Tag: chronic illness

Memorial Day 2020

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

Memorial Day 2020

I had a good day, though I am now feeling sick again. My sister made BBQ and it was so good. We finished with brownies and ice cream. My head feels like it weighs a ton and hurts so bad like it did last night. I don’t want the surgery but I know that the headaches aren’t going to stop unless I have it. On top of this, I have a UTI that is hurting so bad. I am throwing blood clots and those hurt so bad. I am taking AZO pills (for urinary pain and urgency) but I still hurt, though not as much. I forgot to take the pill this morning so I am hurting from missing a dose. I plan on taking them until I am on antibiotics, which won’t be until later this week. I let the NP know I was having symptoms and will be dropping off a specimen tomorrow. I plan on going after therapy. I just hope the bus comes within the half hour. I need to check the schedule as it has been months since I last took the bus.

I cleared a path for my brother in law to get to the AC as the rest of the week is supposed to be hot. I hate having to lose fresh air but I rather be cold than sweating. Clearing the path cost me so many spoons. I am so exhausted. All I did was move stuff from one part of my room to another part. I was able to free my waste basket. Now I just need to empty it so I can use it properly. It is currently holding stuff that shouldn’t be.

I want to shower but I don’t think it will happen. I am way too tired. I just don’t have the energy to. I will definitely do it tomorrow morning when I have some energy. Morning seem to be the best time to do some things. I don’t know why as I am not a morning person but that is when my energy and pain levels are best.

I have been feeling palpitations while I was clearing a path. I hate that I am still not 100%. And there is no way for me to be 100% as I will be having another surgery that is bound to sap my energy some more. It really is going to set me back. I don’t know what I am going to do about it. I think I am going to get iron pills so I can build up my iron in my blood. The testosterone builds up too but this might help more so. I will get the slow release kind so that it is less constipating. I should get my blood drawn but it won’t be accurate because I am still recovering from surgery.

Champagne Night

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

Champagne night

Lady A just came out with a new song called Champagne night and I love this jam. It is so good. They played it live last night and it was awesome. I watched it for a little bit until I had to go to the bathroom for a million times. I have no idea what was wrong with my bladder and bowels last night but all I did was go. I think I have a UTI and for the bowels, I have no clue what was going on. It was so annoying.

The night before I posted a tweet that said what I needed to end my life and that things weren’t that much different than they were 25 years ago. I am reading Marsha Linehan’s memoir and found that between the ages of 18-20 we went through our own version of “hell” and while she became a famous psychologist, I am still suffering and wanting to end my life. I texted my therapist this tweet and I got met with a need to go to the hospital if I am not safe and if I am having thoughts than I need to call a hotline. Apparently telling your therapist these things is not an option. I am kind of mad but I am so used to people turning away when I am suicidal that at this point it is just expected. Except on Twitter where at least three people tweeted at me if I wanted to talk, I could talk to them. One of them DM’d me so we chatted for a bit until I fell asleep. I find this kind of support preferable to calling a hotline or going to the emergency room.

I had to restart Word as it needed to update. I was getting annoyed as I wanted to write stuff but I kept getting delayed. I should have just got the pad of paper and a pen and wrote. I think that is what I am going to do for the 200 word piece I want to write. It is still percolating in my brain. I keep thinking about it so it is close to being written soon. It takes me a while to write what I want, especially these days where one day melts into another. I want to stress that in my writing because I think it is important when you have a disability and lose track of time in this pandemic. I mostly just stay in my room because I am scared my visit to the pharmacy might have caused me to be exposed so I don’t want to expose my mother or sister or nephew. I just isolate and stay away from my family.

I had to go to the pharmacy tonight because I am almost out of the AZO pills for the UTI I have. I had to get some more and while I was out, I got a thing of Oreo ice cream because why not? It was not available in the grocery store when I went last but it was available in the pharmacy. I will take it! At six bucks a carton. Yikes, highway robbery though. I think it is worth it. You are paying for the convenience of the item but the price is about the same in the grocery store. I hope I will be able to buy groceries next week. I need some things again. I still have plenty of cereal but I want meat and fish. I was sad that they took away my beer battered fish. I will have to get it in the store now. I need to go to the store sometime next week. Maybe I can get my brother in law to take me. I just need a few items. My cousin was to take my yesterday but he “got better things to do” basically. I didn’t feel like going out yesterday anyways. I didn’t sleep well and I was really tired. I didn’t sleep last night either. Next door neighbor’s car had a squeaky belt so it woke me up at 0130. I couldn’t go back to sleep because I got a bad headache. I slept like every two hours. I finally gave up and then after breakfast, took a three hour nap. Just hope I can sleep tonight. Last night was difficult because some asshole decided to set off fireworks at 2330! WTF it isn’t even June yet! I hate assholes.

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.