Pity Party

Pity Party

I rarely have pity parties. But tonight, something embarrassing happened to me that has been happening for a while and it just hit the wrong nerve. It depressed me because despite recovering from cauda equina syndrome (CES), not once but twice, I was ultimately disabled because of CRPS and chronic pain. Whether CES had a hand in it, I don’t know. It is doubtful as my last surgery was four years before my injury, a sprained ankle that was caused by intense spasms of my foot and ankle. That surgery was higher up the spine than my first surgery so I am not sure it affected my ankle and foot. There are a lot of what ifs, and I was pondering them today. Then the embarrassing incident happened and it hit me in the gut.

I can’t do much over what I have been dealt. I try to move on as best I can despite horrible pain. I am grateful my hands and upper extremities are not affected by pain. I don’t know what I would do if I couldn’t write anymore. I know there are speech to text things but I like the feel of pen on paper or the keys of the keyboard. I have my outlet with my blog to talk about how crappy the pain is and how it brings on my suicidality.

I was talking to my voices today, as I often do. We were discussing the use of testosterone and the effects of what they would do to me. That is if I don’t kill myself when I plan on it, which is soon. It all depends on how next week goes. I am nervous about it. I have even thought about assisted suicide, which may mean leaving the state and going to Oregon where it is legal there. It might take me a few months to save up for it, but what the hell. I can’t seem to get it right on my own. If a doc can prescribe me something to end it, that will help me. I don’t want to be in this level of pain or worse as I get older. It’s bad enough that just making my bed hurts. Making breakfast should not cause pain and I’m not talking something fancy, just making scrambled eggs and toast is a chore. I wanted to go to Starbucks today but my back was too painful because of the shitty weather, which is going to continue until tomorrow afternoon/evening. I’ll probably be in pain the rest of the week, more than my usual pain.

Right now my foot feels like it is being crushed. I’ve had to take my strong pain pill to quiet it down. That was an hour ago and I am still hurting. I am so frustrated that I have to wait for meds to work. Sometimes it’s 45 minutes. Others, up to two hours. I play with the Neurontin dose because I don’t want to be foggy the next day. I’ll take anywhere from 600 mg to 1200 mg a night. Some nights I don’t need it. It all depends. But when I flare, all the guns need firing. Pain today has been mostly in my foot. But my ankle hurt briefly. It piggybacks going up and down, from foot to ankle and back again. Sometimes it is the same pain, sometimes it’s a different pain in the different area of my foot or ankle. I never know what kind of pain I will get. The bone pain is the worse because that is harder to treat. It can be my malleolus or the metatarsals. And is always severe, like can’t move at all severe. I wish there was just one pill I could take for all of the CRPS pain. But there isn’t. And then there is an MGH resident that says opioids don’t work on pain at all. I like him to have CRPS. The meds might not take away my pain 100% but it brings it to a bearable level and that is all I need. Lately my pain has been rampant, a 7 or higher. Used to be a 6, now a 7 is my new “normal”. Before then, it was a 3. That was at least two years ago, maybe? What happens when my pain is a 10 every day? I probably won’t be alive to know. I hope so, anyway.

safety planning by Stanley and Brown

hey all,

I couldn’t find the link I used so I created one. here you go.



another month of existing

Another month of existing

Despite being suicidal for almost 16 days straight, I lived to tell the tale. I honestly don’t know what gets me through the hardest of moments when I am in so much pain and all I can think about is death. I think fantasizing my death has gotten me through, only because I was so immobilized by pain, I couldn’t act on my thoughts. Then the next day, the pain was down and I didn’t feel so terrible. I didn’t feel like ending my life.

Sometime in the beginning of September or the end of August, I thought that if I had 41 consecutive days of suicidal thoughts, that on day 42 I would end my life. If by some chance, I had a day that I didn’t think those thoughts, I would have to start all over. I kept a spreadsheet of the days. Some nights when I was in pure agony, I would bargain with myself saying just x many days more and then I would end it. I kept these thoughts pretty much to myself. I had texted my therapist this plan but we never talked about it. I don’t remember if I let my psych know either.

I don’t know what really changed that stopped the suicidal feelings from occurring. I still had pain every day and night. But after my PT evaluation, I felt like things could be better. I was sad that the days of me working were truly over because too much time had past for me to recover. I was diagnosed too late with CRPS, Complex Regional Pain Syndrome. Now I just want to be able to make pancakes without having to take breaks in between the prep, the mixing, and the cooking. Small stuff but it would be a goal. I left the PT office feeling a little hopeful that things might change for the better. It didn’t take away my suicidal feelings completely. I still thought about ending my life, but there was no urgency to it. I just put it in the back of my head.

