Tag: chronic illness

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.

blah 2

by Midnight Demon, posted in Chronic pain, mental disorders, mental illness, mood disorders, psychache, suicide, suicide attempt, transgender, writing

Mood has shifted just a little bit but I still have not left the house for anything. I just feel like my world is coming to an end and there is nothing I can do about it. Least today the numbness wore off just a little bit to let some feelings in so I can write a bit.

Got a bunch of paperwork, one for the group therapy place and the other from my long term disability place. Each packet is like twenty pages. I have my work cut out for me. Though I hardly have the energy to do it. I still need to get my taxes done. I keep saying tomorrow and tomorrow comes and goes. I feel weighed down though I don’t know from what.

I stopped taking the birth control pill last night to hurry things up. I figure there is no point taking them for the rest of the week if I am just going to stop them anyway. I’m kind of scared because I don’t know what kind of havoc this is going to place on me mentally. So far there has been no change in my menses and thankfully I don’t have any cramps. But the wearing of female products I still killing me. I just have gotten so used to not having a menstrual cycle that now it just feels so overwhelming. It’s making me so depressed and suicidal that all I can think about is ending my life because I don’t want to go through with this. That is what my suicidality is truly about. Not being able to cope with my false identity. And I am really pissed off that no one really cares except for my therapist. She is kind of freaked out right now as my mood is unpredictable. I know my friend that I have been writing with is kind of worried too though she is pretending she is not. I just don’t have many people to talk to about this. I feel that it’s too much information or just to hard to try and explain.

I just don’t know if I will be ok during this period. I know my shrink is worried since my post the beginning of the week. I still want to cut but the feeling come and go. I haven’t yet but that doesn’t mean I won’t. I hate that I love walking about in t-shirts all the time. If I start wearing long sleeve shirts my family might notice something off. Cutting is a huge thing to cover up. I used to not care when I was a teen, but now that I am an adult it still is kind of hard to cover up when you have a 7 yr old that smells band aids a mile a way.

Ramblings 27

by Midnight Demon, posted in Chronic pain, medical, mood disorders, psychache, suicide attempt, writing

I was waiting at the bus stop today and four police cruisers stopped and pulled over in from of Citizen’s back. The supervisor went inside and then one of the employees locked the door. I recently got a funny text saying that every 15 mins a bank gets robbed. Maybe that was one of the banks. I don’t know. No swat team or other special police arrived while I was waiting for the bus. All the time though I was praying a stray bullet would hit me and kill me. Bad thoughts I know but I just couldn’t help but think it.

Met with my psychiatrist today. No med changes. Just keep doing what I have been doing. It’s like the Mary Chapin song, “Simple Life”. Shrink says see you next week. That is how I feel. I know she gets what I keep telling her every two weeks but sometimes I wish there was some thing more she could do. But there really isn’t and that is the frustrating part. These docs just expect you to live with your illness and if you can’t well then there is always the hospital to help you try. I really can’t stand it sometimes. I get angry with her though there is no reason to. We have exhausted all medications. The rest is up to day to day management and making sure I keep my end of the bargain which is actually taking my meds.

I’m still trying to work on this comparison paper that I hope to post soon. Thing is I am so stuck on it that I just can’t move forward on it and then I read some new study that has a new measurement so I am conflicted as to whether or not to include it. This paper is good but I just don’t know where to go with it anymore. It’s so frustrating.

The urges for cutting have been strong today. I am trying not to think about it because it would be very easy to give in. I have been playing the radio as a distraction and so far it has been working. I would rather plan my death but all I want to do is cut. Right now I am saving up money for a hotel room so I can get away one of these nights and be away for a while. I just need to get out of my house and into something else so I can think and maybe write a bit. I don’t know where I will go but maybe the Best Western or someplace like that. Just a place I can be truly alone without being hounded by the loud TV. Maybe stepping out of my environment will let me get out more and get my coffee and work on things in my head about what I need to do. I don’t know this is just an idea. The last time I tried this I came home everyday because I forgot one thing or another.

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.