Tag: chronic illness

psych related day

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

Psych related day

I had therapy this morning. I woke up too late to have a chance to make tea or coffee. The session went okay. I told her of my suicidal plans and what was causing me to be suicidal. She kept on saying that there was something different and she wanted to know what that was. I had no clue what she was talking about. I didn’t feel different. She encouraged me to ask my pcp when I meet with him in seeing if there is something different we can try to alleviate my pain. I am nervous about meeting with him. I usually have a hard time asking for what I need. I might not ask just see where he is at and see where the conversation leads us. I know he is going to want me to see a pain clinic outside of Boston. He referred me there before but I wasn’t able to get there because of transportation issues. Now with Covid, I am not sure I will even get an appointment as a new patient.

In the afternoon, I met with my psychopharm. She felt bad that she isn’t able to do anything for me. Such a contrast with my therapist. She (psychopharm) was telling me I was resilient and inspiring. I don’t get that from my therapist at all. I don’t know why she doesn’t say those things.

After my appointment, I went to the pharmacy to pick up my steroids. I was hesitant to start it because it was so late in the day but I figure two doses is better than none. I might set the alarm for 3 or 4 am so I can take the third dose of the day and then start the day with new dose but we’ll see. I am not looking forward to disrupting my sleep.

I am having a hard time writing today. I just can’t seem to get with it. Just like therapy. Maybe there is a connection. I don’t know. I guess a little over 300 words is enough for today. I am in pain and I just can’t seem to ignore it. I hate when it bothers me so much.

Saturday Blog 09052020

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

Saturday Blog 09052020

I did nothing today except to read a couple chapters of Unquiet Mind. It is a well written memoir that talks about the pain of having to deal with a mental illness all the while working in the mental health field. I was glad that those that knew didn’t hold back her tenure at UCLA. It must have been a bittersweet moment to have tenure. I don’t think I could do the academic teaching thing. I often wonder if I had kept on track and not gotten ill while working on my bachelor’s degree where that would have taken me. I was only about a year and a half away from graduating when psychosis ended my academic career. Now I won’t be able to go back because of it being so damn expensive.

I got my new thumb drive. It is a USB hub and is so tiny. I could easily lose this so I am going to keep it in my laptop or it will get lost. I plan on just saving my blogs on it rather than putting them on the cloud like I have. This way I can store them a little more organized

I didn’t do well last night. I had a hard time trying to sleep. I finally decided to sleep with my feet on my wedge so my legs were raised as I slept on my back. I passed out soon after I was all comfortable. But I kept waking from weird dreams. I had to pee around 4 am but managed to go back to sleep for a couple more hours before I *HAD* to go. Around 7 I did my business and then took my morning meds so I wouldn’t have to wake up again in an hour. Some idiot called me around 10 and then I was up. I was trying to be a good boy and just relax today but it was so damn hard just lying there in bed. I was bored and not really tired. I wish I could have read but my head was hurting so I couldn’t. It was frustrating. Between the headaches and blurred vision, I was surprised I was able to read at all today.

For those reading my blog for the first time, I had back surgery 6 weeks ago and suffered a spinal leak a couple of weeks ago. There is spinal fluid in my spine that is causing headaches, palpitations, and tachycardia. The blurred vision is new because I had to bring myself to the max the past two days. I went food shopping and showered. Then next day went to the pharmacy to pick up my meds, but I had to go twice because half way there I forgot my mask. I still am not used to carrying it with me. But as the cliché goes, the new normal will soon be upon us and it will be like grabbing keys and cell phone before leaving the house. The reusable masks that I bought have not come in yet. One of my packages is stuck in customs in Los Angeles. I don’t know when I will be getting that package. It is from China so I am sure needs to be in quarantine or something before it can be released.

did too much and paying for it

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

Did too much and paying for it

Yesterday I did grocery shopping and showered. Today I went to the pharmacy because I forgot to go yesterday. It was hard. I walked half way there only to realize I left my mask at home so I had to walk back. I had to rest because I was short of breath. I got my meds and then collapsed when I came home. I have been sick since 11 am. I have tried to keep up with eating and hydrating but it has been difficult. My bladder is giving me signs it is not completely healed. I have been experiencing some hesitancy to go and then some starting and stopping when I do go. I am frustrated. I then had to go again an hour later and I had a full bladder when I cathed. So I can’t rely on voiding anymore. I usually cath at least three times a day but now it might have to be more. We’ll see. It is still early and I am still drinking to keep myself hydrated but it is hard when I am not thirsty.

