espresso, exhaustion, and pain

Espresso, exhaustion, and pain

I woke up several times during the night and early morning. I kept having weird dreams. I finally got up around 11. I wanted espresso, though I really didn’t feel like going out to get it. I had to return the thing I bought from Amazon so I figure I might as well get something to eat and my favorite drink.

Allergies were bad today. I keep sniffling and my nose keeps running. Didn’t help that they were cutting the grass. I love the smell of fresh cut grass but sometimes it makes my allergies worse. The bus was late and I was contemplating going back home. But I stuck it out and did my errand.

I think the soy milk was bad because there was residue at the bottom of the cup and the drink didn’t taste right. I drank some of it and wanted a nap. I didn’t feel like writing. I just wanted to go home. The next bus wasn’t for another hour so I played with my phone. A friend that I had met in the hospital sent me a pic of my book. She was reading it and liked it a lot. That made me feel good. I was feeling pretty depressed most of the day, suicidal at times. I am having a hard time because pain is making me crazy.

The bus came and I wasn’t even half way done with my espresso. I tried to drink more of it while on the ride home but it was so bitter it was hard to do. I dumped it when I got off the bus. I went to Walgreens to get a Dew Kickstarter. It’s like an energy drink. Maybe that will keep me from going to sleep. I don’t know. I got to my street and my ankle exploded. FUCK. Going up the stairs was torture. Then my bladder told me it needed to be relieved so I had to go back down the stairs. It was really muggy in the house so I was sweating. I hate the heat so bad. I am glad I brought the cane with me when I went downstairs. My ankle didn’t want to work at all.

I am really tired but I don’t want to sleep for fear of screwing up my sleep cycle, whatever the hell that is at the moment. I have a lot of things going on in Oct. I talked to my friend last night and we coordinated a dinner date south of Boston with my friend’s family. They wanted to do it on a Monday but because I have therapy, I can’t go. I also have the meeting with the pain group coordinator the following day. Then every Thursday there is an appt. I meet with the new neuro and then I have my physical. I hope somewhere in between to get my name changed. I was hoping the 1st week in Oct but I don’t think that will happen. I still need to call the courthouse to find out what kind of payment they accept for name changes. I’ll call after I finish this blog as it will be before closing time.

My Sox lost last night. It was a crappy night. They had a rain delay around 9 or 10 and I took that time to go to sleep. I wasn’t sure if the game was going to be postponed or continued and I wasn’t staying up to find out.

This weekend, I am going to try and buy some more zucchini so I can make the zucchini bread I made a few weeks ago. I want to bring it in to my psychiatrist. She loved the cookies I made. I somehow got to figure out a day and time to get my fasting blood work done. I’d say morning but I am never up in the morning anymore. Very rare that I am up before 9 these days because I have such an erratic sleep pattern.

I think my not sleeping is really fucking with my mood. Since I have been sleeping more and have no energy, my depression has deepened and I’m thinking a lot about suicide. I keep imagining my death and how I would do it. I got no plans to act on my thoughts but keep wondering if I could act. I just feel so miserable. Being in pain all the time is not fun and you can’t get used to it because it changes all the time. I tried to push through today and it exhausted me more than if I stayed home. I haven’t showered all week and I don’t care. Just feel really hopeless that things are never going to get better, that I am stuck with my ankle and foot acting up whenever they feel like it, regardless of whether or not I have done anything. I just want to crawl under a rock and stay there.

Chronic Pain Patients and Suicide

Chronic Pain Patients and Suicide

I was reading my tweets on Twitter. One of the chronic pain people that I follow retweeted something from a pain doctor. It was about suicides and the CDC guidelines that want to cut opioid prescriptions or limited them to only certain doctors. The article was badly editing as there were plenty of typos and I did not like the use of the word “committed” for every suicide he listed. It is sad and I know that more suicides are going to happen as the government tries to control doctors due to basically peer pressure. They have no idea what kind of havoc they are doing to those suffering from chronic pain and lead good lives because their pain is controlled.

