CES – Page 63 – midnightdemons7

Spoon Theory Explained

Wed,8 Aug,2012, 2:53Thu,16 Aug,2012, 3:50 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

Sun,5 Aug,2012, 1:10 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 😦

knackered, short story about Cauda Equina Syndrome

Thu,26 Jul,2012, 2:18Sat,11 Jul,2020, 22:24 by Midnight Demon, posted in cauda equina syndrome, depression

Cauda Equina Syndrome: A complicated syndrome that often brings more questions than answers, more despair than hope. Questions like when will I have my old body back? Will my back/legs/feet ever be normal like they were before my injury? Will my bowels and bladder ever be normal and I won’t have to constantly think about the last time I went to the bathroom. These questions are always, if not in the forefront, are always in the back of the mind of those that suffer from Cauda Equina syndrome (CES as those of us call it). It is a neurological condition that occurs when the cauda equina (horse’s tail) nerves are compressed somehow due to a trauma injuries such as a disc herniation, fragments of the vertebrae, a spinal tumor, or some other injury that compresses the nerve, such as a surgery clamp. The cauda equina nerves ends around the L2 level where the spinal cord ends. The causes of this syndrome are many and as we have 5-6 levels of lumbar vertebraes, the different levels of damage vary. The most consistent rule is that soon as symptoms of weakness, unbearable pain, and/or loss of feeling occur, surgery should happen within 24-48 hrs.
Do we recovery after this? Anything is possible. Some of us do, some are left with permanent injury because treatment did not happen or was delayed or it was simply too late to recover. Some have seen recovery after a few months, a few years, some times more than that. Some have gotten worse after surgery as surgery itself holds its own risk. One thing that has gotten to be the never ending questions is, how do I live like this? How do I live with the pain, the never ending nerve pain that no narcotic can touch? How can I live when I can’t feel myself having a bowel movement or feel myself urinate. How can live with these dysfunctions, always in the back of my mind knowing where my feet are cause if I get distracted or am too tired, I will trip over them.
It has been eleven years since my first injury. Almost six since my second. My first diagnosis happened at level L4/L5. My second was at L2/L3, higher and more disruptive. It caused me to be where I am today, disabled to a degree that is permanent, more permanent than my initial injury. I do not know if all people that suffer CES x 2 will have what I have. I just know that I hurt, that I can’t walk more than a few blocks without debilitating pain, that I have to take meds everyday to live my life with some functionality. Otherwise I will lose my mind and be on a psych ward never to be a functioning member of society again.
The past year has been hard to deal with. I finally realized that my initial injury never quite healed the way I thought I did and so left me wide open for injury when I was hit the second time. Now while I am awaiting accommodations from work, I am doing what I do best. Writing my life story so it can be used as a voice.
By being a voice I can tell people who have been suffering with this condition that they are not alone with this. They have support in their pain and despair. We all have been through the learning to walk again, the painful spasms, the night time burning and shock pains that keep us up at night. The nights of lost sleep from the constant worry of being in pain and seeing endless doctors to find no relief or some relief. My voice can help answer the questions that arrive at each stage of recovery and when there seems like there is no recovery in sight.
It is an always constant reminder that you are not “normal” anymore. You have your good and bad days but a good day usually consists of making it to the bathroom on time or having some pain relief, even if it is for a few hours. A good day might be the day where you just collapse in exhaustion and sleep the day away because you were up all night in horrific nerve pain that just wouldn’t quit no matter how many pills you popped before bedtime. I still have not been able to find the right time of taking my doses. Though it has been a few weeks since the 2-4 am pain cycle, that doesn’t mean that it won’t be back. I think most of the time I have not been feeling too much pain is because I have been out of work the last month or so. Pain has become less but if I happen to walk too much or stand too long, I pay for it at night.
Most of the time, people think that you are fine because you don’t have anything physical wrong with you. I find that to be true because other than my foot swelling up, no one would know that my leg is hurting me so bad I can’t walk far or stand for more than 20 minutes. They might see the AFO (ankle foot orthotic) but that is what helps keep my foot aligned. So far I have not been questioned on this by anyone, but then this will be the first summer I will be wearing it. I got it in early November because I do not walk correctly due to the weakness in my foot. Instead of walking heel to toe, up/down, my left foot goes heel and swerves to go back to the toes. It has pulled my muscles and tendons so badly that when they flair up, I am in such agony, that all I can think about is killing myself. And this pain was 24/7. It drove me nuts because there was nothing I could do for it, nor was anything I was taking calming it down. I was on anti-inflammatories, narcotic pain meds, neuropathic pain meds, and still I was in bone crushing pain. All the tests, MRI and x-rays said things were normal. But if I was so damn normal, why was in so much pain??
