Tag: chronic pain

Spoon Theory Explained

by Midnight Demon, posted in medical

I had someone in my support group share  Christine Miserandino’s story of her “Spoon Theory”(http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) and I have then passed on this theory to my countless friends and support groups to pass on the message, “but you don’t look sick”. I have shared this with my therapist and for the past three years, she has given me a starbucks mug filled with spoons because she knows there are days that I do not have enough.

The story that Christine portrays is simple. Every time you do a task that a healthy person that does not suffer from chronic pain or major illness, such as arthritis or mental illness, such as depression, a spoon is taken away. You are given 10 spoons I believe. So taking a shower, lose a spoon, getting dressed, lose a spoon, etc until by the time you have done your daily living activities, you should have a spoon or two left, sometimes not if you are in pain.  For me, just waking up requires a spoon. I wake up most mornings and the first thought I have is to kill myself. The next thing I do is I have to stand and then go down the stairs to the bathroom. These days this would require 2 spoons as just standing causes me pain. I often have no choice but to bear it and go down the flight of stairs to the bathroom to do my bodily functional duties. So this requires another spoon. Going back up the stairs to my room requires another spoon. So before I have even brushed my teeth, made breakfast, or showered/dressed for the day, I have used three spoons. I think you know where this is going. By the time I have my sneakers on and am ready to leave the house, I barely have any spoons left and you cannot borrow anymore for the day.

My days are mostly grin and bare it. I am currently out of work so that takes the trouble out of getting dressed out most days I do not leave the house unless I am really in the mood for a coffee at my Starbucks.  But even on the days I am just lying in the house I am bored and like I have said, even before I get back to my room after going to the bathroom, I am already 3 spoons down for the day.  Getting dressed and deciding what to wear takes extra effort. What normally took me 10 mins now takes me 20 mins to do. Twenty minutes to decide what to wear when looking at a pile of clothes. All I need to do is pick one pair of shorts or jeans and put them on but that decision is agonizing.  After choosing which one I will wear, I then struggle to put them on. I think that is the reason why it is so difficult to decide because some jeans are easier than others to put on and others you just have to struggle with but when you have a foot that doesn’t have normal range of motion, you are often balancing on your good foot for a while struggling to place the bad foot into the damn pant leg. While this might be seen as funny it is not. The potential for a fall is great and that would not be funny. I am glad I only have two pairs of sneakers to wear, those for my brace and those without.  The pair without I sometimes have to give my ankle a rest as the brace irritates me and walking consecutive days can lead to ulcers or other irritations on my already numb sore ankle.

So now I am dressed and all I want to do is go back to bed but I want my coffee so it’s off to the bus stop. I make sure I have my phone, headphones, watch, journal, pen, and keys which makes up another spoon for remembering all this because if I forget, it is multiple trips up and downstairs until I have these four items.  Walking to the bus stop is another spoon. Waiting doesn’t really count as I can usually sit and wait as there is a bench there or stairs on the neighboring house I can sit at. Provided the bus isn’t late, the latest I am waiting is twenty minutes as I usually get there early to make sure I don’t miss the bus should it leave early or be on time.  I’m usually listening to my music, what ever I am in the mood to listen to which is usually country, unless I need something a little bit with an edge, then it is rock.

When I arrive at my destination, another spoon is taken as I need to walk to my coffee house. By this time I am really tired and need a nap but you have coffee to wake you up so I go. If I am really restless, I go back to the bus stop to go home. I might go to CVS to get something like powerade or something to eat. If I’m not restless, I will stay while I drink my coffee and write in my journal or write something about how my day is going so far. If it has been more than a few days I try to give a recap of my activities so that I know what transpired.

By the time I am on my way back to the bus stop, my ankle is usually really hurting by now. If I have a pain pill I usually take it but most often I forget to bring it with me and have to wait till I get home to take it. Another spoon. Then it’s the walk home and by the time I reach my door, I am beyond tired and need a nap and meds. Yet I haven’t done anything except get a cup of coffee. This is what I go through on a daily basis. This is what my life has come down to, to use my energy to get a cup of coffee or stay home and do nothing but play my facebook games and maybe write something in my journal. I keep two. I don’t know why I do. One stays in my room and the other travels with me to the places I go. I used to write all the time but now my writing is limited by how much energy I can put into it. And by the time I am back up in my room, I think I am in the minus category of spoons…