I got headaches, palpitations, and high heart rate going on. I have been lying flat but I couldn’t stay down. I was too antsy. I should have taken an Ativan to calm down. I think I have to drug myself in order to get the much needed rest I need to get rid of the fluid. My friend said that it is like a bruise. Another person said that I need a drain. If I have to have surgery, I think that is what is going to happen. I am kind of scared of surgery because I already have arachnoiditis and I don’t want it to get worse or add to what I have. I am starting to have immune response to surgery and that isn’t good. Arachnoiditis is sort of like an immune response to surgery. My friend said that it will not go away. I am stuck with it but I need good pain control. Trouble is with Covid, I am not going to be able to see the new pain staff my pcp wants me to see and I know that I need an increase in pain medication. I don’t want to switch meds. I just want to increase what I have as the non-opioids are not doing much for me in terms of pain control. I have been on a stable dose of meds and just haven’t had too much relief except for the extra I take when pain is really bad. It really isn’t an “extra” as I don’t have much room to take more than I need on any given day. I hate that I sometimes have to ration my meds because otherwise I will run out before I can get a refill. It isn’t all the time that this happens. But with recovering from surgery, I have been in more pain than expected.

I want to write more but I need to lay down. Head is pounding and vision keeps getting blurred. I think if this keeps up I might have to go to the ER. I hope not but I don’t like these symptoms I am having and my gut is telling me something serious is wrong.

I’m just tired

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

I’m just tired

I’m tired of crying. I’m tired of yelling. I’m tired of missing people. Tired of missing out. Tired of feeling worthless. Tired of not being able to let go. I’m tired of pretending. I’m Just Tired. ~author unknown

This was a meme that popped up in my Instagram “memories”. It is fitting for today because I am tired. So very tired of being. I don’t want to be anymore. It is too hard to continue on. But I am also too tired to do anything about it so I sit here like a glob. A big fat glob. One of my TG friends showed a pic of his new chest. It looks good. I want that so bad but I got to lost like 30 pounds to do it. I know I can do it, unhealthily. It just takes some will power to do it. I’ve lost that weight before and I can do it again. I just need to want to do it. And right now I am too tired to do it. Wouldn’t matter anyways. Even if I lost the weight tomorrow, I still wouldn’t be able to have the surgery with the virus going on. Everything is on hold. I feel bad my NP had to reschedule her surgery because of the virus. She seems okay with it but I know it hurts. I would be hurt if it were me.

I read some of Unquiet Mind by Kay Redfield Jamison. It is a good book that I decided to reread as it has been ages since I last read it. It is a memoir that resonated a lot with me. I don’t have bipolar disorder but this book captures the ups and downs so eloquently.

I am feeling tired even though I slept through the night. That hasn’t happened in a very long time. I usually wake up at least once to pee. I think my bladder nerves are healing as I have been able to cath less. I am only cathing right before bed to make sure I am empty before I lay down to sleep. There might be one or two times during the day where I cath because it has been more than 3 hours since my last void and I want to make sure I am empty. I don’t want another UTI or bladder infection. I am not sure if I am emptying completely or not. I will have to cath after I pee to find out. Last time I checked, I wasn’t emptying at all but that was a few weeks ago.

My hair is the longest it has been the past few years. I can’t stand it. I hope my barber opens his shop up soon. I really miss him! Just hope it won’t be mad busy when I see him, though. I don’t know what kind of restriction they are going to have. He most likely will have to wear a mask. I don’t care if he has to wear PPE up the ying yang. I just want my hair buzzed again! I miss the feel of it. I could do it myself but I know I will mess up and then it will be a disaster. So I am not going to do anything for it. I just have to wait like everyone else.