I have done nothing because there has been nothing to do without complete exhaustion. I made dinner and I am so tired it isn’t funny. I just heated some ribs and mashed potatoes then cleaned up afterwards so I wouldn’t hear the tyrant bitch. It was enough to get me worked up and feel worse than I was. I don’t know why I am so damn tired all the time. I don’t know if it is because my blood counts are still low. I just feel like crap.
I wrote an email to a friend and tried reading my book. It has been hard reading Marsha Linehan’s book as there are so many parallels between her illness and my own. The feelings are palpable and it stirs up stuff. She talked about finding god and being transformed when she found him. I can understand that. Lots of people do when their faith is strong enough or so I hear. I am glad she found him so she could move on with the demons of her life and work on “getting people out of hell”. She writes this so many times. I read some of the reviews for the book and there was a lot of complaints about this. I don’t mind it though as it is her life’s work and her book. She can write it as many times as she wants. It is how she developed a brilliant therapy that helped saved millions of lives.
Today has been a cool day so I have the AC off. I don’t remember what the weather is going to be like tomorrow. There was talk of thunderstorms but I haven’t seen the latest reports about this. It might have changed course or something. I will check it before bed. I am just worried about rain coming through the AC vent as it is open because my brother in law broke it. I have tape on it but that won’t hold much if the rain is heavy. It is windy out but not gusty.
I’ve been listening to Terri Clark and Mary Chapin Carpenter. I haven’t been on social media much. It is too upsetting for me right now. I have been trying to just rest like I should be with this stupid fluid build up. I don’t know when I will be having surgery. I am guessing sometime next week or the week after. I am kind of scared of the recovery as this first time was a doozy. It has been 10 weeks since my surgery and I still feel so tired and exhausted with doing anything. I just want to nap all the time. Yesterday I slept most of the day. I can’t stand how my stamina is so low. I am not sure what will increase it. I guess I need to do more but I don’t want the leak to get worse. I am on my last day of steroids. I hope the headaches don’t come back when I completely stop them. I don’t like the headaches as they just make me tired.
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.
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.
This song has been covered by my favorite male country artist, Luke Comb. I started crying listening to it because it brought back such memories of the past. It made me sad that things are changed and now I will never be able to work or do much else. I am feeling discouraged because of my back pain right now. I tried going to the bathroom again and failed to cath on the first try. I thought I was going to pass out on the toilet as I couldn’t stand for the length of time to pee. It took longer because I couldn’t get it done right. Pissed me off, no pun intended.
I am having a difficult time sleeping again. I can’t seem to settle down. It has been like this all day. I got a bloody headache so made myself a sandwich, which took more spoons than I thought it would. I was already in the negative. I couldn’t have someone else make me the sandwich because there is no one else. I could have heated up some chili but I will have that tomorrow with some tortilla wraps. It is really good with the flour tortillas. I like to make a little burrito out of the chili.
My sister made a beef stew today. It was her first. It was okay. I like my mother’s better. Hers had a weird taste to it. I am not sure what it was, possibly too many bay leaves. There was nothing to the thing as the potatoes had disintegrated and there was hardly any beef. It was all stew which was good with a couple pieces of bread. I always enjoy a stew. I need to buy some chunky soup. I haven’t had them in a long while and the soup is really thick. I like soups that are hearty.
I don’t know if my blogs have been making sense. They have been just a stream of consciousness that I use because I cannot sleep. I would write but my fine motor skills have been affected by the medication Invega. I also been taking PRNs of trilafon, another culprit in the deterioration of my skills. I just feel so shaky lately because of this fatigue. I am not looking forward tomorrow. I know I will be fine but it might take me a few days to recover.
I’ve been in contact with my psych and she wants to have a zoom meeting with me. I will be seeing her face to face for the first time in 9 months. Can’t believe it has been that long. She sent me her information for our appointment and I can’t wait. I just hope there are no glitches. That would really suck. Things have been going okay with the virtual visits for therapy. I haven’t been fully present though so I find it hard to talk about stuff because I don’t know what to talk about. I am not really depressed though I am feeling devastated at times. I cannot believe that my surgeon was so good to help me get better but things will still take time. I have it in my record now that I had a tethered cord. I got to contact my neurologist and let her know about it. I know she wanted to know the outcome of the surgery. Maybe I will do that tomorrow as I don’t have anything else to tell her other than I got a numb butt and genitalia. Price of surgery I guess. I just hope in time feeling comes back. I got to ask the surgeon this. He would know or maybe he wouldn’t know for sure but I think feeling will come back in time because there is no other compression going on. He had to irritate the nerve to get it to go numb. Those nerves are sensitive and take a while to recover, if they recover at all. That is why I am worried and devastated at times. Bladder is still being the same as it has been though I have been voiding more just because I want to see if I could. I do but I don’t empty my bladder fully so that isn’t good. That can lead to infection with residual urine in the tank. I am emptied now and hope that I can sleep. It is just after midnight so I will stop here for now.