Pain sucks no matter how you slice it

by Midnight Demon, posted in suicide attempt

Since yesterday at 6 am I have been in pain with my ankle/foot, all due to the lovely nerve condition I have called cauda equina syndrome. I have the risidual effects of it and it sucks. No doctor can do anything about it and I’m going insane. So seeing as I can’t do anything about it until maybe my pain meds kick in, I’m blogging about it.
Being in pain for the past 24 hrs sucks. I couldn’t wash the dishes in the sink, can’t shower, couldn’t go to my cousin’s graduation party today all because I had crappy sleep and am in a really bitchy mood. I’m usually an ok person but lately I have been getting more and more pissed off about anything that is said the wrong way or looks the wrong way (and I don’t know what way is right by the way). I just know I am hurting and no doctor cares that I am in pain 24/7. Sure I have a lot of friends that care and would love to see me not suffer as much but other than soothing my aloneness, they really can’t help the gnawing, aching, bursting bouts of pain that I get. It is no longer nerve pain because my dear friend neurontin would happily take care of it. Nope it is a physical pain that requires the use of narcotic agents that everyone says is bad and addicting. Here is where people go wrong between addiction and chronic pain. See those with chronic pain rarely abuse their narcs nor do they get high off of them. If they do, they probably are not in the type of pain they think they are in. Addicts seek out pain meds to get high. They don’t have pain they just need something to take their jones away and always require higher levels of meds do it in. I am in the chronic pain categrory and I can tell you I rarely take more than 4 pills a day. But seeing as it has been almost 48 hrs without relief, I’m going to take my 5th pill of the day to get some relief I hope. Because of I don’t get any relief soon, I know the psychosis is going to start and then things are really going to go bad. Mostly the psychosis is because I am under a great deal of stress and being in chronic pain is a huge stressor.
Sadly before this condition I thought being in physical pain was better than psychache. But it is not. True there are analgesics to help ease the physical pain but not when it goes on for hours on end. The only time I can get some relief is if I don’t move my foot/ankle at all. See there is a muscle/tendon that I’m constantly inflamming and it is why I have this pain. It is called in medical terms the peroneous brevis and longus muscle and tendons that are hurting me. Again all because of nerve injury because I have ankle weakness which causes fatigue which then leads me to walking whatever way I want to keep walking or going up and downstairs. I hate it but nothing can be done about. No surgery, no injection, nothing. Nothing even shows up on an xray or mri but that is where the pain is or is it along the S1 dermatome? I don’t know and don’t care. I’m just tired of being in pain every hour of the day for days on end!!
See the psychosis is bad because the voices have been telling me if I cut the tendon, I will be better. It will solve my problems. Only thing is if I cut I might not be able to stop the bleeding so that is why I haven’t done it yet. I am that desperate for pain control I would take a razor to my skin and excise the bad stuff to alleviate it…
So no mattter how bad I want to slice and dice, I have no measures to control the bleeding and I really do not want to soak my bed or my rug with my blood. Only option I have left is to suffer…and blog about it 😦

Invisible disease

by Midnight Demon, posted in suicide attempt

Depression and chronic pain can be ckassified as an invisible disease because even if we tell people about it, and unless we look it, they are not going to believe we are in pain or are depression. Why? Because we look and act like everyone else, “normal”. We don’t act like a psychopath so therefore we are “ok” and should cheer up. I hate those 2 words. And it’s usually followed by “things could be worse”. I want to tell you if someone said that to me right now i’d deck them and tell them yea, I’m planning to kill myself so things are already worse ya moron!!
A friend of mine pissed me off, actually two did within the last 24 hrs. All for the same reason, they don’t think I’m a disabled person. I admit that I don’t like to be in that category but it’s taken me 9 months to come to the realization I will never be happy nor will I ever walk normally ever again.

