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…

Pain sucks no matter how you slice it

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 😦

Hospital

I have been back to the psych hospital for the past few days. Today has not been a good day as I had some incontinence that has left me feeling so devastated all because I couldn’t get to the bathroom on time. My mood is so bleak. I just am constantly hounded by thoughts to end my life. My life is no longer worth living to me. It can’t be with all this misery and pain. I just want it to end. I want the psychache to stop. I just cannot live like this anymore. It is heartbreaking to continue to live when your chest is so heavy from burdens (real or imagined it doesn’t matter). You just wish you could stop breathing or make your heart stop beating. But it doesn’t work that way. I am so full of despair my eyes could pop out. Maybe that is what I could do…pop my eyes out to end my life but if I fail and end up blind that will be worse. It will be another failure. And that is what stops me from ending my life most of the time: FAILURE. I am afraid that is I fail and I live I will be worse off than I was. Nothing hurts more than a failed suicide attempt. Nothing!

You might be wondering what it’s like. It’s nothing like the cuckoo’s nest. You have checks, which is the adult babysitting system of the hospital. Then you have a check in or contact person you talk to during the course of his or her shift. Sometime you get a person that cares and will listen. Other times you get a real ass who doesn’t know shit but tried to play it off that they know everything. These kind I avoid.

During the week you have groups that you are supposed to attend but I rarely do. Most center around a therapy that I do not like and think it is bullshit. Or the group is some type of arts and crafts but I’m sorry, I am an adult not a five yr old. So I do adult things like read books or write in my journal, solitary things that no one can bother me with. I’m happy with that. The hospital takes the stress of self harm away that you don’t realize is there. It is the demon that keeps me awake at night and haunts my waking moments…

Jupiter is a funny planet

Been struggling with voices most of my life and think now I am going finally whacko. I just can’t seem to break out of the psychosis and firmly believe that if I cut my leg open, my problems will be solved. It is curious that I miss one dose of my med, that little pink pill that holds the key to my sanity and all hell breaks lose. I can’t fricken sleep because my head is a jumble.
I have been watching the show ‘perception’ on TNT and can’t help but think that is me. I don’t see things but I just hear the same voice and when I’m in a psychotic state that voice becomes another person, another tone, another character all its own. No this is no altering of egos, least I don’t think so only because I interact with them on a regular basis that truly is what I hear. I can have a conversation all on its own merit based on whatever. Sometimes it is intellectual, like the show portrays, sometimes it is just the criticism of what I am doing. Constant hounding of not making my eggs “right” or walking the wrong way to get somewhere, to why am I taking this bus versus that bus, all the fricken time. Even while I was walking in my own home town did I get this criticism. I can’t go anywhere without these voices hounding me. It is maddening but yet if the meds work too well and I don’t hear them, I feel lonely without them. They are my invisible friends…I know it sounds pathetic but it is true, though when they tell me to cut, they are not my friends and usually that lands me in the hospital which I don’t like. I hate going in the hospital but sometimes I need to be there because only there do the voices let me be and I can trust that the meds I am given will make these bad voices go away.