Tag: mental pain

not good enough

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

Not good enough

I had a difficult session with my therapist. She wanted to know why I didn’t text her when I was feeling suicidal thoughts but did to let her know I was in the ED. She said that I was “struggling” and thing is I really am not. I don’t know what the disconnect is. She keeps assuming things instead of asking how things are. Then she asked what I was going to do when I feel suicidal again and I told her I will manage. She said that wasn’t good enough. I got so frustrated at this point and I got mad. I don’t know what she wants from me. Her response always requires a different answer and I don’t have time to figure it out. I just try and figure things out as things come at me. I feel differently about things. I never feel the same about things. I might want to listen to music by someone specific or I might just want some group with no particular rhyme or reason. I might not want to listen to music. I might want to write instead. It all depends on the level of perturbation I am feeling that will drive what I do to cope. Last resorts will be to call a hotline.

It really bothered me that my therapist said this level of coping wasn’t good enough. I don’t know what she was looking for. I try and do the best I can when I am hit with the darkness and if that isn’t good enough, well, fuck you. I have decided that I am not going to text my therapist anymore. She doesn’t want me to anyways unless it is appointment related. I don’t know why I bother when it isn’t what she wants so I just won’t do it anymore.

Lazy Sunday

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

Lazy Sunday

I have done nothing because there has been nothing to do without complete exhaustion. I made dinner and I am so tired it isn’t funny. I just heated some ribs and mashed potatoes then cleaned up afterwards so I wouldn’t hear the tyrant bitch. It was enough to get me worked up and feel worse than I was. I don’t know why I am so damn tired all the time. I don’t know if it is because my blood counts are still low. I just feel like crap.

I wrote an email to a friend and tried reading my book. It has been hard reading Marsha Linehan’s book as there are so many parallels between her illness and my own. The feelings are palpable and it stirs up stuff. She talked about finding god and being transformed when she found him. I can understand that. Lots of people do when their faith is strong enough or so I hear. I am glad she found him so she could move on with the demons of her life and work on “getting people out of hell”. She writes this so many times. I read some of the reviews for the book and there was a lot of complaints about this. I don’t mind it though as it is her life’s work and her book. She can write it as many times as she wants. It is how she developed a brilliant therapy that helped saved millions of lives.

Today has been a cool day so I have the AC off. I don’t remember what the weather is going to be like tomorrow. There was talk of thunderstorms but I haven’t seen the latest reports about this. It might have changed course or something. I will check it before bed. I am just worried about rain coming through the AC vent as it is open because my brother in law broke it. I have tape on it but that won’t hold much if the rain is heavy. It is windy out but not gusty.

I’ve been listening to Terri Clark and Mary Chapin Carpenter. I haven’t been on social media much. It is too upsetting for me right now. I have been trying to just rest like I should be with this stupid fluid build up. I don’t know when I will be having surgery. I am guessing sometime next week or the week after. I am kind of scared of the recovery as this first time was a doozy. It has been 10 weeks since my surgery and I still feel so tired and exhausted with doing anything. I just want to nap all the time. Yesterday I slept most of the day. I can’t stand how my stamina is so low. I am not sure what will increase it. I guess I need to do more but I don’t want the leak to get worse. I am on my last day of steroids. I hope the headaches don’t come back when I completely stop them. I don’t like the headaches as they just make me tired.

life worth living, the book

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

Life worth living, the book

I have been reading Marsha Linehan’s memoir, Building a life worth living. Today I learned something that is spot on with how I am. I have what is known as “apparent competence”. It is when you basically show that you are functioning but inside you are dying from pain. I love this term and I highlighted it. I think I am going to learn from this book what I haven’t been able to in others and that is to know myself better. Dr. Linehan’s life and mine is very different but we suffered the same kind of pain that made us want to end our life. I am still thinking of ending my life while she has moved on. I just can’t seem to do that. I think if I didn’t have chronic physical pain, I might be able to live. But with it, I don’t think I have a chance.

I had a zoom call with a dear friend. She noticed my beard and commented on it. She loves the transformation that I am going through and it made me feel good as she knew me before I started my transition and came out as trans. She has been so supportive and I love her for that. Not too many close friends are as supportive as she is. Most don’t understand and won’t try to because they are stuck in their ways, the black and white thinking.

