live in. I have a condition known as Complex Regional Pain Syndrome (CRPS). It is a neurological disorder in which the nerves are out of whack and no one really knows the cause. I was “lucky” in that I had nerve damage already to my ankle and then when I sprained it, twice, I think it allowed the nerve damage to spread. Of course I also don’t walk correctly. I can stand here and give a lecture about pain and suicidal but I am afraid it will fall on deaf ears or not really reach the people it needs to reach. I wish you could say that you can live your life with chronic pain but I would be lying. There was a time when I was able to. I had adequate pain control and could work a full time job. That ended when instead of being placed on a regular psych unit, I was placed in a detox unit and my pain medication was stopped. Since that time in 2002, I have not had adequate pain control and I am afraid to ask. I have my pain meds but it only treats the physical type of pain that I experience. It doesn’t help with the burning sensation or the other electrical type pain that I experience. And nothing helps these types of pain. No cream or pain gel works. It might be enough to take the edge off so I can sleep but I am always in a 3-4 state of pain every single day and when my activity goes up, showering, getting dressed, walking to the bus stop or standing while waiting for the bus, then the pain also goes up. Sometimes all it takes is my moving my big toe and I am in pain. And with each episode, I think about death. I plan it, I imagine it, I dream of it. I no longer am able to work because I can’t walk more than 300 ft. I can’t lift things greater than 10 lbs. I can’t stand more than 20 minutes. And I am only 37. I got this horrendous condition when I was 25. It was a long battle and I wish that I could say that not working is helping me. In some ways it does. It helps me to write and distress. My voices are at a lower key than they were when I had a job. I don’t have the delusions as much. I just am constantly suicidal. And maybe one day I will. But as one of the bloggers Toni has written, “I am not living and I can’t die”.

out of spoons, again

by Midnight Demon, posted in blogging, chronic physical pain, depression

Today I am supposed to meet up with a childhood friend. I have known this person since middle school, we lost touch after high school, then worked together in the lab at the local hospital. We became better friends while working together.

I got up earlier than I usually do today. My niece had some excitement this morning and startled me awake and I couldn’t go back to sleep. So I showered and got dressed, brushed my teeth. Now I feel like I could go back to sleep. Most of my spoons have been used up. I am hungry but I don’t know what I really want for breakfast yet. I still am debating going back to sleep to recharge myself.

I am feeling out of sorts today and not sure I know why. I had a good sleep before I was rudely awakened. I found a composition book for my therapist to write in while she is gone. I thought of writing in there before here but I don’t really feel like writing twice. I am feeling kind of depressed. My Sox lost last night and the stinking Rays won. Now they are three games behind us instead of four.

I really need to do something with my time. I am failing at cleaning my car to get some money for it. I don’t know why it is so difficult for me. I guess I just can’t do it because that will mean losing the car for good. And I don’t like it. I kind of fell in love with the car but I didn’t take good care of it. I should have replaced the struts when I was supposed to but it cost a lot of money. And it was either pay off this bill or fix the car. I never have been good at budgeting money. In fact, I down right SUCK at it. But I guess with me just getting paid one time a month, I am learning. As long as I have money for my Starbucks (which is the highest priority), I don’t really care for much else. I have been living off cereal this week. I wanted to make some eggs but it seems too much of an effort. I guess I am too lazy to make an egg sandwich. But there are a lot of effort to go through to make the sandwich. Stuff that usually came easy for me are now difficult because the depression is rearing its ugly head. I find that making the egg, though seemingly easy is hard for me to do. I can’t stand long enough to watch it on the stove and then to prepare the round thingy to make the egg round for an English muffin, to use a spatula to turn it over. I just get overwhelmed. I don’t know why that is. I have like anxiety or something all of a sudden. I don’t like scrambled eggs any more. I haven’t been successful in making them in a long time. I can easily make an egg sunny side up but it gets boring after a while. I rather just stick with cereal. Pour the cereal, pour milk, and you are done. And one dish and spoon to wash.

Just came home from meeting with my former lab mates. It was a good outing and though I had a LOT of coffee, I am tired now. I am completely out of spoons. I don’t think I will be catching the Sox game tonight. I might listen to it on the radio in a little bit but right now I just want to chill on my bed and listen to some music. I know part of the reason I am so wiped out is because of the dreaded menses. I swear they have taken away any energy out of me that I have had over the last few days. I think I might be anemic. I am glad I am seeing my doc on Monday. I’ll see if he will do a blood count and to see what my uric acid level is. I was discussing my foot problem to a friend and he said it could be gout. I doubt it is but maybe it could be a slight case of it. I just know that the bones behind my metatarsals hurt me in the morning and night now and it’s not fun! I don’t know if it is a bone thing or a tendon thing that is going on in my foot. They just say I have swelling and every other structure is fine. So what is causing the swelling?? No one knows. FRUSTRATING!