Then there is the bouncing game where you go from one specialist to another hoping to get a new treatment, new diagnosis or just plain answers but all they can do is give you no answers and refer you to yet another specialist. My neurologist is good for this. She has sent me to a physiatrist, an orthopedic, and a physical therapist which all said they have no idea what is wrong with my foot. They have no idea what is causing the pain, be it from my back or from my foot (a mechanical problem as it turned out to be).
I have come to the conclusion that despite my many attempts to find the right doctor to see for my physical pain, there isn’t one out there. My last appointment this week was the last new doc I will see in a while. I am tired of being put through the tests and the endless questions just to be told maybe this might help, maybe not but go through it anyway. Seeing as I don’t have insurance at the moment, I say the hell with it. I cannot fathom going through something that might or might not help for six weeks and then be told, well at least we tried. Nowhere in the literature did I sign up for that. AND this is a NEW form of therapy so it might really not work at all. Not everyone is the same when it comes to pain. I don’t even fit the typical symptoms of what my neurologist diagnosed me with (complex regional pain syndrome) so how am I supposed to have confidence for six weeks, oh and did I mention this is a “drug free” program. I am supposedly weaned off my pain meds. SCREW that. I can’t function as it is without them. I can’t take a shower or go down the stairs or walk unless I take them. Living with this, Cauda Equina Syndrome, post (CESp) is life altering. Throw in mental illness and you got a time bomb of suicidality you don’t even want to think about. Most of my midnight demons comes from the pain I feel at 2 am in the morning. No doctor sees a patient at 2 am unless you are in the emergency room so of course my level isn’t astronomical at 11:40 am when I see a doctor or my psychiatrist. All I can do is shoot off an email at 2 am and tell them I am hurting. Sometimes I get a response, sometimes I don’t.
I’m done with seeing new doctors. As long as my PCP provides me with pain relief that is all I care about right now because otherwise I will end up 6 feet under. I can barely stand when I get up in the morning and no one understands. I don’t understand how the medical profession can know so much science and technology yet know so little about how to treat pain. I’m just getting fed up. Fed up and tired that no one listens and cares that someone already with a depressive condition is being made to suffer because of the “ills” of opioid therapy. Granted there are people out there who have addictions but these people can be weeded out if the physician just takes a little more effort in listening than prescribing to get rid of the patient. I still long for the day when I can page a doctor at 2 am and tell them I hurting because I really think then they will understand that I am not just some nut job but a person who is truly in pain and suffering a great deal but that day will never come. I will always be the one to suffer and as long as I do, whether it be physical or mental, I will have suicidal thoughts. I know that one day I will take my life by my own hand. I think at this point I am just too tired to even do that. Yes, TOO TIRED, EXHAUSTED to take my life, to end the pain and suffering caused by the damage of tiny disc fragments that compressed my spinal nerves for 5 long days. That was all it took to wreck my life forever. I often wonder if I would have finished my degree by now had CES not enter my life for the second time. I believe that this second occurrence is what truly disabled me, physically and mentally. I have more damage than I had before because a tiny fragment was left on my nerves for 4 days after my surgery to help me when I was losing control of my bladder. That problem was solved but then because of this tiny fragment, I was left with paralysis of my left leg, the leg that is now the vain of my existence. No one knows of this cauda equina syndrome, yet no one has suffered from it twice and been “okay”. I can still walk but I am tortured by it every day. Every day my ankle refuses to flex when I wake up and now it seems I have to take pain meds just to get out of bed and down the stairs to use the bathroom. That is if I don’t have to go urgently, then it’s screw the pains meds and go one step at a time down the stairs. This is what my life has become. Not one doctor in the entire city of Boston wants to help me. Mentally I can’t really complain. I have the best psychiatrist I could ever ask for. But medically, I do not have anyone I can truly trust. People just take it for granted that after surgery they will be ok. But no doctor deals with the aftermath of traumatizing surgery and the pain that comes with it. I am sure if I go to my surgeon today he will either want to do another one or refer me to a “pain doctor” for an injection but injections in the spine have not been shown to be useful. They might work in 50% of the patients but not all and some may even be harmed by this practice. I call it a practice of negligence.

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