Most of you all know I suffer from chronic pain and suicidal thoughts. My only saving grace at times is that I know after taking my meds, even though it takes a while to work, my pain will go away and be better in the morning. My suicidal thoughts will also be better when I wake up. If I no longer have my meds, I am as good as dead. There will be no point in living. I can see what all those people mentioned in the article go through. They died within weeks of being either taken off their meds or having them reduced. Some docs just stopped prescribing out of fear of losing their medical license. Some pain clinics closed their doors, leaving the patients to find other docs to just turn them down and having no where to go. This isn’t right. Taking away pain meds from patients who are not addicted and have adequate control is doing harm and causing deaths by suicide. Here is the article if you want to read it: https://medium.com/@ThomasKlineMD/here-is-a-list-of-suicides-as-of-9-9-17-caused-by-governmental-recommendations-to-educe-opioid-903c460abbc

Sometimes I think I need to end my life before my meds are taken away from me. I don’t know if my state will pressure docs to reduce their opioid prescribing privileges or number of scripts they write a year. I’m not on a lot of pain meds and I don’t abuse what I take. I take my meds in the manner they are prescribed to the letter. The sad thing is, even though my pain is somewhat managed, I still am disabled because I can’t walk that far or stand for any length of time. Just waiting for the bus or standing on the train is enough to cause me wicked bad pain at night. I remember what my pain was like when I was working. I wouldn’t be able to sleep at night and then would only have a few hours to start my next shift. It would be a really long day and then half way through my shift, I would start feeling excruciating pain that would sometimes land me in the ED. It was terrible. I know now that I will never be able to work again because my pain is just becoming unpredictable and too severe. There are some nights where all I can think about is ending my life because the pain is so severe I don’t think it’s ever going to go away or lessen. I am lucky, in a sense, that I can’t walk to where I want to die in these moments. Hell, sometimes I can’t even go to the bathroom.

Living with chronic pain is terrible and if people without a medical degree continue to dictate what a person with a medical degree does with their patients, the suicide rate is going to go up. There is no way it can go down, even with the best suicide prevention out there. There will be no stopping someone from taking their life because of untreated chronic pain. I am not talking about psychache, but I know those with chronic pain also have that too and can contribute to their suicidal thinking. I also know that if a chronic pain patient starts thinking about suicide, they should be referred to a mental health counselor or treatment center. Their pain meds should not be reduced or played with because of suicide risk. I know in my situation I was fortunate to have doctors that knew me well enough and knew that I would get help should my depression or suicidal thoughts got worse. Some patients don’t have that luxury. Always take suicidal thinking seriously. If that person owns a firearm, ask to hold it for them until their suicidal crisis is over. Make sure they get the mental health help they need. Also makes sure their pain is being properly treated or it’s not going to matter if they get that mental health help or not.

If you or someone you know is thinking of suicide please call the National Suicide Hotline at 1-800-273-8255 or text START to 741741, if in the US. Unfortunately, I don’t have access to other countries hotlines but they are available. I know Austrailia has a bunch and the UK has Samaritans 116 123 is their number off the top of my head. You matter and are important and enough, always!

Sunday 3 Sept 2017

Sunday 3 Sept 2017

I slept most of the day. I was up all night, not going to sleep till 0630. I had emailed my psychiatrist but haven’t heard back from her. I am in a lot of pain. My mother made spinach and pea soup again. I ate what was left of the spinach and had a bowl of the soup. Then I had some cookies.

It was raining and cold all day, a good day to sleep. I hope tomorrow I have a little more energy so I can make my cookies. Today would have been a good day to make them had I gotten some sleep at decent hours. I’m just staying up for the next hour or so to take my night meds and then go back to sleep.

My ankle is pretty bad. Everything hurts, all the bones, tendons, skin. I don’t know what to do anymore to make myself feel better. This condition is so hard. Sometimes it is the same pain but when it’s different, man, you just don’t know what the hell to do. And it’s just half my ankle/foot that hurts. It drives me crazy. I wish there was something I could do to take the pain away but the pain is different every single day so it’s hard to know what will work and what till not. It’s a waiting game. You take these pills and then have to wait for them to work all the time, if they do. Some pain I know what works but the other pains are difficult to describe so it’s difficult to know what would work best.

I feel like taking my meds now so I can lie down. Only problem with that is I could wake up before 0100 and then be up for the night. I’ve had that happen one too many times. I am just so wiped out from not sleeping. I just want to sleep and not wake up.

never ending. It just goes on and on

Never ending. It just goes on and on

I’m trying to settle down for sleep but a new pain keeps popping up when I lie down, when I sit up, when I take my meds, when I move it, etc. It is fucking never ending. I am not doing a damn thing tomorrow, least that is the plan for now.

