Category: cauda equina syndrome

disturbed sleep and back pain

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

Disturbed sleep and back pain

I woke up around 6 am with back pain. I had to pee and getting up was so difficult when it hurts to move. After I used the bathroom, I sent a message to my pcp about seeing if he would increase the dose of my pain meds. I had enough and if he doesn’t then he doesn’t. I asked and it will be the last time I do ask for an increase. I told him I have arachnoiditis, a painful nerve condition that could be causing all this back pain. I haven’t gotten a response yet.

I have been feeling pretty sick most of the day. My head hurts and I am really tired because of the disrupted sleep caused by pain. I had woken up at midnight to pee but was able to get back to sleep right away. It is cold in my room and I love it. I think, though, it is why my back keeps flaring up. The chill in the air might be causing spasms I am not aware of. But I will take the coldness over the warm. I am under blankets so I am nice and toasty. I love being under blankets when it is cold out. Reminds me of my childhood as I didn’t have a radiator in my room. I just had a lot of blankets on top of me to stay warm.

My hair is getting so long. I think barbershops are going to open next week so I might be able to get a haircut. I hope so. I can’t stand my hair. I got to text my barber and see when he will be opening his shop. I can’t wait to get a bald fade again.

My left foot (CRPS) is a block of ice right now so I just put on thermal socks. I hate it when my foot gets that cold. It is so fricken painful, like having your foot in ice water. Then when it warms up, it burns so I get no relief. I hate nerve pain more than physical pain. Least with physical pain, I can try and control it but nerve pain doesn’t have that same sense of control because nerve pain medications aren’t that precise.

Tomorrow I have a meeting with my neurosurgeon. I will find out what he plans on doing for me to relieve the headaches and head pressure. My vision has returned to normal so I am grateful for that. It was getting me down that I couldn’t read because my vision was all blurry. Hope it stays normal.

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.

Saturday Blog 16052020

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

Saturday Blog 16052020

I took a shower today. I felt like I needed one after sweating most of the night because my room was hot. We had thunderstorms last night so I had to shut my window, which I did right before the torrential downpour. It was good timing on my part. The rains started an hour after they were supposed to start so I had waited long enough. I really just wanted to go to sleep. I woke up at 4 am to use the bathroom and then was in pain until pain meds calmed it down enough so I could go back to sleep. I slept till around noon. It was nice.

I didn’t do anything else today. I want to start a new book but I don’t know which one to read. I want to start the Marsha Linehan memoir but I don’t know where it scurried off to. I put it in a “place I remembered” and of course forgot where that is. I will go looking for it after I write this blog. It probably is just under some stuff that have fallen.

I am kind of in a depressed mood. I keep thinking of how limited I am in my recovery. I know I said I showered and that was laborious. I was so tired afterwards I just wanted to sleep. My back was cramping big time and it still is cramping. I can’t seem to calm it down and it’s just like things are always going to be this way. It is getting me down. I am having trouble keeping in mind that I am still recovering from surgery. It has been two months almost. I think I really need to be back in PT but with the covid restrictions I don’t think I can right now. I also don’t know if it is safe to do so with the fluid build up in my back, which could be why I am hurting so much. I just wish I had enough pain medication to cover the amount of pain I am in. I think I am going to ask my pcp for an increase in dose. Worse he could say is no, which will probably be the answer anyways.

If I can’t find the Linehan book, I just bought a history book on Reagan and Gorbachev on the Cold War. I am interested in how that came about. I hope it is a good book. It isn’t too long so I am looking forward to reading it if I can’t find the memoir. I just need to find a bookmark. Think I will try and find the CRPS ones that I bought a few months ago. Those are nice and sturdy. I got them from a UK organization. They have some good information about the condition on Twitter and FB. I don’t remember the name of it off the top of my head but if I do, I will post a pic of the bookmark on my next post.

you deserve to be treated

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

You deserve to be treated

Those were the parting words of my therapist today after we talked about how my father said that I gotta die when I am sick. We deduced that he is flawed and not mental as she couldn’t know him. He died four years ago, long before she was my therapist. I know he was narcissistic and a pathological liar. I should have known he was lying but when your 11, you tend to believe your parents and what they say. You really don’t know if they are lying and even if they are, you can’t prove it. You were always told to respect your parents and that is what you did, no matter how wrong it seemed.

We also talked about my suicidality. She brought it up. I was going to but didn’t really want to. She asked what I was going to do if the feelings came up again over the weekend and I said I would cope like I usually do. That was the wrong answer as she shook her head. I don’t know why but apparently calling a hotline is the answer. I don’t think so but whatever. Sometimes it is good to call one but most of the time I just don’t have the patience to wait for someone to connect on the line. Even texting can be a pain as you wait for someone, especially during “peak” hours. Most of the time I get annoyed and then hang up or text cancel or stop. I am usually too agitated to stay on the line.

I had my meeting with my pcp. It went well but I didn’t ask for a pain med increase. It was on my mind but I was too chicken to ask. He asked a few times if there was anything I needed from him but I just couldn’t bring it up. He doesn’t want me to be on the meds to begin with and I find that it hinders my conversation about my meds. But the fact of the matter is I have pain and until that is dealt with on some level, I need to be on the meds that I am on. I can’t just stop taking it because he doesn’t want me on them. He does want me to go to the pain clinic for an evaluation, just to talk. But because of Covid, making an appointment is hard. I don’t know if I would be seen in a timely manner if at all at this point. I know once places reopen it might be better to call and ask for an appointment. Sucks because I got the ride now to take me there. I have it for another few months and then I will have to reapply for assistance. I don’t know if I will get a letter or not. I just need to be aware of the time frame. I only got six months because of my surgery. I don’t know if it will be longer when I reapply.