Tag: cauda equina syndrome

distress intolerance

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

Tolerating distress

I have been in a bad mood for the past hour. I have been in wicked bad pain and it has me thinking of ending my life once again. It is after midnight my time and there is no one that I can really call that will really understand what it is I am going through. I tried reaching out to a few people but as it is a late hour, I got no where.

Then I thought about all the DBT bullshit that I have been through and thought I am doing this wrong. What if I am supposed to be feeling the distress as much as it is intolerateable? I don’t know if that is a word but it is the closest thing that I can think of to describe what I am feeling. The thinking is that if you tolerate the feelings you are better off. I am not sure how. Feeling this way sucks and all I want to do is get rid of it. I mean I am feeling this way only because my foot is killing me and there is nothing I can do except wait for the pain medication to kick in and give me some relief. Listening to my favorite playlist is helping me. I listened to Laura Branigan and her voice always soothes me. I thought about writing in my journal but I am not up to putting pen to paper just yet.

My AAS blog was just published and it started off with today I am in distress because I wanted to kill myself. Why am I still alive when I want so badly to be dead. I just can’t go through with it and it is killing me, being alive, and suffering so much. I know that if I were a dog or cat, I would have been let down already. Funny how we are more humane to animals than we are to humans. The reasons are many and I won’t get into it because I am just not sure it will help me calm down. Anytime I talk about hurting myself I get riled up. And when you throw in that humans suffer because it is, well, expected, it just pisses me off. Would you expect a person dying of cancer to suffer?? Or Parkinson’s disease or any other terminal illness? That is what irks me so much, I have a non-terminal illness and am expected to suffer and go about my life like it is not weighing me down. I hate being like this. I cannot tolerate it. So the hell with the distress intolerance bullshit. It is not helping me just making me wish that I was dead all the more.

traffic and therapy

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

Today I realized the reason why I like talking on the phone with my therapist than seeing her in person: TRAFFIC! I left my house at ten o’clock and literally got there around 12:30. Normally I get there around noon but the traffic when I got to route nine, well, was just horrible. I don’t know why they have traffic cops at a construction site when they DO NOT DIRECT TRAFFIC!! There was at least a three mile back up and they were just sitting in their cars watching! I couldn’t believe it. But then it is typical of these guys. I don’t know what they are supposed to do, really, other than get paid overtime with our tax dollars for doing nothing. I want that kind of job.

My foot is better today, though I didn’t think I would be able to walk down the street. Half way down the block I needed to walk to get to the bus stop, my ankle started hurting really bad. It is still throbbing and I can’t take anything for it because I still need to pick up my sister as I have her car.

I was proud of myself today as I know my trucks. There was an F350 behind me on the way home and I knew that it was just by looking at the grille of the car. I love the Ford trucks. I fell in love when my friend’s stepdad picked us up at the airport when I first visited his parents. We spent a good amount of time in the truck as we had a long drive from Omaha to his hometown of Sargeant. The ride was nice and roomy, my first time in a truck and I was in love! I always wanted to own one but I don’t think I can drive one. I have a hard time with perception and am afraid of side swiping another car. That is why I am afraid of driving my bro-in-law’s jeep cheroke. It is a wide vehicle and new so I don’t want to damage it. I am not saying I am a horrible driver, I am not, but if something scares me I tend to stay away from it.

My therapist would call that trauma. We talked about that today with that weird dream that I had about my back surgery. I dreamt about it a few days after I got discharged from the hospital. I still have flashbacks of everything, from the time I was told I had CES again to getting admitted the next night and then surgery the next morning. I remember waking up with my left leg feeling weird. I thought it was just post-op stuff but it turned out to be a missing disc fragment was imbedded on my nerve root. I lost total feeling of it. I had no strength in it. I couldn’t lift it up if you paid me a million dollars, it was that weak. It took me a month to regain strength and another four months of physical therapy to get back to my baseline. I shopped around for a physical therapist that had experience in nerve injury and cauda equina syndrome. I didn’t go to the Spaulding rehab because 1) they were expensive and 2) they were not willing to work with me. I knew that if I did go with them, they would want to do things their way instead of what was right for me. I found someone at a local hospital rehab center that helped me get back to where I was before surgery and then a little more. I had to fight for the extra sessions and have my surgeon, then my primary care doc order physical therapy because I did not want to go through what I went through the first time I got this bloody condition, which was just surgery over, care ends too. I still had foot drop in my left foot that took months to regain strength the first go round. I wasn’t going to let that happen with my entire left leg.

