Tag: cauda equina syndrome

Latte Fail

by Midnight Demon, posted in chronic physical pain, depression, mood disorders

Latte fail

I started the day very early, again. I woke up at 0530. I stayed in bed till around 7ish when I had some breakfast, hoping that it would welcome me back to sleep. Nope. I had weird dreams instead. I swear it was at 45 min intervals that I was awoken by these disturbing dreams. I think I rather have nightmares than dreams that make no sense and that I can’t remember.

I forgot to charge my phone again last night. I think I am testing the battery power throughout the night. If it was fully charged, I probably would have gone out of the house around 8 for my coffee rather than two hours later when I really didn’t feel like doing squat. But I made it out of the house and got my latte. Unfortunately, with the caffeinating, it didn’t wake me up. I am still waiting for it to wake me up, three hours later. I wrote in my journal, but it was broken up my the distraction of Twitter and Facebook. I heard through Gates McFadden that the US Supreme court rejected the appeals for gay marriage. YAY for gay marriage. She said it was the start of a beautiful day. Maybe for her. I am still waiting to feel some good. After stinking up my clothes of coffee scent, I left for the next bus. My mother calls me one stop before the one I get off. She tells me to take the chicken out of the freezer. Soon as I open the freezer door, blueberries make a brake for it. Yup, floor covered in blueberries because they were not in the right container for fucking freezing. I don’t know why my mother freezes fruit when it takes her months to make something. It just nose dives to the floor every time we open the freezer door. Pissed me off. And she has gone shopping and I am going to have to get the bags because my lazy cousin is “tired”. Well I am too and in pain so I beat your ass.

Just am in an annoyed kind of mood, can’t you tell? I should have called the junk car people today but I didn’t. That will hopefully happen tomorrow. I got to get the car out of here before the colder weather comes and then I will have to wait till spring. My brother in law will not be happy if it stays in the driveway another winter. If you can give out procrastination badges, I win. This car has been there for more than two years. It is falling apart. My biggest fear is that the guy will come, see the car, and walk away like he doesn’t know what I am talking about. The bumper has given way and you can no longer see the exhaust pipe. The shocks finally gave way. It is a total junk car.

I am not feeling good mentally. I put in a text to my therapist to see if I can see her today but I haven’t heard back. I might call her in a little bit to ask for a check in. I really need it. I feel like I am falling apart like the car in my driveway. My cousin (lazy one) just asked me how I was doing. I told him lousy. He doesn’t get the pain that I get from going up and down two flights of stairs. There is nothing physically wrong with him so why the fuck can’t he take the stuff up the stairs?? Drives me fucking nuts.

A bad night followed by a tiring Sunday

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

A bad night followed by a tiring Sunday

I had a bad night of pain last night. I was beside myself. I felt like going to the emergency room but I didn’t know which one would be best for me. It was after 10 pm so it would be crazy hour with drunks coming in and such. Or maybe it would be too early for them. I don’t know. I never went. I just took a strong pain medication and tried my best to sleep.

I was in pain and wanted to kill myself and I wanted to kill myself because I was in horrible pain. I got away this night unscathed. But I am wicked tired today. It hurts to think. I woke up around 0630. I could make a pot if I really wanted to but I think I will pass. I have been trying distraction as best as I can but it’s not working for me anymore. I am listening to music but it doesn’t help my mood. Nothing is helping. I am hearing voices again. They started off as British but now they are just remnants of conversations I have had with my father. It is very disturbing. Hopefully a little perphenazine will work.

Even if I did know what to do last night, I doubt my needs would have been met. That is if I knew what they were. I felt like calling my psychiatrist and asking her what to do. I just was in a bad place and pain was the chief cause of it all. I felt like I needed to talk to someone, someone that knew what I was going through and would be an understanding ear. There are few of those around on a Saturday night. My one blogger friend has started dating so she wasn’t available. My therapist certainly wasn’t available. I wasn’t having a neurological emergency so my neurologist was out. It was a combination of it being a med/psych emergency. And who really deals with that?? I wasn’t staring down a bottle of pills. I wasn’t contemplating hanging myself. I just didn’t want to be anymore. The pain and the “demons’ had collided. Not even blogging was helping because I couldn’t think of what to write. I was in a tough spot and needed someone to talk to that knew about chronic physical pain and being suicidal.
Right now my ankle is killing me. I can barely move it without pain. And I haven’t done anything. I guess two days straight of activity is a no-no. I wanted to change my sheets today but that doesn’t seem to be in the works for today. My mother is hurting too. She wanted to clean the kitchen floor until her back went out on her. I swear it is the weather that is causing most of our pain. I suppose I should call my father and see how he is doing but I really don’t feel like it.

