Tag: disability

tired of living

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, depression, psychache, suicide, suicide attempt, transgender

I am feeling blah today. I just finished taking a shower and though I feel refreshed, I don’t have any motivation to do anything. I have some time to get my coffee before my therapy appointment in a couple of hours but I just don’t feel like being rushed. Every time I do, I forget something, and usually the essentials, such as the keys to my house!

I responded to an email for my CESSG (Cauda Equina Syndrome Support Group) about physical therapy. I hope that the person doesn’t see a chiropractor. That is how all of my problems started. I think that if I was given adequate pain medication in the beginning of my back pain, I would not have gone to see a chiropractor or if I had stopped once the pain did I would not have ended up with CES. All the ifs that go through my mind, looking back.

I am especially feeling out of sorts today because I still have my fricken, goddamned menses. Just when I thought I was getting over it, it comes back in full force. I seriously am suicidal more so now than I was before. I just can’t take being a woman anymore. I have tried to stop the cycle and I am failing horribly. I am so sad. I hate being in this body. I never am going to be a man. And though I should be possibly reaching out for help, I just can’t. I just can’t bear talking about it with someone because I know I will just start bawling like a baby. Just writing about it is bringing tears to my eyes. It just is a deep emotional reaction. And even though I know there are other FTMs out there, I still feel alone. I just can’t cope with this anymore. I doubt that anyone really knows the frustration of dealing with this. I am trying to cope with it but how do you cope with something you know is WRONG?? I know I should probably go back to my reproductive endocrine doc and be like this isn’t working but why bother? She has been trying to stop this beast and has been unable to do so this past year. My confidence in her is down to nothing. I know I probably should go to the experts and see what they know but this Doc is the tops in her field. I don’t understand how hard it is to stop a fucking period. It just doesn’t make sense to me. And with every mense that I get, the closer I get to killing myself. I am done with it. I just want to die. I am in too much pain anyways. My foot was acting up soon as I woke up this morning. It’s sort of fine now as I took my pain meds.

I just am tired of living. Tired of trying to make sense of all this. I really don’t know what to do about my menses anymore. I wish it was easy to get through this but it’s not. Every time I wipe myself and there is blood I freak out. I just don’t understand why I am still bleeding. It’s been two weeks already. This is my third week. I was hoping it was getting less toward the end of the week but I was wrong. I really hate being like this. I hate feeling like a freak. And nobody understands that I am going to end my life because of it. I wish I knew what I was feeling but all I feel is hurt. I feel pain. I feel hate. Hate that I am not who my brain thinks I am. And I get weaker. I get more tired with each passing day. It just takes so much energy to deal with this. To wear underwear now that are made for females is just killing me inside. I might be called a masculine name but I am far from being it.

what it’s like living with CES, Cauda Equina Syndrome

by Midnight Demon, posted in cauda equina syndrome, chronic physical pain, depression

I took a shower today and then had breakfast. I am now at Starbucks having Isla Flores today because they were out of my Kati Kati. I am sad they are out. I don’t know if they will have it again and I am cursing myself that I didn’t buy a bag. It would have been awesome to have at home. I think I am going to have two cups today because it just feels like that kind of day. I am hoping I can work on my book today but I just don’t know where to go with it. I feel like it is already reading but it is only about 50 pages. Not even long enough to consider it a book. It’s more like a pamphlet. If I don’t work on my biography I will work on my lyric book. I started it the last time I was here but I kept on getting distracted and couldn’t so much as copy the lyric into the comp notebook.

I have decided that if I am going to write to my therapist, it is going to be in a comp notebook so that I am not wasting paper, per se. I don’t know if she reads my letters. Most times not because she just doesn’t have the time to read it. Granted the letters are no longer interesting. I no longer have clinical insights that made the letters interesting. I just write about my day, like my blog, and a little about what is happening to me emotionally.

Right now I am so tired, I could go back for a nap. I just can’t keep my mind on track. Maybe writing away from home isn’t for me. I know there are days that I can do it but most often than not I can’t. I have to be shut out in my room to think. I think it is because the voices are kind of shut out. I have the annoying voice back. She has been a constant intruder of my thoughts, wanting me to take more pain medication than I should. I don’t like this voice. I never have liked commanding voices. They scare me.

Today I was thinking about how my living with CES (Cauda Equina Syndrome) has changed since going on disability. I no longer have to think about my bodily functions as much or worry about them as much since I am at home doing nothing most of the day. The days of trying to work two jobs to support myself while constantly being in pain and then in the background thinking about if I will have an bladder or bowel accident are over, least for now. I don’t live freely as sometime I do have a bladder accident or a bowel accident from time to time. I would have had one today had my stools been softer, even though I was home. What I thought was gas was really stool trying to come out. I can’t tell the difference anymore since I lost feeling in my rectum almost seven years ago. It something I don’t talk about often because I know most people think that I am normal. Most people who read my blog do have CES. I don’t have the full-blown version of CES, the complete foot drop, leg paralysis, loss of saddle feeling, loss of bowel and bladder function. I have what I term CES-lite. My CES was caught early both times I got it. I have the weakness in my foot, no ankle reflexes in either foot, and some impairment of the bowel and bladder. I won’t discuss the sexual feelings that I lost because it is painful for me to describe and I have had a tough time dealing with that loss.

