So this is the 18th month that my peroneous muscle has been swollen and no doctor can give me a reason why or make the swelling go down. Tonight I was hit with self harming urges to filet open the swollen part but before I acted I decided to page my psychiatrist. It has been 5 hrs and I still have not heard from her but the urges have subsided for now. I think it is part of my delusional self that I think the root of my problems lies in this swollen tissue. If I just remove it, maybe I won’t be in so much pain. I want to write an email to my doc and clinically explain the significance of opening the tissues so they can breath and maybe the bad part will come out and the swelling will finally go down. I also have swollen ankles but these are easy to ice and elevate and when I do the swelling does go down. For my leg inflammation, I have yet to find “the” ice cube to decrease it nor the right elevation level to make it go down. According to my MRI it is interstitial swelling so only if I cut will the swelling become decreased, least in my mind. The voices have been on my side and been trying to cheer me on but fear of cutting and not being able to control the bleeding is the only reason I have yet to perform this operation. I do not know how to sew myself back up once I cut and if I do need stitches, I will have to ask a family member to take me to the hospital which will not be fun. I hate going to the hospital to get stitched up. It always leads to a psych eval that is pointless. Most of the time they just want to know that you did not do this to kill yourself and that you will not do it again. I am the master of this type of talking as I have been there on many occassions.
Another reason I have not done it is because it will be hard to hide. It is summer time and I have absolutely no intention of wearing jeans or long pants as I will melt. Heat and my nerve condition do not go together.
So I have a nice lump on my leg that is like a boil on my neck festering away and I cannot lance it as much as I would LOVE to…
Tag: cauda equina syndrome
killer bees, 10-dec-10
The past three days I have been thinking about what to write on here. My topic was going to be about the killer bees and how they always seem to come out when I want to go to sleep. The bees aren’t real. It is just this buzzing sensation I get because of the nerve damaged caused by a disc fragment in my spinal nerves. I have been living with this condition, called Cauda Equina Syndrome (CES for short), for the past 9 ½ years. I actually got it twice. The second time was in 2006. I had it easier the second time around because I knew what to look for and how to get the proper care as well as what I knew to expect. That helps big time as the first go round didn’t go well. I was only 25 yrs old when I got it. My leg gave way one night, 12 hrs after seeing my chiropractor and got worse in the next 72+ hrs since then. I had seen a doc the Monday as I could barely put any weight on my left leg and all the doc did was give me pain meds and a pain shot. He didn’t tell me about warning signs or nothing. A couple days later I was to have an appointment with my psychiatrist, but by then the damage had spread to my right leg and I could feel my toes on either foot. I had foot drop in both, but the worse was my left where most of the damage was. I couldn’t walk at all. She wanted me to call an ambulance right away but because of the current detours, I couldn’t be 100% sure I would end up at MGH so I decided to wait for my friend to come home and take me. I was at her house anyway and didn’t have the key to lock up, plus she had 2 dogs so I didn’t want to leave the house open to them or have an incident where they attacked the EMT’s. I know I added more time to the clock, but I didn’t want to go to some rinky dink hospital and then be forced to go to MGH in worse condition. All this time, I just thought I needed some good PT and pain meds and I would be good as new. I couldn’t be more wrong. Soon after I had my MRI (after being in the ER 12+ hrs and being up for 24), the radiology tech’s face was ghastly. He said that I shouldn’t move. I wanted to tell him, “buddy, if I could walk, do you really think I would be in this wheelchair???” 3 hrs later I was in the OR. My L4-L5 disc had ruptured. It was the size of an almond compressing my cauda equina nerves. It took me a week just to wiggle my toes a little bit. I had to learn how to walk again, which is probably fine if you are a kid. You can fall easily and not worry about doing damage. If I fell, I was afraid I was u going to end up back in the OR. I had to wear orthotics called AFO’s to keep my feet where they were supposed to be while walking. I had a long recovery. In 3 months I was using just a cane to get around. I still have the walker. I hope it continues to collect dust but you never know. I was still having back pain all throughout this. It wasn’t until my doc put me on oxycontin that I really got better. I am off it now for reasons I won’t go into, but it really saved my life. I doubt I would be able to work 40+ hrs a week now if I hadn’t been on it. It helped me heal and push through the pain so I could get well.
