Tag: disability

The invisible weakness

by Midnight Demon, posted in chronic physical pain, depression, suicidality, writing

I spent most of the day wondering what to write today. I thought I would play with my dragon software that has been laying idle now for a month but had a yearning to listen to Garth Brooks so nixed that idea.

I have been reading the book “writing the breakout novel” by David Maass. Though I never attempted to write a novel, he is giving me ideas for my next book. I am thinking of writing about the most traumatic point in my life but fictionalizing it. I think I can do it. I don’t know if I can write a book about it, maybe a short story, but who knows. I will outline the chapters and such. This book helps with all of that. I could have a breakout novel or novelette.

On another note, been stewing on this all week and I finally can’t hold it in anymore. I have had trouble with my left ankle since 2009/2010. I can no longer stand for long period nor walk long distances like i used to. The reasons for this is not clear as every single test (xray/mri) has come back normal. The only thing that my doc still refuses to believe to this day (and I brought it up to him on Monday) is that I have nerve damage that flares up when I do too much because my ankle becomes fatigued. Because of this, I have gotten an AFO in 2011, took 2 bloody years to figure out that when I am fatigued, my ankle goes from a scale of 1-5, a 4 to a 3/2. AND HE STILL REFUSES TO BELIEVE THAT NERVE DAMAGE IS CAUSING MY PAIN. He thinks I haven’t found the right doctor yet. I have seen 10 of them over the course of 2010 to 2012, specialists from orthopedists, podiatrists, physiatrists, you name the specialty and I have seen them. But because NOTHING shows on the xray/MRI, they don’t want to treat me. Frankly, I know what is causing my pain as long as I don’t exert myself but that is hard to do. Just doing normal activities, standing to make an egg for example, will tire me out or standing to take a shower. I finally got disability but my doc thinks I could be more functional! Yea, if I could go back in time and fix my CES and not see the damn chiropractor! I am just so frustrated, actually beyond frustrated.

So when I bring up the fact that I have nerve damage in my foot and weakness, he brushes it aside as if it is nothing to think about. HUH??? But he still writes out my pain medication script and for that I am grateful because otherwise, the day he doesn’t do that is the day he signs my death certificate, far as I am concerned. My therapist and psychiatrist know this. Actually, I think my psychiatrist knows what is causing my pain but psychs don’t prescribe narcotic meds. It is a shame. Because if she could, and I wouldn’t have to deal with my PCP idiot, I would be a lot happier. I wouldn’t have to go through the rigmarole every month. There isn’t a doctor out there that wants to help me anymore that knows about nerve damage and weakness. If there was, I am sure I would have found them by now. I have seen at least five ankle specialists alone but because nothing shows up on the Xray, they just think I am fine. Well, I am fine. The damage is not in my tendons or bones per se. It is with the muscles that support my tendons and bones. When those muscles weakens, I start getting fatigued. The more fatigued I get, the more I try to walk improperly and that in turn causes me pain. I just wish my doc could understand this formula but nope. It has to be a PHYSICAL structure that is causing this. I am starting to think that if he were a psychiatrist, he wouldn’t believe I have depression because he wouldn’t be able to see it. Same thing. How I wish weakness (physical or mental) could show up on an X-ray. Maybe more people could be helped.

Right now, after all the little walking I did to get my mocha and a half gallon of milk, I am hurting. I have therapy in two hours and I am contemplating taking a pain med. But I am in a messed up mood anyways, so what difference does it make if I take it or not. Pain will only get worse and I rather deal with this level of pain than see it get worse.

bad day: stuff you don’t talk about

by Midnight Demon, posted in cauda equina syndrome, depression

I have been in a rotten mood all day. Started when my bowels woke me up and I wasn’t happy about that. I don’t know if I caught a virus or something was upsetting my stomach but man I just made it. And having CES I was lucky to make it. Usually I am safe when I have hard stools, which they were. I did go an hour later again and it was softer stool. Luckily I was already in the bathroom because I had to pee. So my day started at four in the morning because of this. I have been trying to get back to sleep but either the phone kept ringing or I was getting text messages. I am very tired and though I have shut off the phone and laid down for an hour or so, I didn’t sleep. I talk about this stuff not because I want the world to know my bathroom issues but because no one talks about life after CES. People think that you are normal because you “look” normal and that is just not the case. Sure I was lucky that I didn’t poop my pants today but I could have and it would have really sucked. Normal people don’t think about these things. Sure they might be constipated or have irritable bowel but with CES the nerves that tell you to go are affected. I was lucky I had some warning with bowel cramps (which is what woke me up). But I didn’t expect that to happen at four in the morning. Even if it was four in the evening, I still would have trouble deciding if I was going to go now or later. With CES, you never know when you are going to go. And it’s tough living this way. And because my bowels were unpredictable, it meant I couldn’t leave the house like I wanted to do today. So I figured why bother taking a shower as I wasn’t going out. I will just stay stinky. The depression surrounding this is great. I don’t talk about it much on my blog but I am today because it makes me sad that I can’t do the stuff I normally can. No I didn’t have an accident but I could have. And that scares me. I try very hard to keep myself regular but it’s not always easy.