Suicidal thoughts have become so much apart of my life that I can’t imagine my life without it. Will I my life end one day at my own hands? I don’t know. I think so and have felt that way for quite some time. Little things stop me. My nieces or nephew’s love and care. A friend online that needs me. Having a low pain day so I could get out of the house to have my espresso at Starbucks. Being able to shower, make breakfast, and then go out to do what I have to do. It doesn’t happen every day as some days I can barely get out of bed, either because of pain or my mood. Sometimes both. Sometimes a good word from my therapist or psychiatrist is enough to lift the heavy coat to make it through the day. I honestly didn’t think I was going to make it through September without making a suicide attempt. But I did.

Tomorrow starts a new month, with the same challenges. Hell, I have appts all this week with no rest days at all. It’s going to be hard. I hope it doesn’t set me off in a flare for days on end. The weather is also going to be cooler. If it remains stable, I should be okay. If it fluctuates more than 10 or more degrees, I am going to hurt more than any activity that I do. I have a lot of appts this month. I don’t know how that is going to make me feel, physically and mentally. Dealing with chronic pain every day is difficult to say the least. I have mixed feelings about this month. I hope that I survive and I hope that I die. We’ll see if I make it to Oct 31st.

My Thoughts on Zero Suicide as a Person with Lived Experience

My thoughts about Zero Suicide as a person with Lived Experience

There has been a lot of talk on Twitter about Zero Suicide and it’s mission to reduce the suicide rate to zero, because 1 is just too many. At first, I was appalled that clinicians think that is possible. I for one think that it is outrageous because there is always going to be someone who dies by suicide. Maybe not in their organization but outside their organization. But then I learned that it’s not an individual’s practice but an organization or health system that strives to achieve this goal. They have trainings and meeting with those in the suicidology world.

Something kept bugging me about this. I kept quiet because I didn’t want to anger those that are for it, though I think there are a few blogs that I wrote about it before I understood the mission. While talking to a friend that is a suicide loss survivor, the bells went off. She said that it goes against Shneidman’s questions, where do you hurt and how can I help?

I am a big supporter of Dr. David Jobes work with his framework called CAMS (Collaborating, Assessment, and Management of Suicidality). I don’t know if Dr. Jobes trains these Zero Suicide clinicians. And even if they are trained, I am not sure it will be used. Most clinicians have the attitude that their skills on suicide risk are good enough when it could be faulty. Worse, they go through the training yet don’t use what they are taught. That drives me up the wall. Why bother going to a training (unless it’s a mandatory thing) if you aren’t going to take away from it?

I really think CAMS is a tried and true framework to prevent suicide based on my experience of using it in my former therapy. I also used the Suicide Status Form. Unfortunately, my therapist did not want training in CAMS and we drifted apart, thus ending our relationship. We did, while we worked together, use the initial and tracking forms but unfortunately, we never got to the outcome form. She wasn’t committed enough to see it through and that kind of pissed me off. Every time I had a suicidal episode, she just wanted to know one question on the form, The one thing that would help me no longer feel suicidal. It is an open ended statement where the client fills in their thoughts on the matter. Unfortunately, I could never come up with a satisfactory answer as I really didn’t know the reason for my suicidality. I just wanted to die and that was that. I wrote a blog about CAMS if you would like more information about how it is formed and the use of the Suicide Status Form.

I went on the website for Zero Suicide but could not seem to find the specific training that they went through. From what I gathered on Twitter from their live tweets, some of it is CAMS and some of it is using risk factors for suicide. Unfortunately, risk factors alone are not predictive of a suicide attempt. CBT has been useful in reducing suicide attempts but not all clinicians are trained in this modality. The book by Craig Bryan on CBT for preventing suicide attempts is a good book to learn more about it. I also wrote a review on the book that you can see here.
The other thing that gets me is that no where among Zero Suicide is there talk of a person’s psychological pain. There are measures, if you look for it. Dr. Holden at Queen University in Canada has created a scale to measure what Dr. Shneidman calls psychache. See my review on the research article for more information. I think it is a good psychometric to gauge a person’s level of suicidality and pain, which ultimately leads to thoughts of suicide. This must be included in any talk of preventing or intervention of suicide and also postvention, should a suicide attempt occur.

My final thoughts of Zero Suicide is that it is a novel idea but as Dr. Shneidman says, “How many suicides do you want, and I say I don’t want any, but I want there to be the freedom to do it. I study suicide but I am not pro-suicide. I’m for suicide prevention.” I share his sentiments. I do not like the talk of “suicide is not an option”. To me, that is hindering free will. I do hope the rate of suicides goes down, but the way that health care and mental health are going, I think there will be more before it lowers, especially among the chronic pain patient population.

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!