Six months into recovery, the nerve pain started. My foot and left side of my leg from the outside burned something fierce. This lead to another wonderful med, Neurontin or gabapentin as its generic name is known. Some people cannot tolerate this med and have had bad side effects. My system loved it and it has worked wonderfully. With a high dose at night, I was almost pain free most of the day. Now, not so much. I never thought much about the difference between brand name and generic, but with this med, there is a huge difference. Once dose is usually all I need (on brand name). Generic I need a slightly higher dose to get me the same relief. But the one thing it doesn’t change is my sleep. This nerve pain is not something to mess with. I have some nights where not even the bed sheets can touch me. Other nights, just before drifting off, the deep pins and stabbing begins, jolting me upright. It drives me crazy because unless I take the gaba, I will be in pain. The side effect is that it takes me a long time to wake up after dosing. Sometimes I need at least 10-12 hrs of sleep to sleep it off or my brain is just foggy. With my job, I need to be able to be places early in the morning so I can’t take it every night like I need to. Plus with me taking it with my other meds, it really knocks me out.
I have been having a lot of suicidal thoughts over the past few years. I have written so many wills and good bye letters that I know one day I will just end my life. Most of it is because of this pain I deal with every day and I’m not really talking about the physical pain. Mental pain is with me every day, every second. There is no escaping from it and there is no drug I can take to relieve it. I have a high pain tolerance. I just realized over the past few days that because I take ativan, I don’t seem to get the recurrent thoughts of suicide in my head as much. I think most of it is because of my physical pain caused by CES and the downfalls of having to keep track of things that no other “normal” person would think of, stressing me more than I realize. How many people do think when the last time they urinated or had a bowel movement. If I don’t keep track it could be a week before I had a BM or significant long hrs since my last void that I am going to have an accident or a leak, well mostly a leak. I only had one accident and it was my fault as I should have gone to the bathroom before going home but I thought I would make it and I didn’t. Now I know that I can’t ignore those signals anymore and it stresses me out.
Working long hours and days does help with the depression. It keeps the thoughts out that lead to planning and contemplating when I will and how I will kill myself. I know that I will someday and have already begun to do so. Maybe this will be my last writing before I die to tell you what really goes through the suicidal mind up until death.
Ankle Chronicles
Normally we think of ankle biters as little kids that cling to your legs as you go walking around the house. No, the one that I am talking about is something that is more painful than that. It is called nerve pain that keeps you up for hours on end. It is this physical, stabbing, crushing, jolting pain that tears at my ankle and foot each night. Sadly the only cure for it is rest as the reason for it is because of repetitive movement of my ankle. Yes, walking, standing, going upstairs is a torture for me. It started more than a year ago. I think it started with a simple sprain ankle but with cauda equina syndrome, it is anything but simple. I slipped on the ice walking to work on an icy January morning and a month later, I was in excruciating pain that made me think of suicide nearly every day. I don’t remember too much but I shudder every time I think of being in pain that was constant. I was in pain twenty-four hours a day. Boots, braces, and splints didn’t help. The only thing that did was narcotic medication. Without these pills you might as well write my death certificate.
Sometimes ice can help and it is the AHHHH feeling like I didn’t realize it was “hot” and the ice cools it down, making it feel really good. Today I did too much walking and I am hurting really bad as standing is really causing me problems. I have gone up and down the stairs numerous times since coming home at 3 o’clock and probably will have to go down another few more times as I know I will need to empty my bladder. My bedroom is on the top floor while the bathroom is on the second. Kind of makes things difficult when you have a disability. If I had the money I would invest in the chair lifter stair thing you see advertised on TV for old people. I realize I am no longer young even though I am only in my mid thirties. I think being in pain ages you. I know that I didn’t feel old until all this pain started happening and it is a chronic reminder that I am no longer a healthy person.
So this ankle, my left, which we will call Lefty, is the current source of my discomfort more than my aching back at times and is the reason why I stated above that I need pain medications. Every test that has been done from Xrays to MRI’s have been negative for anything physically wrong with it, except for the swelling which no doctor can explain. They know that I have inflammation as what else would cause this swelling/edema. Yet despite taking an anti-inflammatory, a pretty strong one (ketoprofen), the swelling remains and does not go down unless I ice and elevate it. It sucks being cooped up all the time because only when I am off it do I get relief.
Spoon Theory Explained
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…
midnightdemons7 
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