Category: cauda equina syndrome

it’s 0230

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

It’s 0230

I woke up around 0230 and I can’t seem to get back to sleep. So I decided to write for a little while.

I made it through the night not drinking. I am really tired but I can’t seem to sleep. Avoiding alcohol was huge tonight. Though I think that if I did drink, I would still be sleeping. Oh well.

My ankle is hurting me so I have taken some pain pills. One more day before I see the new doc about this. I am not too hopeful he is going to find anything wrong with my ankle. But I am scared that I will be placed in a boot. Just in case, I am bringing my old one with me. You never know what he will do. I partly hope that he orders another MRI to see what is going on with my ankle, to make sure nothing has changed since the last one. I know I won’t be having an injection and I will make that clear. I just don’t believe in them and they only work 50% of the time so why chance it. I don’t like those odds. I rather be on oral steroids than have an injection. And I will bring that up to him as well. A friend of mine was telling me that I could have adhesions in the ankle after all this time. I don’t like that idea either. But we’ll see what this doc says. I just hope that it hurts enough when I see him otherwise, I am seeing him for not. I don’t want to be in excruciating pain, but just enough for him to see what I am going through. I have a “rest day” today though with me being up this early, I am not sure how much I will be resting. Sometimes I sleep a few hours and then I am up and others I am sleeping till noon.

I don’t have new answers for the doc. Just the same, single question, “what is wrong with it”? Three years this has been going on and three years, no one can give me a direct answer. If it was a case of tendonitis, I have done everything to make the swelling go down and yet soon as I move it, it flares up again. I can’t be immobile. I also can’t run the risk of wearing a boot around the house for fear of falling down the stairs. Even without the boot, I run the risk of falling because I don’t know where my feet are. There have been a couple of time in the last few weeks where I missed a step or over shot a step and nearly toppled over. If I wasn’t hanging on to the banister, I surely would have fallen. That is the problem with CES, not knowing where your feet are. I am usually good about where they are but when I am tired or when I just wake up and need to go to the bathroom, that “sense” or mindfulness is not always there. My bladder and holding the contents in seem to take priority. Oh the joys of CES, Cauda Equina Syndrome. It messes with your proprioception (where things are in space relation) of things. I have this for a long time. It hasn’t gotten better. I just compensate for it really well. But throw in fatigue and that compensation is out the window.

Having a huge boot on my foot won’t help the proprioception much. It will actually make things worse because I won’t be able to feel my foot. Hence why I do not want another boot. I hope I am getting ahead of myself. Thinking of all the possibilities that he could do. I could be placed in a cast. I have before to be kept immobile. I am not working so that doesn’t see like a big deal. When I was working it was a big deal because I had to get around the place. My boss yelled at me because I had to call out but then I showed him the big brace I was wearing and that quieted him down some. I understand that you don’t want your best employees to call out, but when they can’t walk around the lab, they are pretty much useless, especially when a doctor tells you to stay off your foot for twenty-four hours.

All these things can happen. Or nothing at all. Less than 24 hours to find out what the verdict will be. And hopefully, my anxiety will be less.

Cocktails

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

Cocktails

Lately I have started drinking again. Nothing major, just a shot of gin here and there, but the last few nights I have been wanting more than that. I actually have been craving the alcohol. I have been a binge drinker in the past so I am trying to stop it but I don’t think I can. And with the amount of pain meds I take, drinking that hard would be a disaster.

I have had a hell of a day. I really need to shower because not only did I crap myself, I also leaked. Fun. I swear next week I am getting the damn diapers so I don’t have to worry about soiling my underwear anymore. Oh and the weather decided to be back up to almost 80 and be muggy. I thought we were done with this shit. So I guess it was good I didn’t shower this morning like I wanted to because I would have to shower again tonight. I am waiting for my pain meds to kick in so I can stand long enough to do this task.

I had to deal with my father today, which is mostly the reason I drink. He just brings out the best of me because I have no other outlet. Today I spent all morning and most of the afternoon waiting for the stupid visiting nurse to deal with him. The nurse on Sunday got all his fucking meds wrong. What a fucking airhead. And today’s nurse had to look at all the bottles because I could be lying. No, I know what my father is taking, thank you very much. I go to each and every one of his medical appointments. I am his “secretary” when it comes to his medical stuff. Thing is, I am supposed to schedule his PCP appointment some how in the next two weeks and to fill him in on what has been going on. Yea, like I don’t have my own medical drama going on. Because I forgot and my app remembered, I didn’t take my blood pressure meds this morning. I didn’t think I was going to be all fucking day with this man and his stories. I spent the better part of my life with him and now as an adult, I realize I don’t have to have him in my life, but yet he is still there. Why I don’t know. Guilt is one reason. Responsibility is the other. And being the oldest, it falls on my shoulders. Today I was tested and tried. And that gin that I have been staring at since I got home is calling my name.

So I called my therapist and told her the pickle I am in. She flipped out on me. She didn’t like the thoughts of my pain meds being mixed with alcohol of any kind. I got reprimanded. Hell, I even got the don’t take any of my pain meds lecture. That is when I zoned out on her. I need my pain meds if I am to survive in this world. And when my ankle was telling me to fuck off today, I had to take something for it. Now it is a little bit more happy so I can possibly take a shower today and get out of the stinking clothes that I am in. My father made peppers and eggs and the smell got into my clothes. It is making my stomach do flip flops, which it has been doing all day because I got a migraine. I should have known today was going to be a bad day when I started gagging when I was at the bus stop this morning. And the coffee didn’t help me much. It helped with the headache and drowsiness, but did little to calm my stomach.

I am sure that gin is not going to help my stomach either. I hope tonight I can keep my word to my therapist that I won’t have a sip. But it does help me sleep good so I am weighing things in. Beside yell at me, there is nothing more she can do. I don’t know why my father aggravates me so much. Even at his medical appointment, he had to go on and on about his work history. The doctor, who is a really nice guy, was obliging to his stories that I have heard only a million times.

Now my mother is making broccoli rabi. I cannot stand the smell or taste of this damn vegetable. Maybe I will have just one sip of gin to calm the damn nerves…

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.