I’m all ready so depressed I have had two hospitalizations in 3 months for psych. I’m constantly suicidal yet no one sees it or wants to hear about it. I try not to think about ending my life but it has become so automatic for me now soon as something bad happens it is the first thing I think about. I want to be dead because I simply do not find life worth living anymore. I’m so dead inside that I just wish my brain would turn off permanently. But that only happens like never. They say that is you meditate deep enough you can start to regulate your breathing and heart rate but it takes a lot of practice and patience. I don’t have time for that. My only objective would be to control it to stop it, which soon as I passed out adrenaline would kick in and I would start breathing and my heart rate would be back to normal again. Now putting a plastic bag over your head, that is something I’m toying with. A neighbor was found dead in the basement that way. It has been stuck in my mind for months now. And he was good too. He tied his hands up after placing the bag over his head. That is what I was planning to do with my hanging plan, place handcuffs on before jumping and strangling myself. I don’t know why I am writing about this but I am and I am sorry you are reading my deranged suicidal thoughts but this is who I am. My suicidal career has taught me a lot of things over the years and that is a good lethal plan is much better than a non lethal plan.
Speaking of which, my PCP is now scared that I might overdose on my pain medicine. I told him I am more worried about the tylenol content than the pain medicine ok. I don’t want to try and kill myself, fail, and then die a painful death because my liver fails on me. No thank you!! I then told him about the plastic bag. He still said that if I feel really blue and want to overdose to call him. He hears me soooo well. Here I am telling him I will die with a bag over my head and he still thinks I’m going to take pills. Wtf. And they wonder why the health care is so poor. Because doctor don’t listen to their patients. Hell least mine asks about my suicidality more than most doctors will. Some doctors are too afraid thinking the myth that if they ask they will be putting it in their patient’s head…

I guess I am done with my rant for now even though I know I went completely off topic with the title. But if my doctor was able to physically see my suicidality or my pain, I bet he would have no problems treating me and maybe he would have a little more compassion and empathy and possibly trust me when I tell him I’m not going to OD.

It’s 4am and I’m hardly breathing

by Midnight Demon, posted in suicide attempt

Just got finished with a couple of episodes of watching season 2 of criminal minds. I have fallen in love with this show though it is kind of creepy. I’m not sure which is freakier…that this fiction is whacked and someone thinks of this stuff or that it might actually be true and there are more serial killers/rapists/or more than I would like to think about.

The last few hours, my gastritis has been acting up. I wish I could say that it is keeping me awake but as tired as I feel, I am just not sleepy. 
I have been in a psychotic state the past few days, having weird thoughts, paranoia and delusions. 
I try not to give in to the voices but sometimes it is very difficult. It’s 4:30 and all I can think about is death. It is a constant struggle. With my nerve condition, CES (Cauda Equina Syndrome), I have had a bladder accident today that always sends me off the deep end. I know that sometimes sitting causes me to push on the bladder causing urine to come out. Because I have been on narcs and anti-psychotics, I have had some retention and don’t really know when I am full. I find it humiliating to find wet pants and not know it all the damn time. This week is also my 11th anniversary of getting this blasphemous condition and with every bladder or bowel accident, all I can think of is that another disc is going. 
The tension in my neck and shoulders from worry is causing my arms to feel weak at times. I can no longer hold the phone for more than 10 mins with out my arm going numb. And I feel that if I have cervical herniations, I will just kill myself. My only saving grace has been my nieces and nephew. I know they will not be okay even as much I try to think they will be, that they will be resilient enough to deal with my loss.

I have been trying to get a hold of my pdoc but no response. I guess she is too busy for me and it hurts. I have known her for 19 yrs now, since I was 17 and now I feel like I need to see another doc but then she knows me better than anyone. I know that the stressors of last week with the screw up of my benefits set the stage for this psychotic break. I just hope that I can getit controlled before I have to seriously consider going inpatient again. 
My fear there is that they will mess up my meds and then get it straight the day I get discharged. And besides, the docs there will most likely want to try a new expensive drug I have never been on to deal with my psychosis. No one understands the pressure of this and knows what kind of hell my head goes through. Yes, my physical pain sucks, but this madness is worse than that. Least I know that a vicoden or dilaudid can calm it down. 
Any type of stress and boom, I am crazy. Typical “normal” people become anxious or nervous, maybe even have anxiety attacks. Me I just become psychotic. The voices get louder, I talk to myself more to give in to their endless questions, criticisms, and observance of who is going to kill me or saying negative things about me. Weird thing is that every time I get psychotic, it’s different. This time in addition of them reading my thoughts, the conversations continue and no one knows what I am talking about. The conversation in my head gets externalized and the people around me whom I am carrying on the conversation have no clue what I am talking about. Sometimes it is of an intellectual nature, such as the Maya or some history that I have read and think that they know about but truly they have not read it but I know they have because the voices have. I know it is weird to think this but I know my thoughts are amplified and people can hear it and maybe the voices too. I don’t know maybe it is just part of the madness.

It’s now 5 am so I am going to try and get some sleep for at least 6 hours as I need to get up for good old therapy…