Category: cauda equina syndrome

memories of the past

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, depression, mood disorders, physical pain, writing

It’s the beginning of February. January is now a thing of the past. It was a tough month to get through. I still am hormonal and don’t like it one bit. I never cry unless there is a good reason but lately everything makes me weepy.

February is not a month I enjoy either. It is an anniversary month of my CES, Cauda Equina Syndrome. I got it 12 years ago when I was twenty-five and it has messed up my life since then. (for story see https://midnightdemon.com/2012/12/21/my-ces-story/) I have made progress with it. I can walk without assistance but I need an AFO (ankle foot orthotic) to do so or I pull my muscle in my leg, causing me pain. I can’t stand too long or walk long distances like I used to before CES. And it sucks because I love to walk. Now I’m lucky if I can walk around the corner to Walgreens without feeling fatigued and in pain. I wish I could say that the bowel and bladder aspect is great but they have gotten worse over the years instead of better. I no longer trust farts. I have had too many accidents thinking it was air when in reality it was shit. To many CESers, it’s called Sharts. My bladder leaks when full until it registers that I have to go. I guess me wearing feminine product at this time is a good thing. I don’t have to worry about leaking into my underwear as there is a pad there. I mostly have to worry more when I go out.
The pain of living with CES is horrendous. But since I have been back on my mood stabilizer, the zings, burning, and zaps have been to a minimum. Except my leg pain has been there with it’s own twinges and pain. This is the type of pain that drives me nuts and when it continues longer than twenty-four hours, makes me suicidal. I have a high pain tolerance but after dealing with something painful for more than twenty-four hours it wears you out like the flu. I am on a ton of pain medication from anti-convulsants to gels to narcotics to deal with the pain. This combination seems to be working.
The New England weather also plays its part in driving pain levels through the roof. If the temperature drops or has a high between 20-30 degrees my spine will ache something awful. Yesterday was 50 degrees and today it is supposed to drop to 10 so I know I am going to be feeling it. Right now it’s 30 degrees out but feels like 13. That’s my hometown for you.

I hope this month doesn’t bring the flashbacks of 2001 with it. I really don’t want to go through that again. It was tough the first time around. But you never know with PTSD (post traumatic stress disorder) how you are going to react. You might be fine or you might be a basket case. Your nerves might be on edge all day. Luckily I don’t work where this all happened so it might be easier this year. But you would think that after ten years it wouldn’t affect you but it does. Just like in March I always remember the night I fell apart. Sometimes you are just stuck with the images in your head that you just can’t get out. You get sucked back into the past. And it’s an anxiety provoking experience. But I have learned a thing or two about grounding and staying in the present.

I have a week to try and not think about it. A week of not remember what it was like waiting in the ER, talking with the neurosurgeon resident, neurology resident, and neurology fellow about the seriousness of my condition and need for surgery all on being awake for 36 hours of being in pain and agony and no sleep. But when things were at the worst and it was 4 in the morning, I had enough of being nice guy and wanted to speak to my psychiatrist about being “competent” to sign a consent form for surgery. She explained the story that I had CES and needed surgery and not the three idiots that were standing in front of me. I quickly asked if the surgeon was board certified and found out he/she wasn’t so I said find me someone who is or I am not having the surgery. That’s when they called in a pituitary specialist to do my operation. Luckily I was ok but I developed a staph infection two weeks later and needed another surgery to clean it out. Which meant another week in the hospital. I’m getting anxious writing this so I am going to stop here for now. You have the CES story if you want more on what happened after this.

International calls and PTSD

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, chronic physical pain, depression, medical, mood disorders, physical pain, psychache, suicide, suicide attempt, writing

Had an interesting day today. I wanted to talk to my friend in England so I made the phone call, except I could only talk for 5 mins!! I was like WTF because I pay extra to be able to call internationally on my phone. SO I call sprint and everything seems to be in order on their end. The guy then transfers me to the international section of Sprint. Turns out that because my phone is a Google phone and Google voice is on, that was the problem, I think. I won’t be able to call my friend until tomorrow night to see if this works. This sucks but I have a therapy appt in a half hour so don’t want to be on the phone too long.