I think the reason for me not sleeping, other than my ankle deciding to act up, is because I am itching to install the Dragon Naturally Speaking software. Only problem is I am not motivated to actually do it. I have no motivation at all today, not even taking a shower. And I need one really bad as the last time I showered was Friday. I might do it tonight before going to bed. My therapist said that is my goal for the day. I kind of want but don’t want a session tomorrow but my stress levels have been enormous since dealing with my father. Then my mother calls and wants me to go to Walgreens to pick up their paper and check the price of their eggs. Screw that. I am not going out today because my bowels are unpredictable. But I can’t tell her that. I really don’t feel well so I will go with that.

I sent an email to my support group about the “lovely” day I have been having and someone wants me to take fiber. Sorry I already do. I just got a score of fiber pills on Amazon. Normally these pills run like 11-15 bucks for one bottle. I got two for the price of 11 bucks. SCORE. I really need help with regulating my bowels. I will be the first to admit it because I don’t eat right and unfortunately I don’t cook. Even if I were to buy vegetables my mother would boil the crap out of them rather than steam them so they are healthier. I swear my mother got some Irish in her because she boils just about anything or fries it. She once boiled Roman lettuce. She said it was good. I took her word for it. But I don’t eat a lot of veggies. I mostly like pizza and burgers and the occasional Thai food that I buy. I also eat a lot of cereal. I find that it helps my appetite and keeps my weight down, which is good because I need to lose weight. I lost six pounds this month and I think it is because I have been eating cereal. I will occasionally make pancakes or fry an egg but I will have cereal mostly. That is the gist of my cooking skills. I tried to make Hawaiian chicken in the crock pot last week and it came out ok but the chicken was dry. I think I overcooked it.

So I have done nothing today. I haven’t looked at my book or any books today. I haven’t written in my journal. Just did nothing but stay in bed, when I wasn’t running to the bathroom.

wicked depressed

by Midnight Demon, posted in depression, mood disorders, suicide

With all this technology, you would think that you could just talk and the computer would do the writing for you. Oh Wait, that does exist. Except the software is really expensive when you are on a limited budget. I had to choose between my cell phone bill or groceries and groceries won. Everyone keeps telling me to apply for food stamps but to me that really is a downer and a flashback to my childhood. I thought I was doing better than when I was younger but I guess not. I am just above the poverty line and it kills me that I have sunk this low again all because I am disabled. I feel as long as I have a cell phone, I don’t need food stamps. Let the people who are really struggling get them or the illegal aliens who know how to get them and still work three jobs. I just don’t care.

I feel like crying and I don’t know why. Just texted my therapist that I don’t think I can wait until Tuesday to meet with her again. I just feel so stressed out. I am wicked depressed. Last night I wrote two pages about Darkness. It sent me into my dissociative state because apparently, I sent a text message to my therapist and I don’t remember sending it. The last message I remember sending was me deserving to die. I need to type up what I wrote but I am afraid that will trigger me again. I just hate this dissociative crap. I half remember what I wrote and half of me doesn’t. I just know I must have used darkness repeatedly because that is all I remember. What stinks is that I bought a software program for speaking into the computer to type my words (Dragon Naturally Speaking). Problem is, it is not compatible with Win 8. I have to get the current version and it costs a lot. So I bought what I could afford, I nice headset with a microphone. Next month I will buy the Dragon. I hope that it will be cheaper than what it is now. I could use it on my old laptop that still works but I have to reinstall the software and it takes forever to do it. I just don’t have the patience. Plus the laptop gets hot really quickly so I will burn my legs.

