I was pretty excited this morning and energetic for the first time in I don’t know how long. But pain kept me from doing all that I set out to do today. I really got depressed and cried for almost an hour because I had plans to go to a movie with a friend and had to cancel on him. This is the second week that I had to do this to him because my pain levels were high. I wanted to make cupcakes today and that was a flop because after I went to the store to get the ingredients and supplies, I was just in too much pain to stand, let alone do much else. My sister had a BBQ today so I tried to attend that and just sit and rest but sitting caused me more pain. And it was hot and muggy today. Even though my sister had the AC on my fricken stupid aunt got “cold” and made me turn it off. I got so pissed off as I can’t stand the heat. This condition (CES) has left me so heat intolerant it literally boils my blood and my temper. I had to go back to the confines of my room where I have been for the past several hours. I had to stand for a few minutes to take my night time meds and now I am in wicked bad pain again. I feel like such a loser because things were going so well and now I am hurting and am a sobbing mess. I have been looking forward to doing something, anything, since I got the recipe for these cupcakes and now they will have to wait. I hope they come out good when I finally make them. I just don’t know when that day will come. I am so tired of hurting. All I did today was shower and go to the store. Day was done after that. And I am so pissed off. I can’t stand myself right now. I have feelings of overwhelming sadness that I just can’t shake. Surprisingly, I am not suicidal, though I just want to stab my ankle repeatedly.
Tag: CRPS (formerly RSD)
writing, pain, and music
Woke up to my phone sounding emergency broadcast. Scared the hell out of me and then I heard a big BOOM of thunder. Wicked bad rain and flash floods in my area. Just wonderful on a cloudy Sunday.
I also woke up to my back hurting me and of course my ankle. I just took a shower so it really doesn’t like me right now. But I had to take a shower as it has been days since my last one. I was feeling pretty gross.
Today I am supposed to meet up with a friend for the movies. I hope my ankle pain has stopped by then. I also am planning on going to the grocery store to get the ingredients needed to make my cupcakes. I really want to do something today rather than just lay in bed resting my ankle. I know that going to the store and then making the cupcakes are going to hurt me big time. I am not looking forward to it. What is worse is that my sister is having a BBQ today. I don’t see how as the weather has on and off downpours for the next several hours. She wants me to bring the cupcakes. I don’t know how I am going to do all this. And just the thought of it is stressing me out. Stress and already being in pain is not a good thing. I just put a brace on my ankle. Pain is getting unreal but I don’t want to take more pain meds because I have things to do today. I just want to go to the grocery store and get the supplies I need for these damn cupcakes. But I just heard thunder rolling again so maybe today is not going to be the day to go.
I also have to write four pages for my book. I thought today I would talk about the struggle of being transgender. I don’t know if I can stretch it to four pages but I can try. Or I might talk about something else. What, I have no friggen idea.
I am mad crazy listening to Luke Bryan’s new CD Crash my party. There is not a song I don’t like. I have listened to one song, Play it again, over and over and over. Guess you can say I have been playing it again and again. Or as Luke says Agin! He has become one of my favorite male artists. I don’t know why I like him so much. He just has a good voice and his songs get me into a good mood. It’s like listening to Taylor Swift when I am having a bad day. Crash my Party is by far the song that gets me all mushy inside when I hear it.
I did too much. I went to the grocery store and then picked up my prescription. No movie tonight. No cupcakes made. Just listening to the ball game now and trying to relax. I am in so much pain. I feel really bad for my friend that wants to see me. I can’t even bring myself to call him back. I had a feeling I wasn’t going to be able to do all the things I wanted to do today. I know I went up and down the stairs too much. Not only does walking around the grocery store did me in but going to and from my sister’s apartment did also. I just can’t win and it gets me really depressed. It really sucks to not have use of your feet.
