Tag: chronic illness

6 feet apart

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

6 feet apart

This song is by Luke Combs, one of my favorite new artists. He seems to capture the mood perfectly with this beautiful song in these times. Thought I would share it with you all.

I haven’t done much today. I have been resting and started a new book, well, an old book that I am rereading as I never finished it. It is called the Anatomy of Melancholy by Robert Burton. It is a classic text. It is old English and has a lot of Latin in it that is sometimes translated and sometimes now, which is annoying. I hate when people use Latin thinking people know it when they don’t. Drives me crazy.

Weather is cold and wet. Had to close my window as temps in my room dropped below 60 degrees and rain started to come through the window. Hated to close it but it was damn cold. Now it is a little warmer in my room but not too warm. Temps are just above 60. I had to put on thermal socks because my damn foot got really cold. With the steroids, I haven’t been in too much pain. I have one more day of being on them and then I know pain will be back. Shame that they can’t be used as a treatment for CRPS. It really helps calm down things.

My mother made dinner and that has been the second thing I had to eat today. My appetite has been low despite the meds. I am surprised I don’t have the hungry horrors. Back has been bothering me all day and I’ve just been feeling low. I am kind of nervous as to what the MRI will show. I hope I don’t have to have surgery again. That will really suck. I really want to keep PT at home as that has been helping me the most. I haven’t done the home exercises because I get around okay but it is good to have someone do them with me while they are here.

I am glad I have this blog to write my thoughts down. Sometimes it is a good thing and other times it can be bad, the thoughts I mean. I haven’t been in a dark, dark mood in a while. If I have it hasn’t been for long, thank goodness. I still get depressed but not suicidal. It is weird not being suicidal. I am grateful I am not but man, this is so new to me, after spending a year or more with constant suicidal thoughts. It was so overwhelming I thought I was going crazy at times. I don’t know what changed this. But I am glad it has changed. I didn’t think it would. Guess that shows that no matter how low you feel, you don’t feel that way forever, even if it feels like forever. Just takes some blessed time. I think I was suicidal for at least two years or so. Since my surgery, I haven’t been as depressed or suicidal. The voices have been quiet. I just been hearing my “normal” voices, the ones I hear nearly every day. I am on a high dose of paliperidone (Invega) now because I was hearing musical hallucinations. My psychopharm is aggressive with the voices. She has been from the get go. She also is aggressive with my depression. I find it a weird change as my psych was so conservative with meds. We would always be on the lowest dose possible to achieve effectiveness but there really wasn’t any scale or something we would go by. Just seemed like I had to wing things a lot. With the new psychopharm, I don’t have to wing it. I get treated for my illness with the hope that I will feel better. It has worked so far. I started to feel better after my suicide attempt in December. Weird how that played out. I still asked my treaters to ask about my suicidal stuff because of the one medication that I find lethal to me. They haven’t asked about it in weeks since my surgery and I haven’t felt suicidal so I haven’t brought it up. I probably won’t, given the circumstances. I really don’t want another hospitalization this year or ever after the last one. It was such a bad place to be in when you are so depressed and want to die but they won’t let you. I am not sure how the units will be now with the virus. I hear that they haven’t done social distancing or any other practice since it kind of negates wellness. I am sure it is hard to do when in an inpatient setting. But I am not feeling that down to think about hospitals right now. Hopefully I won’t have to go in any time soon.

I have my appointment with my therapist tomorrow morning and I hope that I can get up early to make coffee or tea. I need to wake up for the meeting because lately I have been so sleepy. I then go back to sleep afterwards. It just wears me out. But then a lot of stuff wears me out these days. I hate it. Just going up the stairs winds me every time. It is getting better though. I am not so winded unless I do both sets of stairs within a few minutes of each other. Then I am really winded. I need to go to the pharmacy tomorrow so if my meds are ready after the appointment I will pick them up. They are supposed to be ready tomorrow. The pharmacy has been a little screwy the past few days. I don’t know if it has been because of new staff or what but they have been slow as molasses getting things done. I had to wait for a three hours for meds one day because they screwed up the original order. They processed it under the wrong medication! I was not happy and complained about it because they should fucking read what the damn thing says. Makes me so angry. There is a difference between IR and ER. And it is in black and white so there shouldn’t be a mistake.

