Tag: recurrent major depression with psychotic features

Saturday Blog 18042020

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

Saturday Blog 18042020

I am on day 999 of being at home. The weatherman was right. We did get snow so I won’t be going out as it is too slippery out. I was talking with my family last night and one of my cousins said her water boiler went so she doesn’t have heat. I am worried about her and her husband. It is cold and they just have a wood stove but it isn’t warming up the house. I hope she will be okay.

I have been in pain all morning. I woke up at 9 to take my morning meds and couldn’t go back to sleep. My back is all knotted up and shit. I took a shower and that made everything worse. I feel like my legs are not going to support me because my back is so out of it. I just took some meds to try and calm things down. I am so out of shape. I came upstairs and lately I just have been so out of breath by the time I get to my bed. I hate it. I don’t know when this endurance/stamina is going to come back to me. They say if you do it a few times a day you will get there. I have been doing this every day since coming home from the hospital and there has been no change. I just get so fricken tired so easily. And then I can’t sleep. I was up till 4a because pain was keeping me up. I felt like writing so I wrote a friend an email about my troubles. She was kind enough to answer the questions I had for her. She understands what I go through because she has gone through it herself.

I am trying to set up a zoom meeting with a friend for today. She is up in Canada. She is my best friend. We talk about everything and anything. It is so weird that we are so apart yet have the same symptoms and stuff. She used to cath but now she doesn’t. I hope that will be the case for me, though it isn’t looking like it will be right now. It seems every other day I need to cath and every other day I can void on my own. It is so weird. I don’t know why it is like this. It is driving me crazy that it is like this because it gives me the false hope that things are going back to normal but it doesn’t work out that way. I am so getting troubled by it. I need to talk to my therapist about it but I am not sure she will understand. I was so comfortable telling my other therapist of 16 years all about my bowels and bladder issues. I am not so comfortable with my current therapist. She is good and picks up on things. Sometimes that scares me that she does this because my other therapist didn’t so much. But then the other therapist liked to talk during the session rather than have me talk. In a way I am glad that I don’t see her anymore because I am getting the help I need with my current therapist. Eventually I will start DBT group and I am not looking forward to it. This will be when COVID flattens out a bit. I haven’t joined a group yet because of my back surgery and recovery and now the virus is making it so no gatherings are possible. Not sure how groups are going to be like when things resume. Maybe they will have a zoom meeting if everyone has the capability of doing so.

Foot has gone back to being a fuck. It is twitching again and there is nothing I can take to calm it down. I fucking hate this symptom of CRPS (complex regional pain syndrome). It started last night around 3 am and is continuing now. It is making me feel so hopeless and suicidal. I texted my therapist and she asked if I could take meds. I told her I took some but they aren’t really going to help the shaking/twitching sensation. I don’t know if there is anything I can take for this symptom. I asked my support group if there is something. Maybe there is and I just don’t know. My neurologist just wants me to increase the gabapentin but that makes me dopey as all hell and I tend to walk into walls if I take it during the day. This is why I take it mostly at night so that doesn’t happen. If I do need to take it during the day, I will take the least amount that I can to try and control some of the symptoms. My foot is fucking vibrating right now and not in a good way. It is so fricken painful. I think I might take some gaba now and see if that helps. I don’t have to leave my room till 5 anyway. It is 2 right now. I hope to get some sleep before dinner. My niece is making a ham and her mashed potatoes. Her mashed potatoes are the bomb. They are so good!

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.

A tiring Wednesday

by Midnight Demon, posted in CRPS, depression, mood disorders, painsomnia, physical pain

I managed to shower today but I was not able to trim my beard. My back has been bad today. I also been wicked tired. I still haven’t been sleeping through the night. I keep waking up because I have to use the bathroom. By the time I finish my business, I am awake and find it hard to get back to sleep, even with a dose of ativan on board. Then when I do go back to sleep, I feel sluggish and tired.

Today I had a wicked bad headache/migraine. Nothing has helped the headache and as tired as I am, I haven’t been able to sleep at all. I tried two times to take a nap and failed. I hope I can sleep tonight.

The thing that is driving me nuts is the urge to pee isn’t there throughout the day yet in the middle of the night it wakes me from a sound sleep. It is so frustrating because I have to use a timer or my med app to remind myself it has been x amount of hours and I need to cath. I’ve been doing that all day. I’m hoping that I can sleep at least six hours straight so I can function.

Tomorrow the physical therapist will be coming. I think I have like 2 more visits with her and then they will stop coming. I got to make sure I am up and awake. She called today to see if I am still MRSA precautions and I told her I was because I haven’t had the third test done to make sure I am negative. I got to talk to my pcp about this. I am hoping he can do the testing to make sure I am not MRSA anymore.

God I am so damn tired. I am going to stop here as I am drifting off. Until next time…

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.