I hate being in a bad mood. Therapy went ok today. She didn’t nag me but went off about how important it is for me to have my pain meds from a psychological viewpoint. It’s complicated to explain, but her theory is that if I have my pain meds it provides me with a type of security blanket so I don’t freak out when my pain is at its worse. Because the pain can trigger my PTSD symptoms really fast, this is why having my pain meds is important. But my doctor doesn’t want me on them long term. I haven’t figured out what long term exactly means because I have been on the same pain meds for last decade or so. I might not take them every single day but knowing that they are there in case I need them is a big relief for me. I would be going out of my tree if I didn’t have them. And if I was in the throws of a flare up, I know I would become suicidal. So I guess that is the psychological viewpoint that my therapist give me every time I see my PCP and he has some lame brained idea to get me off my meds. I’m sorry, but the pain meds are the ONLY thing that has helped me and I have tried all other non-narcotic pain meds, from pills to gels, to creams. Nothing else works as well as my pain med.

I don’t get high off my medication. I don’t use it illegally. I don’t sell my meds nor do I take more than prescribed. The only time I will take more than prescribed is when my pain is at a level of 20, and my doctor knows this. That is why he has given me a little more than a month’s supply to make sure I am covered should I have a flare up.

I guess you can say I am having a flare up of depression. Today it is breathing down my throat in a big way. I find it hard to concentrate and to get motivated. I wanted to go out to Starbucks today but the weather was iffy but it turned out just to be a cold day, no snow (so far anyways). I just feel out of sorts. And I want to die very badly. I wouldn’t mind stepping in front of a speeding semi rolling down the road. Or playing on the train tracks.

they will float away

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

I had my weekly therapy session today. We talked about the new book that I was writing as I am not happy with what I am writing and she said that I “write magic and things come together” whenever I look back over what I wrote. So I am going on that assumption even though what I wrote feels like shit. She doesn’t know how I write like I do. I don’t either. I just do. Maybe it’s just my artistic temperament. I don’t know. I felt like she was saying these things just to booster my confidence but I feel so low that it didn’t work this time.

I told her about my lows, how one day I am “fine” and the next I am thinking of killing myself. How can you go from being okay to thoughts of killing yourself is beyond me. My blogger friend was describing feeling empty last night. I guess I am feeling that today. I don’t know if my writing is effective anymore. I just feel like I lost something and I don’t know what it is. I know I should be glad that the feelings of wanting to kill myself aren’t 24/7 like they used to be. Maybe I am missing it. I mean, I have felt like that for YEARS. And to go from that to nothing, well, is weird. I like to think that I turned a corner but yesterday when I woke up, I just wanted to be dead. Course this is coming after a bad pain night in which I wish I didn’t wake up. But after those thoughts passed, they didn’t linger. I didn’t harbor the thoughts or feelings. They just floated away and I got on with my day. Today I am feeling like I am stuck. I am stuck in that harbor with these thoughts and wondering if they will float away.

I have been up early. My mother woke me up early this morning, before her stinking alarm clock went off. She is now snoozing on the couch. She didn’t hear me go up and down the stairs. Pity. I could have called it payback.

I keep thinking of what next to write and I just don’t know. I know that this blog is like my online journal. But I don’t want this blog to be just about my every day struggles. Yes I have not showered in a few days time and I need one but that is the least of my worries in the midst of this low level depression that seems to be sucking the thoughts out of my head. I can’t seem to think with this type of depression. Like my other blog I wrote the other day, to me, my blogs lately have just been words on the screen.

My ankle is hurting so I doubt I will go out for a latte. Just getting my lunch was enough to push it on the edge. It feels like someone is trying to snap it in half. And any weight I put on it, make it worse. So now I am stuck in bed keeping my foot raised to keep it immobile as much as possible so I am not in pain. I am glad when I went out I got some snacks. I know I shouldn’t be having them because I am trying to watch my weight but my therapist seems to think that I am anorexic. We talked about it today and she just wants me to eat protein. Yesterday I had two eggs (one for breakfast, the other at dinner) and I was still hungry an hour later. I don’t know what is driving my appetite increase but it sucks. And I know that if I don’t keep a watch on it, I will turn into a cow. I am not skinny by any means of the word but I would like to get below what my weight is currently. But I think I am PMS’g so I bought some chocolate. Chocolate comes from a cocoa tree so therefore it is a plant. That is my rational for having some.

Because my ankle is now bothering me in the afternoon, I guess I should take something for the pain. But that means I will be a zombie or worse take a nap so I can wake up at 8 pm. I am trying my best to ignore it but it doesn’t want to be ignored. Dammit! I hate that. So much for thinking this will go away on its own. I’m off to listen to Lady A. Maybe their music will keep me calm and awake enough so I don’t take a nap.