Wind is howling. I hope it doesn’t snow tonight. We certainly don’t need it!

stupid is as stupid does

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

Stupid is as stupid does

I am really pissed off that there are places where the government is opening up beaches and other places without a clear indication that it is safe to do so. Florida, the state of the stupid, seems to not care about the welfare of the people at all. I know we are all a little crazy being kept in our homes but it is far safer to be there than outside where you could catch something and pass it on to unsuspecting people who are sick. I also cannot believe the doofus is still in office despite being impeached. What is the point of going through an impeachment process if they don’t oust the person sitting in office? Fuck. And this idiot blundered this virus so badly. I am at a loss for words. Do me a favor, Stay the fuck at home!

I have been having bladder spasms and pain all afternoon. I don’t know why. I don’t think I have an infection. But then I have been wrong before. Only problem is I don’t want to go into the hospital just to drop off a specimen again, especially as the cases of the virus have gone up. I am still compromised as I am recovering from surgery so would be more susceptible to it if I were exposed. I might have to go up on my bladder spasm medication. If it doesn’t stop by the time I go to bed, I will send my uro a message asking her what to do about it. I really don’t want to increase it because it causes constipation and I am just now becoming regular without having to take Miralax all the time. I think the Senna and magnesium have done the trick for me. I don’t want to upset the balance. I have no idea what is causing me to have this balance but I know that if I add more constipating medication I am going to disrupt it.

I had therapy this morning. We talked about being on pain meds and what it means for me. She wants me to take them when I need them and I guess that is the “permission” I need. There is nothing wrong with taking my pain meds but there is if I don’t take them when I need them. I don’t know why the pharmacy didn’t fill the prescription today. I will find out tomorrow and file a complaint because it should have been filled. There is no reason why it shouldn’t, unless they didn’t have the medication in stock. I won’t be getting a 30 day supply. I will be getting a 28 day supply, which always messes me up as to when I can get my meds filled again. I don’t have to worry about it until I get the damn thing filled and then I will put the refill thing on my calendar to remind myself so this doesn’t happen again.

I got the window open and it is cold in my room. Temp right now is 67 degrees. It was 66 earlier. I shut off the fan so maybe it will warm up. My cousin, the one whose boiler broke, is still broken and she is without heat until her son can get the part to fix it. I feel bad for her and her husband who is in the cold. But they have their wooden stove so she assures me she is ok. I still worry. It is supposed to rain tomorrow, which is probably why my back is so bad today. I am keeping the window open as long as there isn’t wind, I should be okay with it. If there is wind I am going to have to shut it. I don’t want water in my room.

Sunday Blog 19042020

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

Sunday Blog 19042020

I didn’t sleep well last night so I slept for most of the day today. I took my night meds early so I could possibly be asleep by 9p tonight. I already took muscle relaxers because my back was spazzing up a storm. My sister never went grocery shopping so I am hoping tomorrow my brother in law will take me. I need cereal, Gatorade, and other stuff. Most importantly Gatorade as my supply is good only for about 5 days. I really would like 32 oz bottles rather than the 20 oz that I have. That 12 ounce difference makes a huge deal. I’m hoping that it will be after 11 am when I am free. I have a 10a therapy session so I won’t be able to go until then.

I have been thinking of upgrading my phone but I am not sure I can afford to do so. If I do, I will have to take away the extra line I am paying for. I should do that anyway as the line is not being used at all. I wanted to keep it so that I had another number in case I wanted someone to call me but I got a google voice number to give out now. I got a text only number for my kindle as well so there is no reason for me to pay for another line. I still have the phone in case something happens to my phone. I paid off so both phones I own. I would like to get the Samsung 10 Note. I know it is bigger than my current phone but it comes with a pen and I would love to be able to write notes on my phone which I can’t do on the one I have. Or I might just wait till the dust settles for the Galaxy 20 model.

The PT I have called me tonight to set up a time for tomorrow. I won’t be able to go shopping like I thought I would. I might have to have my brother in law drop me off and pick me up. Depends how I feel after PT. I wish I could just order online as that would be ideal but I don’t have the money right now to do so. I just have my food stamps which can only be used in stores. Hope one day I can use it for online shopping.

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!