I also for some reason have no appetite the past few days. I have been eating but I don’t think I am nearly hitting the 1000 calorie mark that the body needs. That could be another reason why I am so pooped. But I don’t feel like eating and I am not hungry. I should maybe have a protein bar for my supper tonight. All I had today was a piece of cornbread and half a pound cake loaf. And did I mention I had a lot of coffee??? Despite the coffee I am still exhausted. I just hope I don’t get my second wind because it might be another all nighter. I don’t have anything to do tomorrow so I could stay up all night but that just is inviting trouble to happen. I really don’t want Mr. Hyde to show his head again. My psychiatrist has been on my mind lately and I DON’T want to send her off one of my good bye letters. I will be involuntarily committed. And that is not something you can just say “My psychiatrist is nuts and is lying about what she is saying”. Been there, done that, didn’t work! Fricken spent two weeks in the hospital until THEY thought I was fit to go. I hated it.

how the midnightdemons came to be

by Midnight Demon, posted in chronic physical pain, depression

I am at my starbucks drinking my Kati Kati while reading Noonday Demon. A fellow blogger reminded me about it and decided to pick it up again.

Noonday Demon by Andrew Solomon is where I got the idea for the name of my blog. While he experiences his demons during the noon time hour, I experience them during the midnight hours. Thursday night was the perfect example of that. I was talking with my therapist today about this and she thinks I dissociated into Mr. Hyde again. I’m still trying to remember what triggered me. I had been depressed most of that day. My first blog of that day was me writing about how I was tired of living. I don’t know if that is what set me off or if it was my never ending menstrual cycle. Though I don’t think you can call it a cycle at the present time. It more like a never ending flowing that has gone on for weeks now.

I am just reading the part in the book where he is describing depression as a vine that just stifles you. With each growth, it just takes more and more of your energy to fight it until you are wondering why you are existing. You are praying for death as you can’t understand why the vine has not stopped your breathing. You continue to exist in this shell of an existence. That is how I feel right now. The depression, a word I forgot that describes me, has stifled my existence and is trying to extinguish me. These blackout dissociations are one clue that I am not with it. But the problem becomes how to deal with it. Hospital will only treat the symptoms of my depression, and there are no meds for dissociation. I still think that it is just a symptom of my suicidality. I am too far depressed and have crossed over into the blackness of existence. I may not feel suicidal all the time but obviously I still am on an unconscious level. Or maybe it is subconscious. Either way, I don’t know what to do about it. I am sort of scared that I might try to end my life while in this state. It most likely will be an impulsive move. And with that, I won’t have my crisis response plan to use. I will only be focused on whatever it is I am feeling at that moment and how to get rid of it. Luckily, the midnightdemons have only been writing about the end of my life. I don’t think I have attempted anything because I’m still here and there are no empty bottles of pills, knife or razor wounds, or ligature marks to indicate to me that I have tried something.

The mind is very complex. It can focus on writing something very emotional yet still listen to music as you write. I really want to try and see if the Neurontin that I take has been the cause of the dissociations that I have been experiencing. But I am afraid that if I do and something were to happen, I won’t remember it. I barely remember that I took the pills to begin with so obviously, something was brewing BEFORE my dose. I don’t take the Neurontin on a daily basis. I usually just take it when the burning sensation is too much or if I want to zone out. But lately, the being zoned out part has not worked for me the last couple of times I have taken it. Which is a total bummer.

If I do end up in the hospital, I have no idea what to tell my family. Usually I tell them I have to go in to adjust my medication or that I am just deeply depressed. It becomes a hard time for me because when I get out, I am watched like a hawk. Or it just becomes a surprise as I have not been showing signs of my depression. The only thing that is really keeping me out (aside from losing my phone) is my mother’s hypo attacks. I don’t think I can forgive myself if something were to happen to her while I was in the hospital, especially since now I think she has an infection in her foot. Infections and diabetes do not mix.

I wish my psychiatrist would respond to the email I sent her. Sometimes I just like acknowledgement of the email to know she got it and that it wasn’t lost in cyber world. But she is on vacation and I don’t see her until next Friday.

My Sox are off tonight. They are in Toronto for their series against the Blue Jays. I don’t know what I am going to do tonight. I might accompany my mother to the ER to get her foot looked at. I hate going to ERs. They are not fun. I am hoping they will take her quickly but it all depends on how urgent other cases are. I feel really bad for my mother. I know what it is like having foot pain. I go through it every day. In fact, I woke up with it this morning. I had to take some pain meds and I then fell back asleep until my mother called to tell me she couldn’t see her doctor today because he and the covering doc was on vacation. Does that make sense?? Why bother covering for someone if you know you are going on vacation too! Pisses me off.

So now you know how the midnight demons came to be called. Though I still don’t know what is causing them to exist. I think exhaustion has something to do with it. I am wicked tired and instead of sleeping, I just go off into Mr. Hyde until I do finally succumb to sleep. It just sucks that I am writing very dark stuff before I do fall asleep. But I have been lucky so far that I have not done anything. I hope it continues to stay that way. If I am going to kill myself, I want to be in the present state of mind and not be out of it. Or maybe it is better that I am out of it…