I went out today. I had to go to the pharmacy and pick up my meds. The damn pharmacist was an idiot as he said he couldn’t fill it then when I told him it was a 28 day, he said he could. I had to fill it today or I wouldn’t have meds for this evening and going to Tues would be terrible. I hate that I have these restrictions on my pain meds. It really sucks to be in this kind of a bind. Back and ankle have been switching off hurting today so I was glad I went out for a bit to stretch my legs. I have been in bed since then. I just can’t bear the pain because my back hurts so much. The muscle relaxants aren’t working as well as they used to. I don’t know if I have developed a tolerance to it or what. Just sucks because the cramps are so bad I can hardly stand up more than 10 minutes.

I have been trying to keep my fluid intake up because it is kind of warm these days. It has been hard because I haven’t had too much of a thirst. My bladder function is dependent on the fluid intake so I need to drink in order to go. Otherwise, I have to cath and I would prefer not to do that. I had to last night before bed because it was more than 5 hours and I wasn’t getting any urge to go despite drinking a lot. It is a catch 22 with the bladder. I can drink a lot but not have an urge or drink the same amount and get an urge. I have no idea what causes what and when. It drives me crazy.

I need to cut my fingernails. It is the one self-care thing that I absolutely loathe. I wish they didn’t grow so damn fast. Seems like I got to cut them every damn week. But I like when my nails are short. That is the only good thing about doing the deed.

about pain meds

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

About pain meds

“It’s ok to be on pain meds. Can we stop acting like not taking pain meds is some sort of moral success? Being in pain doesn’t mean you have an addiction. It’s okay to not want to be in pain. I’d go so far to say that it’s normal.” Lupie Linda

I feel like I don’t deserve pain meds because I’m a bad person. I sometimes feel evil so I feel that I deserve to be in pain. I also feel guilty about taking pain meds because I know there are plenty of chronic pain patients that don’t have access to pain meds anymore. I know I am dependent on my meds and though there maybe times where I take and extra breakthrough med here and there, I am not addicted/ Pain levels dictate how I take my meds. If it’s above a 10 I may take more than when my pain is a 7. Often times I will go about my business and pain levels will go from a 3 to a 12 in a blink of an eye. It’s at these times when pain is a 12, the here and there come into play. I feel bad about taking the extra pain med I need to calm down the level of pain I am in. I know what works, usually. The bad part is my pcp doesn’t want to go up on my BT meds, even though I think it will be beneficial for me. He wants to put me on methadone and I don’t want to be on it. The people I know who take it don’t get relieve of their pain while on it.

I sometimes feel that I shouldn’t complain about my pain to my providers because of the ping pong ball back and forth I get. Almost like pass the buck. Or I get the sorry you’re in pain there is nothing I can do for you. That is the one thing that makes me feel so suicidal. Doc knows I am in pain but can’t do anything for me. So I feel like a) I got to manage anyway I can with what I got and b) have the why bother taking anything at all if it isn’t going to help? I flip through a and b frequently. Usually it’s 3am when I cry uncle and take something for the pain because all the non-narcotic meds haven’t done shit for me.

The downside to trying to play catch up to the pain is I may look “high” as my lil sister has constantly pointed out to me. My eyes appear dilated to her. I will not feel high or drugged out. I won’t even feel good. I usually just feel nothing or “normal”. I hate that she judges me like this. It makes me feel bad and guilty for trying to ease my suicide level pain. I try going without pain meds when I am below a 10 but CRPS pain can change in an instant. The level 6/7 can quickly become a 12 or higher. I use numbers above a 10 beciase chronic pain doesn’t fit neatly into the 1-10 scale. Chron pain scale is 0 to 14+ (see photo of scale). Level 14 is unbearable pain where you cannot function and wish you were dead. My breaking point is usually a 12 though. It will last for hours to days when I am in a flare, especially if the weather is whacky like New England weather can be. I feel it when the barometric pressure goes up and down. I have kept a record of it and usually the barometric pressure of 29.5 to 30+ will increase my pain. I don’t sleep during these flares which only makes the pain worse to cope with. I have found that the higher my sleep deprivation is during these flares, the more likely I am to think of suicide and plan for ending my life. Once my sleep is some what back to normal, the suicidal impulses are lower.