Turns out that no matter what I did, this stupid, fucking condition ended up disabling me anyways. I still ended up with an AFO (ankle foot orthotic) for my left foot. I still end up with panic when my foot flares up in pain and I think that CES is going to happen again. No matter how much time has passed, and it has been years, I am always going to have that trigger soon as I can no longer move my toes because of inflammation/pain. And because I still have a fucked up spine nice and full of herniated discs, there is a chance I will end up with another diagnosis of CES. I fear that if I have to have another back surgery, I will need a fusion. If that happens, I will never be able to work again. As it is, I can’t walk more than a few blocks and stand for more than twenty minutes. The thing that I have to be aware of is trying to lose weight, which is tricky and wicked hard. But one doc told me that even if I weighed eighty pounds, I still would have a messed up spine. I just have to watch what I lift, making sure to do it properly, with the legs and not the back. But I don’t do much lifting of anything other than my Gatorade bottles. My biggest fear is getting rear ended by another car. That will hurt!

broken sleep and pain

by Midnight Demon, posted in chronic physical pain, depression

My manuscript was delivered earlier today, early enough that I could go out for my coffee. I had wanted to stay in today and just rest but I got restless. Now my ankle is screaming at me. I am stupid sometimes. I think I can just go through my routine of taking the bus and stuff when last night I woke up three thirty in the morning because of pain and then fell back to sleep at six. I woke up around ten-thirty. So I had broken sleep and pain to warn me not to go out today.

I didn’t know what to do with the manuscript so I just punched holes in it so I could place it in a binder. I took one look at it and got overwhelmed. But then I am getting overwhelmed with everything lately. I think I just got to stick with my blog as that is what makes me happy. I don’t know about this other project my friend has cooked up. I want to help her out and stuff but I think me working on my book and then her project is too much for me. And her piece is just as emotionally exhausting because it centers around my suicidality over the last few months.

I was in the middle of an email to her today as I was coming home when this guy who I can tell has mental issues just came up with me and started a conversation with me about clothing and buying t-shirts at Walgreens because they were cheaper than elsewhere. I was like ok. Then he kept on going on and on and I was like dude, I need to finish this. I had my headphones back in my ears, was looking down at my phone, and this guy was still trying to have a conversation with me. Shit. He was harmless and stuff but he kept on getting closer to me, invading my personal space with every new conversation so that is when I told him I had to finish the email…which by then I totally forgot what my train of thoughts were. That pissed me off. I hate it when someone interrupts me when I am writing. Even my phone decides to interrupt me soon as I open Word. It will be quiet the whole time I am on Facebook but soon as Word is open, texts and emails start coming in and I am like WTF. So now I just turn off the sound while I am working.

Speaking of working, my niece wanted to me to watch Cinderella with her but I had to get what I wrote up in Starbucks in a word document before I totally got exhausted and doped up on my pain meds. I knew the time it takes for the pain to get jacked up and I would have to take something is limited so wanted to get it done before I was in Dopey Land. When I told her I couldn’t because I had work to do, she yelled out, “you have a job”?? I told her yes, I do. I didn’t tell her what, as technically I don’t but I am sick of just saying that I am disabled. And I am a writer now so might as well use that title. But my mother was sitting right next to her and when my niece screamed out those words, my mother heard it, then asked me to clarify. I was like, oh shit! Now what do I say?? I can’t fib to my mother. So I just said that I had to type and made the typing motion with my fingers. No one knows what I do during the day. And it is not like I am getting paid to write my blog or my book or help my friend with her projects. They don’t know how many journals I have filled since being out of work. But my niece struck a cord with me, like I should be working but I am not. And it hurts. I still am dealing with the grief of not working and there goes my eight year old niece stating the obvious. I just feel like a loser.

I have to send my baby (laptop) back to Dell because of the high pitched noise. It is totally deafening my senses when it goes off and literally drives me berserk. It’s not too noticeable when I am playing music but when I am not, holy crap is it loud. And I can only hear it in my left ear because my right has high pitch deafness. The buzzing in my brain goes away when I block my left ear. I might have to use my older laptop until I send this one away but the thing weighs more than this one and gets hot after a while. I am just afraid that I might throw my back out while shuffling it around my bed.

I still have been under the blue moon. As I was walking home, I got struck with this heavy sadness that just froze my chest. It felt like this huge weight was on my chest and I couldn’t breathe. I swear the black clouds are still following me around and I am starting to feel hopeless that they will ever go away again. I know it is that time of the year that I always get more depressed than my usual. It always starts mid-September and won’t relent until sometime in February. I call it baseball depressive disorder because it always co-insides with the end of baseball season and doesn’t relent until spring training. I just hate feeling this way because even though I know it will pass, I just don’t think it will. I start getting wicked hopeless and as that deepens, my sadness just gets worse. Then the suicidal feelings increase and by December I am wondering why I am continue to live when I promised myself it was all going to be over with. I might do it, just because. I so just don’t want to live anymore. I hate feeling trapped into living because of others. It is no way to live. But yet I continue my existence because of others, because that is the type of person I am. And I hate myself for it. I really do.

loss of self

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

Today I broached the subject of grief with my therapist. She hasn’t received her packet of letters that describes my grief and how I think I should address it. I couldn’t bring myself to tell her that I think the reason for my craziness the last few months has to do with my grief and not dealing with it. Course, I didn’t think much of it until I asked if grief can cause psychosis. Then I just shut down. And thank god, it was the end of session. She wanted to see me tomorrow but I told her Tuesday was fine. It will give me more time to think about how to approach this.