I rewarded myself with getting my Claddaugh ring fixed and sized the right size. I picked it up yesterday. Luckily it was just under $300 USD. The most I have ever spent on myself outside of electronics such as laptops. The reason it cost so much was because I had the shank fixed as well. I LOVE it! It fits so nice and I miss wearing a ring.

I have been stressed the past few days because of financial reasons. I have to call to work out a plan with my student loans before they garnish my SSD check. I am so worried they are going to leave me with nothing. I so wanted to save up for a car this year but doesn’t look like that is going to be likely. I need to be able to pay the cable bill, my mother for the mortgage, and my cell phone bill. I also NEED to have money for my “crack” Starbucks coffee but I can do without as I can go several days without needing it. But when I want it, I want it dammit. It is the only JOY I have in my life is that one cup of coffee a day.

I still have my fucking menses that are just driving me beserk. I was supposed to call the repro-endo doc today but never got the chance as I was lazy when I woke up this morning. It is still cold out, not as cold as it was yesterday but still cold and I wasn’t sure I wanted to go out. I had some mail to mail so I said the hell with it and went out. Sometime I just need to push myself. But while I was walking it felt like I was walking in mud. I hate that feeling more than anything. Some days I feel like I am light as air and other days I am walking with cement shoes on my feet. I don’t get it. I also had another damn problem with my fucking pain medication. Doc wrote for extra so in case I need them, I have them. Well the way he wrote it is only for a month supply only and the pharmacy won’t give me this extra! ARGH!!!! I am so fucking pissed off because last month he said he was going to change the prescription to 1-2 tabs a day and this month he didn’t. I am so pissed off right now. I just hope I don’t have any pain flair ups that necessitate me needing more than what I have. I am like so terrified of getting flare ups. It really activates my PTSD. I start having flashbacks of what it was like having CES all over again and then the surgery and all that I went through to get to where I am today. Not that I am 100% better, I am not. But at least I am not walking with a walker or cane all the time. It kills me when I see an old person with a walker when I am on the bus. It just reminds me how lucky I am that my doctors knew what I had. Some people that have CES or Cauda Equina Syndrome weren’t so lucky and have to use a cane or walker to get around. Some are worse off and can’t walk at all and need a wheelchair because their legs are so weak.

Whenever I get a pain flare up I tend to go into flashback mode. It is not a pleasant experience. I remember things that have happened in the past as if it were happening today. I get anxious and nervous. I start worrying. It is the worst feeling in the world. And then I want to get rid of the pain. If the pain meds don’t work, I usually want to cut. Cut off the affected limb so I am no longer in pain. Or just stab myself to relief the pain. I know that doesn’t make sense but it is what runs through my head during these times. It is awful. And I can’t usually move during these flare ups. I am incapacitated. I can just barely move enough to down some pills and hope it take away my misery. I hate being bedridden with this type of pain. I always keep my cell phone handy just in case I need to call someone and have them help me. Because my mother is deaf and with my closed bedroom door she is not going to hear me nor does she have the mobility to go up the stairs and help me, but at least she is someone I can call in case of emergency.

Insomnia caused by pain

by Midnight Demon, posted in cauda equina syndrome, CES

It’s almost 2 am and I still have not gone to bed nor do I think I will in the next hour. Pain is keeping me up and apparently I am not alone. My CES friends on Facebook and I have been chatting most of the night, not really complaining because we all know why we are up: PAIN. I find it sad that people with this condition lose sleep most of the night and most of the time because of PAIN. It sucks yet no one seems to care. We tell our doctors about our pain but they don’t really do anything about it. They might prescribe us sleep aids that don’t work or give us terrible side effects, such as sleep walking around the house, bumping into things as they go. Then they awake in the morning and have no idea why they have so many bruises on them. I have a friend in England who if she takes too much of sleep aids she hallucinates and has full fledged conversations and actions without her realizing it to other people and such. It scares her every time. And I don’t blame her. It sounds more terrifying than my voices.
This is what CES and CRPS does to you.  My left foot was cold as ice and swelled to the point of pain. So I put a sock on it but now the sock is bothering me, to the point of it feeling like it is strangling my ankle but my foot is still cold and I know the pain will get worse if I take it off. So I live with the strangling sensation. I got to take another dose of my medicine to calm down the pain because it’s been more than four hours since I last took it and I am still in pain. I should have been asleep at least three hours ago. But again, when the pain is stronger than the pain meds, you don’t get relief. The pain meds are not going to do anything for my foot feeling ice cold but at least it will hopefully space me out enough for me to go see Morpheus. I forgot what he looks like I haven’t seen him in so long. I think it’s funny that the god of dreams is called Morpheus and then you have morphine that is a high pain reliever drug. Maybe they are related. I don’t know. I have only been on morphine once after surgery and then had to be taken off because of bad side effects (it caused big time urine retention). And that was over a decade ago so I don’t remember how it made me feel. I know it took care of the pain like it was supposed to.
But I digress…I have my sleep machine on and I think I will get off of the laptop and try and go to sleep before it becomes six in the morning…