I sent an email to my psychiatrist asking her if I was a difficult patient. I briefly discussed my therapy session with my therapist and that the therapy group down the hall from him contacted me. Unfortunately, it got filtered to my junk mail so I didn’t get it until I got home. My phone doesn’t get junk mail for they could be viruses embedded in what they send. Last thing I need is a virus on my phone.

I just sent an email to my neurologist asking her if she could help me out by confirming that I do indeed have CRPS as my PCP just wants to pass me off to another doctor. I am tired of seeing new doctors who aren’t helpful and then just want to pass me off or not treat/see me anymore. I see my neuro in two weeks. It was kind of a long email but I don’t care. My stupid phone kept on inserting different words as I typed, which annoyed the crap out of me. I should have just typed it on my laptop so I wouldn’t get aggravated. Lesson learned.

My foot feels like it is being strangled. There is such a pressure on it like it’s going to burst. I am so tired that I am reaching the over tired stage, which is dangerous because I could catch my second wind and then be up all night. I took an Ativan because along with the strangulation, my ankle is pulsating. The little muscles are twitching. This condition is so frustrating because there is never ending different kinds of pain. I wish I could see a doctor at this hour so they can see or I can try to explain to them what living with this condition is like. All I can do is send them an email and then not get a response. But at least by writing it out, it helps me because at least I have documentation that I wrote this to a doctor.

I still am shocked that in the great medical hub of Boston, I have not found a doctor that is willing to help me. Sure, my PCP gives me pain meds to alleviate my pain. I appreciate that. But he doesn’t want to stop there. Right now my diagnosis is in the air and it is making everything seem like we haven’t tried enough. I am tired of this merry go round. I want off. I asked my neuro if she could possible give me a concrete diagnosis and staple it on my PCP’s head. Well, I didn’t say that. But if she could send a note to him saying I have this dreaded condition, then maybe I don’t have to see yet another new doc. There is no treatment for this condition. I know this. My PCP knows this, my neuro knows this. But opioids help me and if I don’t have them, I am good as dead. I have exhausted physical therapy. I have tried injections. I have tried rest. This is no longer a case of tendonitis. It is deeper than that.

The pain is changing all the fucking time, all over my ankle, foot, toes, bones. It hurts every where. Normally, at this hour, I would be writing a morbid story about ending my life. That is what this blog was about. My suicidal thoughts in the cybersphere. But then one day someone took it too far and called the cops on me so I no longer talk about those things, even though it relieves the tendencies to act. Thoughts are NOT the same as feelings. And feelings does not mean act upon them. It is okay to feel. It is ok to think. Here is a quote from the father of suicidology, Edwin Shneidman that I had the pleasure of talking to him before he died.

“Never kill yourself while you are suicidal. You can, if you must, think about suicide as much as your wishes and let the thoughts of suicide –the possibility that you could do it- carry you through the dark night. Night after night. Day after day, until the thoughts of self-destruction runs its course and a fresh view of your own frustrated needs comes into clearer form in your mind and you can, at last, pursue the realistic aspects, however dire, of your natural life”. –Edwin Shneidman, Suicidal Mind, p166

I write these blogs because I still am struggling night after night, day after day. Pain increases my vulnerability to think of self-destruction. I have the means though no one talks about restricting them. I told my psychiatrist I have something that will end my life but still, she doesn’t ask about it when I see her. She never does. Poor assessment of risks. So does my therapist who knows damn well that I have chronic suicidal thoughts. It makes me angry that I am not treated the way I was with my former therapist, Bozo. She was annoying, I will give her that, but she fucking cared and if I had a method she damn well tried to take it away from me the best she could. I really miss her. Yesterday was her birthday. I wonder if I will be alive to see mine. I really am surprised that you CAN get anything off of Amazon. While I was searching for my method, they had machetes. Machetes!! I don’t think I would have the will power to use it to chop my ankle off but I know a chainsaw would do the job. I refuse to search for it because I know in my darkest of moments, I may just buy it. I’ll go all Scarface on my ankle and groin to sever my artery.

I am once again plagued by dark thoughts. All because I can’t sleep and I am in pain that is never ending. It just goes on and on.