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.
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.
This song was playing when I started typing so I thought I would share it. It is a song by Keith Urban and called We Were. I really love this song. It is on his new album, which I am not sure has come out or not. There are a few artists that I haven’t gotten their new stuff yet. I know he is one and Blake Shelton is the other.
Surgeon got back to me finally. I am to manage the tachy and headaches with rest but still try and walk around. If this continues, then it needs to be explored surgically. So I am done complaining about this matter. No way I am going back under.
There is another song that I am listening to right now by David Nail. It is called Oh Mother and it deals with the depression that he suffers from. It is a beautiful song. https://www.youtube.com/watch?v=j01POMsqQGU
Back has been bothering me most of the day today. And my ankle too. I have taken my BT meds and some Zanaflex for the spasms. It helped a little bit. I am still in pain. I wanted to take a nap this afternoon but I kept on dreaming weird shit so I couldn’t doze off. I was too afraid of what I might dream.
I have been in a sucky mood for most of the afternoon and early evening. I just feel so depressed and the surgeon’s reply made me feel more depressed. I asked him if being on steroids again would stop the need for surgery. I really don’t want to go under the knife again. But I also don’t want to be walking around places with my heart beating rapidly and then become short of breath.
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!