Category: Chronic pain

a Good Friday

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

A good Friday

I had a pretty good day today despite being in a lot of pain right now. I talked with a friend who is in lockdown at his assisted living center. He nor the other residents of the place are allowed to leave the premises so he walks the corridors to get some exercise. We spent a good hour or so talking, which is the most time I have ever talked with him. Usually it is just a few short minutes so I was glad to converse with him. I told him about my back surgery and the reason why I had to have it done. I felt awkward when I first was cathing telling him but he was understanding when I told him today. He is a really good friend.

The evening I had a zoom meeting with my cousins. It was good to talk to them. It went over the allotted time so I got disconnected but we reconnected a few minutes later. I love my family. We always have fun when we get together, even if it is over the internet. One of my cousins commented on my hair saying that I should keep it long on top and then just buzz the sides and back. HAHAHA That is usually how I have my hair cut but with the virus I haven’t seen my barber in two months. This is the longest I have gone without a haircut.

I have been discharged from occupational therapy. The OT came today to assess whether I had showered okay and that I was using the equipment to get dressed. I really haven’t been getting dressed but will use the things if I need to go out. I haven’t really left my house in a while. I might go out tomorrow just to get some air if there isn’t that much snow on the ground. We are supposed to get at least two inches tonight but I think it will be rain as the temp right now is 45 degrees so unless it drops suddenly, I don’t think we will get snow. I hope not anyways.

I saw a post by the Counting Crows on FB and I had to listen to their music as it has been ages since I last played their music. My favorite album is August and Everything After. For some reason I don’t have the name of the songs just the track number. I keep meaning to change it but it is such a pain to “rename” music as you have to do it individually and to different fields or it won’t save. I don’t know why it didn’t transfer over when I first burned it to my phone. Sometimes the transfer loses information going to devices.

I wanted to shower today but I have been so exhausted that I didn’t want to exert myself by taking one. The OT suggested to take them at night so that I can sleep better but I don’t like taking them at night unless I really have to. I will try and take it tomorrow morning. I asked my sister if she would help me change my sheets tomorrow. She said she would. We’ll see. She is going to the grocery store for me tomorrow. I gave her a list. I hope she can get me the Gatorade that I need. I need that more than coffee.

a blah day with headache

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

A blah day with headache

Past two days I have had a headache that is not going away with Tylenol or motrin. I put a call into the surgeon in case this is something for him to know. I haven’t heard back. I just have been feeling so awful. I am really tired and PT didn’t help at all with energy levels. She had me go up the stairs to increase my endurance. Bitch. I had to stop because I just couldn’t handle the fatigue. She took my heart rate and it was high. No shit. I will be glad when this is over with. I am not sure I will go for outpatient therapy. I don’t think it is really needed but I will let my surgeon decide.

Aside from feeling lousy, I haven’t been able to go to the super market to buy some groceries. I need some stuff badly. I just wish I had someone to take me. I might end up taking a cab next week if I can hold off on things. I want my nephew to help me with the groceries. I don’t know if I can physically do it with how I have been feeling lately.

I think I might be dehydrated as I really haven’t been drinking fluids since I started taking antibiotics. I have been trying to have at least a cup of tea or coffee but I am low on half and half so can’t have coffee. I can have tea. I tend to like it better when I am home. I miss having my espresso. But I am running low on Gatorade so I need to get more. I bought the powder Gatorade which I might make a few bottles of those. I still am having trouble peeing. I cath at least three times a day. This is how I know I am dehydrated because I am not producing that much urine. I am supposed to cath at least 6 times a day but I haven’t been able to do more than four. Today I felt like I had to pee and when I tried to go, nothing came out. I ended up having to cath anyways. I am getting so frustrated with a void here, a cath there. Wish my body would make up its mind as to whether it is going to function or not. And if it isn’t going to function to let me know. I hate this guessing all the time. And trying to figure out how long in between voids/caths. That is something I have been struggling with most of the day. I had to mentally make note because I didn’t want to use an app or timer like I did yesterday. I ended up going before the timer went off by an hour or two so it wasn’t really helpful for me like I was hoping.

I hope the surgeon or his NP gets in touch with me tomorrow because I am tired of feeling yucky. I am going to try and sleep now and hope I succeed.

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.

A Cuppa and a Shower

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

A cuppa and a shower

I had therapy this morning but because I didn’t wake up right away, I didn’t have time to caffeinate before the appointment. I miss having a latte. I don’t know if the Starbucks I go to is open or not. I heard some are closed due to the virus. I struggled to focus during therapy. I was just not there and then half way through session my therapist pulls the what is going on crap. She said I don’t seem right. Like something shifted. Something did but I didn’t know what. I just didn’t want to talk anymore. She wanted me to talk more about why I felt like I didn’t deserve pain medication. I am supposed to write about it. I think it is going to be on paper first and then I will type it up so she can read it. I am not sure if I am going to password protect it or not. Guess it all depends on what I write about.

I finally got the antibiotics for this stupid fucking asshole UTI I got. My brother in law picked it up for me and I am grateful because it is nasty out with rain and high winds. The winds are so bad it took out a branch of the tree that is just in the front of our driveway. My brother in law was not happy. I hope the antibiotics work in a day or two because it really hurts to pee right now. I can’t take peeing every fricken hour anymore. It is driving me nuts.

After therapy this morning, I took a shower after I had a cup of tea. I so needed it. I had some cheesecake with it. The shower felt so good. I wasn’t able to stand too long because I shaved my armpits. It has been raining and I have been hurting most of the day because of it. We had high winds that took out a tree branch and that branch is now blocking our driveway. It is going to be days before the city comes to get rid of it. I put in a tweet about it hoping to get a response but I haven’t yet. Even though the shower felt good, I was still exhausted afterwards. I wanted to nap but resisted as I haven’t been sleeping too good the past few days. I am just so exhausted from this infection and recovering from surgery. I still don’t have energy levels where they were pre surgery. I think the testosterone is helping build up my blood cells again. I have my shot this week so hoping this time next week, I will be feeling better and not so damn tired. The infection should be gone by then anyways. I am going to be careful every time I cath to avoid getting another infection. I think I got to start using wipes to clean myself before inserting the catheter. It can’t hurt.