Ramblings 25

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, chronic physical pain, depression, medical, mental disorders, mental illness, mood disorders, physical pain, psychache, psychosis, suicide, suicide attempt, transgender, writing

Not been feeling good today. Back has been bothering me and so has my stomach. Seems like no matter what I eat lately, I get indigestion. I just took some Mylanta, the Walgreens equivalent as the real Mylanta hasn’t been on the market for quite sometime.

I got my haircut at my cousin’s house tonight. I had to get my haircut because it was getting too long. It’s been at least two months since my last cut. I like to keep my hair short and buzzed close at the sides and back. I wanted to take a shower afterwards but I just couldn’t bring myself to. I just washed my hair and that was it.

I was supposed to go out tonight but the Bruins are playing and I didn’t feel like going to a bar. I just don’t like loud places anyways.

Person from my long term disability company called me yesterday to check in. I don’t know what to say to her. I still have pain but it has been minimal because I no longer leave the house anymore. I might go out three days tops, and that is only if I really feel like going out for a coffee. Today I went out and now my ankle is thanking me with pain. I just can’t win. And what if she asks me about my mental health. I will just say yea I think about killing myself nearly everyday and wish every night before going to sleep that I don’t wake up. I just can’t face another day of nothingness. I haven’t been taking care of myself, more now so than before I got the disability. I shower maybe twice a week if that. I don’t do housework, though my mother now needs help with it. I’m not sure how I can help her as I can’t really be on my feet for too long.
It sucks having Complex Regional Pain Syndrome (CRPS). I’m lucky it likes the cold as the temperature has dropped to the twenties. I cannot tolerate the heat anymore. I like to be warm but not too warm. Sometimes I can’t even have the sheet on my feet/leg it bothers me so bad. But at least the swelling has gone down some though I still have a lump in my leg where it shouldn’t be. I so want to excise it. But I have been told that I might cause more damage if I excise than leaving it alone. I’m just glad that the voices haven’t been around telling me to excise it. I would have to go back to the hospital. I am taking my antipsychotic med. I have to take it every other day or else I become delusional and psychotic. It has been helping with the paranoia that I had when I was on a crowded bus or train. Now I can be around people without freaking out that they are going to kill me. How fun it is having Schizoaffective disorder or as my therapist calls it just bipolar disorder with psychosis. Apparently I don’t have the “positive” features of the Schizoaffective part.

I haven’t been hospitalized for almost six months. That’s good but I have been feeling like I should be in. I just can’t take living my life anymore but then I know I won’t really get the help I need. Most hospitals don’t have time for individual work and so lump you in with a group of treaters to talk for 15 minutes of the day. Then it’s back to the ward doing nothing but arts and crafts all fucking day, least until dinner time. The groups they have are useless. On a good day you might get psychotherapy group. I like that group, I can get something out of it. I should make an effort to go to an outpatient group therapy but of course I have no motivation or inclination to do so. I think it might break up the monotony of the day but that would mean leaving the house at least once a week. I was thinking of going to a LGBT group to be more comfortable. And maybe help with the transitioning of things but I don’t think you can do that in a group. I don’t know, maybe next week I will call. Or have my therapist call to find out more information about it. It will be local so I wouldn’t have to travel too far. I just am afraid I might not be able to walk to the center because it is too far from the T stop. There isn’t a bus that goes by and the closest train stop is more than a few blocks away. Difficult for someone with mobility issues. Course I could take a cab but that is just wasting money to me but maybe it is something to think about. But that is if I get “accepted” into the group to begin with.