She encouraged me to write about this stuff and how I am thinking about it but I don’t know how. Just thinking about my losses just makes me extremely sad. It’s like knocking the wind out of me. I mean, I used to be able to work two friggen jobs and now I can’t even work one. I was stable enough to work in one job for fourteen years and then I messed it up because my foot got messed up. I don’t know if I could work again at the same job. I would like to. But I can’t be all running around like I used to. Thing is, being a lab assistant, you sometimes have to do phlebotomy (draw blood) and I was never keen on drawing blood. Even the easiest of veins I blew and I don’t want to go back to it ever again. I was lucky my department didn’t have to do that. There was a separate department for blood draws.

It still hurts that after fourteen years of service I was just not accommodated by my job to do my job. It really hurts. I never told anyone how bad it is losing my job. Even though it has been almost a year and a half now. It also sucks I can’t do my other job of driving around Boston picking up samples because my driving record got messed up. I got a speeding ticket one morning because I was too sleepy to notice I was over the speed limit. But a State trooper noticed and I got fined. Then because I couldn’t pay the fine, my license got suspended. It took me almost a year to get it all cleared up. But it is going to take a while for me to have a “good” driving record again. And that kills me. I know it doesn’t matter now because by the time I have a car of my own again, I will be “good” again. But the fact that I can’t get a Zipcar to have some independence just kills me. I can borrow my sister’s car to go places but mostly her husband takes it and I hate driving the truck. I know I should conquer my fears and learn to get used to it but I have a peripheral defect and I am just afraid I am going to sideswipe someone or something. And I HATE backing up in the drive way because my sense is not great. Even with the car I hate it, especially when there is a car parked across my driveway.

I really have other deep losses such as the loss of myself and the loss of my abilities. Walking used to be my joy. I was able to walk long distances and think nothing of it. It never bothered me. Sometimes it did when I used to get Charlie horses if I walked too far and didn’t drink enough. But other than that, I really enjoyed walking to the train station which is about a mile away. I used to do the Walk for Hunger, which is a 20 mile walk around Boston. Haven’t done that in years but I am determined to do it one year, long as I go slow. I will have to do mega training to work up to it as right now my limit is four blocks .

Then I have the loss of my bodily functions. I never thought that at the age of 36/37 I would have to wear diapers to events that last longer than a few hours. This is because I no longer get the signals to my brain that my bladder is full. Once I am full, I start leaking excess until I do go. It isn’t until I feel wet do I ask myself the last time I went potty. The number 2’s are a different story. I can’t feel myself went I go unless my stools are hard. If you are the squeamish type, I would stop reading right now. This could be disgusting to you. If my stools are soft I don’t feel them as they move out. If I have the runs, I can quickly have an accident as I can’t hold them long, though I have been lucky the last few times in holding them in by not letting loose my farts. If I lose control of my farts, I lose control of my stool and well, you got it. A nice number 2 in the pants. It has only happened to me a few times, the worse was when I took too much fiber pills and thought I was farting but really I was shitting myself. That was a lesson learned. I usually take senna because I find that it is the only thing that makes me go without too much trouble. Too much however can cause very bad cramps and possible accidents. Every time I have an accident or have skid marks because I didn’t wipe myself well enough, I lose it. I really go into a darker place and usually want to kill myself. Same with when I have a urine accident but I am getting used to them. Having stool in my pants is a real downer. And I don’t think anyone can get used to that. It makes you feel so small. And people take it for granted that their bodies will tell them these things. My body, because of the nerve damage, no longer does. And it is a HUGE loss. Again, not something I have dealt with nor wanted to.

Then, of course, there is the loss of where I should be now had my mental illness not shut me down and forced me to stop school once again. I call this the “if onlys”, such as if only I didn’t have a psychotic breakdown in 2008, how different my life would have been. If only I went to a four year school instead of getting just my Associate’s degree I would be better off now than I was back then. If only I had decided to work part time and go to school full time would I have been better mentally than I am now. Or would the financial strain of not working been too much? Or would the strain of going to college full time really be my downfall? Either way, I can’t change any of it, but it is a HUGE loss to me not being able to go back because I fucked up. I should have just made a simple phone call to put my loans into deferment and I would have been able to go back now that I am just sitting on my ass doing nothing most days. I think me not going to back to college is the most hurtful to me because I loved my studies, didn’t matter what they were. I just loved being in academia. Psychology is really my thing. And I know I could have been a good therapist. But I don’t think those dreams are ever going to come true. Maybe if I win the lottery.

Then you take into account all the times I have been suicidal. It is a loss because I am still having to piece back my life and I don’t like it. I rather be pushing up daisies for eternity. But as past blogs have talked about, I can’t kill myself anymore than I can make a gourmet dinner. AND it hurts to go on living like this.