But I finally found something to control my appetite. Kellogg’s mini frosted shredded wheat. I love it. And it has fiber so I have been going a little more regularly without pills, which is a bonus. Any thing that gets my bowels moving without a pill is nice. Now if only I can psych myself up to take a shower, that would be nice. I have gone almost a week without taking one. I think Tuesday night was the last time I took one, but don’t quote me on that. This sucks. I just took a couple of pain pills so I can take a shower. This is what my life has become and no one gets it. It is so frustrating to try and explain what I am going through and be heard. Sure my therapist gets it, but there is more worry in her voice than understanding. She will just go off about how many spoons I don’t have when all I want her to do is listen to me, not tell me what I already know.

The temp dropped over night. There is a chill in the air that wasn’t there yesterday. My mother had the damn kitchen door open when I got up to have breakfast this morning. I was freezing and I am usually not one to complain about the cold. But I was grumpy because I was awake and I was hungry. It was bad enough that I had to wear my slippers to go down the stairs. I really need to take a shower today. I think it will help me feel a little bit better. But it might cause me more pain and that is what I am afraid of.

Nobody Knows…

by Midnight Demon, posted in cauda equina syndrome, depression, mood disorders

Nobody knows…

Today was a horrific day. I spent the morning at the hospital with my dad, having his testing done. Apparently they found something and it had to get checked out. Like today. Not tomorrow or next week. Today! I was so pissed. But luckily, I was able to squeeze in my therapy appointment, though we again just talked about how my father takes up so much of my time and that it is not appreciated, at all. And I still got to finagle getting medical records from one hospital to another. I don’t know how I am going to do this, as I know my father needs to sign his release form. I can’t do it. It’s not my records. Which means I got to drag him to get the forms released. And I have a week to do this. Talk about pressure. But I think I can talk my sister into it. He has another lovely appointment on Tuesday and I don’t have to be apart of it. I just get to hear about it.

I had about a half hour before I had to go to South Station to meet up with my friends for dinner. It was a race to the bathroom soon as I got off the bus. Both bowels and bladder decided they were going to race me to the bathroom. I lost, they won, though I didn’t realize it. I thought I had just peed myself but the second race on the way home proved that I was wrong. I changed my underwear, washed up, and now I am typing this blog because no one will fucking care that I crapped and peed my pants. The only ones that will understand are those that suffer from CES, or some other neurological condition that affects the bowels and bladder. I think MS might affect both, but I am not sure.

Nobody understands what I go through on a daily basis. No one stops and thinks that I am disabled. No one enters their mind that I might be in too much pain today to do something. Nope, they just want ALL of me there, right now, right away. Even my therapist doesn’t get it. She could have cancelled the appointment today but instead she kept it. It would have been a weight off my mind so that I didn’t have finagle the bagel to find a spot to talk to my therapist, and then keep my voice low so that people are not hearing what I am saying. I don’t know what I wanted to talk about with my therapist but I know I didn’t want to talk about my father and how he is making me lose spoons I don’t have.

I should have canceled my dinner plans but I am stubborn and I wanted to see my friends’ kids. I haven’t seen them since January. Now I am hurting and frankly, I don’t care. I am not doing a damn thing tomorrow except to eat my fettucine alfredo with butternut squash and chicken. I also have bruchetta and garlic breadsticks. I will have a good lunch tomorrow. And besides, if I didn’t go out, I would have missed the free pasta and tomato sauce they were giving out when you exited the train station. My mother is going to like that, the pasta anyway. A free box of 32 oz. will last us a good while.