I really don’t know how I was once able to work two jobs with the level of pain that I was in. Of course the pain was not as prominent during the day as it was at night. When it started happening during the day and interfering with my work, that is when I had to reevaluate my situation. And I unfortunately, picked the wrong move. I should have stayed with my research job because even though I had work restrictions, my research boss would have been accommodating to some degree. And I could apply for SSD and still work part time. Now that I can’t go back because I no longer have a car nor a good driving record, it really sucks.

Pain is NOT my Friend

by Midnight Demon, posted in cauda equina syndrome, chronic physical pain

Pain is not my friend

Most people have pain for a good reason. They break a bone, there is an infection, they stubbed a toe. But my pain is not because of that. It is because my nerves were damaged by a disc fragment that I am hurting and even though the disc is no longer pressing on my nerves, I still have the pain.

Tonight this pain is keeping me up. I think it has to do with the temperature change and thunderstorms that have moved into my area. I am like a human barometer. I am so tired that I am kind of falling asleep while typing this but the pain is preventing me from actually going to sleep. I have not had this type of pain in a few weeks. I almost forgot what pain was like. Now I remember and I don’t like it. I want it to go away again and let me live my life even if I was depressed and unhappy. Being in pain is horrible. It drains what ever energy you feel.

Even though I felt ok for a few weeks, I kind of missed the pain. Not in a masochistic sense. Just that after dealing with this for over two years, it felt weird NOT being in pain. Felt like something was missing and I just couldn’t figure out what that was. I had gotten so used to the pain being there all the time that without it, I was lost. Could I walk a little farther than I wanted to? Sure and I did. No pain afterwards. Today I walked a little farther and I think that is what caused the flare up. I don’t know if this pain is staying or going. I hope that it is going because I was really getting used to not being in pain again. Now I have to worry about things, like how long it will take for a shower. Just how many spoons it will take to do my daily routine. Even now I can’t find a comfortable spot to rest my foot without pain. And my foot/ankle is screaming at me. I am not doing anything to aggravate it. It is just resting on a pillow as I am typing this. I don’t have it elevated as I probably should because it will make typing a little difficult. But even then I don’t have relief. I wish the pain was telling me something but it is not. There is no bruising. No redness. Not even so much as a little swelling to indicate to me what I should do to relieve the pain other than to take pain medication as I have done. That is the MOST frustrating part of this whole complex regional pain syndrome. It is a difficult diagnosis to explain and I don’t even know the beginning to try to explain it. Other than my nerves have become so damaged it doesn’t know anything else except to hurt. And you can’t touch it with anything. Socks or even your hand will make the pain worse. I tried putting on a brace to steady it because it just felt like it needed it. It did help for a little while but then the pressure of the elastic was too much and I had to take it off. Soon as I did, the pain intensity increased. My ankle hates me and all I did that set it off was moving my big toe to stretch it out. Stupid I know. But really? Probably not. I am sure lots of people can move their big toe without pain or causing their entire foot to go haywire. But that is what I deal with. Every day. Every night. Pain is not my friend.

RAMBLING 40

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, suicide, suicide attempt

There have been many times in the past few days with this pain cycle I am going through that I have wanted to just throw in the towel. but then I can’t be there for my mom and that bothers me. I hate to think that if I wasn’t here on Tuesday, if I had gone to Framingham like I was hoping, I would have lost my mother. I know my sisters would never forgive me. I just feel with this much pain I just can’t fucking cope. How can you cope with this shit. this shit is so fucking tough to deal with. I take my meds and I usually get knocked out. I took them today as if they were nothing. I am still coherent and not drunk but my foot is still rearing its ugly head saying I am still here and you can’t do nothing to touch me. i just took my second round and i am wondering if i am going to sleep tonight. Ice just made my foot numb but then the feeling came back worse. And yet I still have to live and put on a happy face because I can walk “correctly” and look good to people. Fuck that shit. I am done being the nice guy. I will tell people I am struggling but I never mention suicide. I told my friend in the UK my plan and all she can say is don’t do anything silly. What am i supposed to do? I can’t cut my foot off, though I would love to. at least with the possible phantom pain I will have a reason for the pain and maybe welcome it better. I don’t know. what I am reading about suicide doesn’t cover chronic physical pain. I took a psychache assessment today but couldn’t finish it because my head can’t distinguish my physical from psychache. I have no idea if I am making sense or if i am rambling so I will stop here.