I know I should call my friend and let him know that I am useless today. I know either way he will be disappointed. I hate disappointing people. But I can’t do too much on my feet anymore today. I need to rest my ankle otherwise I am going to be in more pain. And I can’t be going down the stairs anymore. Even though I really want to go downstairs and watch a DVR program. I am really upset with myself. I hate that I can’t do more than just take my shower, go to the grocery store and then I have to rest because I am in pain. It’s not that I am exhausted and need to rest. I still have energy but I just can’t STAND. I can’t WALK. It is just that I am in PAIN. It is a 9 and I really don’t want it to get above a 9 because I will really be in agony, more so than I am in now. I have a high pain tolerance. Usually anything above a 7 will get me to slow down. But I feel energetic so I am pushing myself. But now I have pushed myself too much. I hate that I have energy and can’t do anything with it. I feel so bad. I even took a pain med before I took a shower hoping to keep my pain in check but it didn’t do anything. I took another pill after I came home from the grocery store and still my pain has not calmed down, though it has calmed my nerves down. I really, really hate this. I honestly have no idea how I was able to work two jobs with this pain. I know I ignore most of it but I guess when you don’t have anything to distract you, you think about it more. I am not saying the pain is in my head. I know it is not. If I touch my ankle, I will scream. Right now it is feeling a little better now that I have it elevated and not putting any type of pressure on it.
I am going to stop here because I still need to write up some pages for my book. Until tomorrow…
I am a survivor of suicide attempts
I wrote a quick blog yesterday about the stigma of suicide. I asked wouldn’t it be nice to say to people you survived suicide like you survived cancer? I listened to the WEEI radio to hear my Sox game and it amazes me how quick people are to say they survived cancer but hide in the dark when talking about taking their own life. Both people are fighting for their lives. Granted one is bodily and the other is mostly mental but it still begs to question why there is a different in the illness. Suicide is the result usually of untreated depression or other mental illness. Most people think that it is depression that causes people to think about suicide but it is not. You can be psychotic and think about killing yourself. I know. I have been through it with my psychosis. I have had voices tell me to kill myself, in fact in one of the delusion it was considered a command order. Psychotic disorders often get tossed by the way side when considering suicide but a recent article in JAMA showed that it can pave the way to catching suicide attempts if asked about. The study showed that teens with psychotic symptoms are more apt to attempt suicide than non-psychotic teens.
But you don’t need to be in a mental state to be in the suicidal mind. That is what is so devastating about suicide is that people before they commit suicide look and act “normal”. I know that people who are suffering from cancer can look anything but normal. They can be bald or look skeletons. They are really fighting to be alive while those that are thinking about suicide just want to die. People with cancer are the lucky ones. Their suffering will end. People know this. But those of us with mental illness we continue to suffer and when we decide to give up and end the fight, we are looked down upon and treated often inhumanely. We then feel ashamed of ourselves for trying to end the pain and failing at it. We end up in the hospital to “save ourselves from more destruction”. All we want is peace, same as the cancer patient that is terminally ill. We want the suffering to end.
To some people, they believe that suicide is preventable. To some people it is but you are not going to catch the majority of people most at risk. You cannot stop every suicide. People have the right to kill themselves if they so choose to do so. It is the ones that survive that have the right to speak about it. Because those that survive depending on their reaction to their own attempt might be clues to whether they survive or not. I have survived the past several years despite making elaborate plans on killing myself. I really want to die but my reasons for living keep me going. I don’t like it but I can’t picture my sister telling my eight year old niece that I have passed on. She is my baby and I don’t want to hurt her or my other nieces or my nephew. My nephew is what kept me going during a very difficult time in my life. I wish that I had succeeded but because I didn’t, I got to see him grow into a man and graduate from high school. I didn’t think that he would or that I would live to see the day he did.
It saddens me that I am still alive when all I want to be is dead. I don’t know why I preserve. Right now I am in a lot of pain and I don’t like it. I don’t know if I am going to get any sleep tonight because of it. Where is the training of medical doctors to handle chronic pain? There isn’t any. I don’t get asked what my mental status is during medical visits anymore. It is just assumed that I am ok because I have a smile on my face. Didn’t matter that the day before I was in so much pain that I was in bed all day, taking pain pills every four-six hours. Maybe I was happy because I could finally get out of the house and go to my doctor’s appointment and I wasn’t in pain. The siege was over with. But now it has returned and the meds have not kicked in yet to knock my big ass out. I am tired of living with chronic physical pain all the time. It sucks the life out of you, what ever life is. And if it doesn’t, your mental illness will surely do it for you. There is no reprieve. No relief in sight. And that is why suicide is what it is. For people that survive it, they should be able to say that they have. But no one does. There are a few people that have been coming out slowly through the AAS blog but I fear that the ones that don’t come out, are the ones that will try again and maybe succeed.
I am a failure of suicide attempts. And because it has been so long since my last one I am not going to try again any time soon. Least for now. So I am in pain and I have one option left to me…to suffer.
You know you’re having a bad day when
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?
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