But nobody knows that I lost all my spoons today and more that I cannot reclaim. I am in the negative and even though tomorrow I might be eating a good meal, I won’t be able to do much else. Which further adds to my depression. Nobody will know that I messed my pants. Nobody will know that on the way home, I almost couldn’t make the last block. My leg just had enough. But like everything else in my life, everything gets dumped on me when I can barely lift it. I am just so tired of it all. I am tired of crapping and peeing my pants. I am sick that I have to wear diapers if I want to go out of the house for more than 4 hours. And I don’t know where I am going to the money for diapers. It’s not in my budget. I still have two medications I need and I don’t know where I am going to get the money for them.

Nobody cares that my blog can be crap at times, that my writing is just isn’t good enough (by my standards). I am just sick of all the running around and not being appreciated for it. I am sick of being in horrible pain and not having a rest day in between. I am sick of being in pain, period! And nobody cares.

Totally out of spoons

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

Totally out of spoons

I am so spent. I did too much today and now I am paying for it. I just had my meal, a bowl of cereal. Now I can hopefully relax as I am hurting.

I had to do some stuff for my father, surprised? Tomorrow I get to do the same things I did today, minus going to his house. He must have called me like 6 times today. He is in pain and the medication doesn’t seem to be working. I told him he can take two medication but he refused. Let him be in pain then. I am tired of dealing with him today. Tomorrow he will be seen by his doctor and hopefully they can give him stronger pain medication. I don’t care about that right now.

I have to conserve my energy (spoons). I have a long day tomorrow as I have to deal with my father and then I will be going out to dinner with some friends in the evening. At noon, I am supposed to have therapy but I am not sure I will be home for that. I haven’t quite decided what I am going to do after my father’s appointment. I know I probably will go home so I can rest, but it all depends on what time the appointment ends. I hope that we aren’t there all morning. That will just suck.

I was not in a private space to really talk to my therapist today. She kept going on about how many spoons I have lost even before I went to see my father today. I had a productive morning, all with no coffee on board. I was hoping to have a cup when I got to Starbucks. But for whatever reason, the coffee sucked today, even the blonde roast didn’t taste right. I wasted my money today for the first time. I am so disappointed. I hope tomorrow is better, I am going to need the coffee to get me through the day.

My therapist was funny today. She called me a geek and I think complimented me on being very “Bostonian”. LOL I guess I said “wicked” too much today and it just got to her. I was glad for the light conversation, as like I said, I wasn’t in a private space so talking about my suicidality or self harm urges were out. I actually haven’t had any urges to cut since Sunday. We however briefly, talked about it today. I some how developed a pimple on one of my scars and it was triggering me to cut. It was very itchy and course, when I popped it, made it really angry. I really thought about cutting for the first time in months. I kept thinking about how to make the scar “better”. I know this doesn’t make sense, but it really was how I was thinking that day. I almost had to call her Sunday to talk me out of it or to contract for safety.

I am looking forward to going out to dinner with my friends tomorrow. I am going to go even if it will kill me. I will just bring my cane and I should be fine. We are going to go to one of my favorite restaurants so I really don’t want to miss it. Plus, I haven’t seen my friends all year because of my stinking pain. I don’t see them often. The last two times we were supposed to meet, I couldn’t go because I was on bed rest. I really am looking forward to seeing them, we have a lot of laughs. So even though it will hurt me, I am going to see them anyways. I will take my pain medication with me just so that I can mingle. Luckily, there won’t be too much walking involved once we get there. My friends live south of Boston, almost near the Rhode Island border. I have to take the commuter rail to get there. I am going with my friend, who cordially invited me and will be treating us to dinner. He does this at least a few times a year, usually when it is my friends’ birthday. He is nice like that.

I think I am going to have to take a strong medication to kill this pain that I am in. I have been at an 8 on a scale of 1-10 for the past hour or so and obviously, my regular pain meds aren’t touching it. I didn’t think they would. I just did too much today. I was on my feet for more than 20 minutes, I walked long distances, and generally ran out of spoons by the time I even got to my father’s house. And there was one errand that I forgot to do, and that was mailing my therapist’s letters. Totally forgot to grab the envelope before leaving and didn’t remember until I got to Starbucks. I’ll have to remember tomorrow to do it because the rest of the week I will not be leaving the house. I need to recharge my spoon counts.