Tag: chronic pain

6th year anniversary

by Midnight Demon, posted in cauda equina syndrome, CES, depression, medical

I had a little foreboding about today and it just hit me that its my 6th yr anniversary of my second diagnosis. In some ways I’ve come a long way. In others, not so much. Life six yrs ago was almost a piece of cake compared to today. I was working two jobs and now I’m not working at all. I’m walking ok but i have problems with my bowels and bladder surgery didn’t fix. I lost permanently i think, my ankle reflexes and gained CRPS in my Ankle/foot. I take less pain meds, probably less than i should be taking. I have learned how to get on with my life about living with this dreaded condition. I know there are times when I become so suicidal because of my B&B issues but they happen less often because I now know how to handle them better. It still hurts to have an accident and it’s not easy coping at times when you have depression.

So Happy Anniversary to me…

Ankle Chronicles, Part 2

by Midnight Demon, posted in cauda equina syndrome, CES, depression, medical

Been 72 hours since the pain in my left ankle started and the swelling has been intense. I have not been able to get the swelling down even a notch despite elevating it and putting ice on it. I have tried to rest but I get so antsy that I have to go downstairs to munch on something or to go to the bathroom. I hate going downstairs more than having to climb up. Going down I have to go one step at a time and because my proprioception (sense of sensing) is off I have to look at where my feet are before taking the next step or risk a fall down the stairs. I’ve been lucky so far as I have been able to catch my balance to avoid a fall but that is because I am holding the banister for dear life while I go down the 15 or so steps, one at a time like a little kid.

I remember I used to make fun of my childhood friend who went down the stairs one at a time, but that was back when we were kids. Now I’m an adult and don’t trust myself to go one foot over the other because my nerves are messed up due to Cauda Equina syndrome. It is a painful nerve condition that is caused most likely by prolapsed or herniated discs that affect the cauda equina (horse’s tail) bundle of nerves. These nerves are what controls all nerve and motor function below the waist. Because I was “lucky” enough to have this happen to me twice in 5 yrs, I am now left with permanent nerve damage in my left ankle/foot/leg, specifically, my peroneous muscles and tendons. These muscle and tendons are what causes my ankle/foot to go out to the left while walking. Because this is not normal walking, the muscle and tendons are constantly being inflamed by me pulling on them. They are not supposed to used while walking but I am forcing them to. Plus because I still have weakness in my ankle that does not help. This weakness when added to fatigue makes me walk worse.

Again the weakness was caused by CES, Cauda Equina Syndrome x 2. You never realize how much you take for walking for granted until it is taken away from you. I used to be able to walk miles without difficulty. Now I am lucky to go three blocks without pain. My life sucks. I hate not being able to walk for exercise or for traveling. Now instead of walking to the train station that is a mile away, I am forced to take a bus. I am grateful that I can get a seat most days and that I don’t have to stand on the bus because that just puts added pressure on my tendons.

Not too many people really care that I walk with an AFO (ankle foot orthotic) brace. Only small children will stare. Most adults won’t even notice. I went to my Aunt’s 90th birthday party a few months ago and though I was wearing my AFO, no one really said anything until I walked toward or away from them. But they are my family and love me anyway.

Because I had worked as a lab assistant, my job could not accommodate my restricted walking so now I am out of work. I am on disability. I feel like a sleeze bag because I can’t work anymore. It kills me to not have anything to do day in and day out. Most days I stay inside because I just don’t have the energy to go out, even if it’s just for a cup of coffee at Starbucks. Lately my time at home has been increased to the point that I might go out just to get a soda. Having to rely on the bus and bus schedules makes you regret having to go out. Sometimes the bus is on time and all is right with the world. Most of the time it is late. And it sucks having to stand and wait for it. Even though I can have a seat on the bus, there is no bench to sit on at most bus stops. And standing is truly what causes my leg pain to flair up. I take medication but only if I’m home. I stopped taking it when going out because it caused me to have dizzy spells and to feel out of it at times. Better to feel out of it at home than while out on the street.

And now it’s the day after I load myself up on meds to control the pain. I usually feel ok after I have a day of meds but sometimes all it talks is to go up and down a flight of stairs to aggravate my damn ankle/nerve injury. The “simple” act of going up and down stairs can be torture for me. People take it for granted until that sprained ankle or hurt knee is involved. Then they realize it is not as simple as one might think it to be.

So that is my chronicle for today. Thank you for reading.

Weather, Baseball, and Mood

by Midnight Demon, posted in depression, suicide

10-Sept-12

People often wonder if the weather affects one’s mood. From my experience since having an arthritic spine and suffering from mental illness, weather can certainly affect both. On sunny days, my pain from arthritis is less when the temp is between 40-60 degrees. I tend to like colder weather than hot/warm. I am a New Englander, born and raised in Boston so adapting to temperature fluctuations is a necessity. It might be 50 degrees one day and 70 degrees the next. Although I try to keep track of baramotric pressure, pain is usually my gauge.  The day before thunderstorms I am stuff and will have right hip pain, sometime with pain down the legs.

My mood on the other hand is quite the opposite of what the weather will be. On sunny days I am gloomy and downhearted. Mostly because I do not like bright sunshine. It can cause me to get a migraine just on the brightness alone. On these days I tend to stay in bed or my room because artificial light doesn’t affect me as much as real light does. Being outside on bright days always makes me feel down for some reason. Soon as it’s cloudy my mood will brighten even if my pain is increased. Sometimes when it’s cold and damp I can be in a bad mood but only because my pain levels have spiked and usually because I am incapacitated by it. It’s no fun having to stay in bed when you want to go out because you can’t move.

But I have found that despite this, sometimes moving about is a good thing. I used to and still love walking in the rain. I;, more apt to go out on a dreary rainy day because it compliments my mood. Gray skies and overcast always makes me feel less gloomy. Granted I am not a happy person. Happiness, like sadness, is a feeling that is likely to dissipate with time. Contentment on the other hand is what I strive for because it’s more realistic than the despair and anguish that depression and suicidality brings. Relatively few things make me happy. A nice mocha latte from Starbucks with toffee nut and caramel, my Red Sox boys in a winning year (this year is gone baby gone), and baseball season. I have noticed a correlation between the end of baseball season (end of world series or Sox season) with sadness more than any other time of the year, that is until Feb when baseball season starts to begin to get underway. Some people will call this SAD but SAD ( Seasonal Affective Disorder) is usually between Nov-April. My depression increases the beginning of Oct (when the sox play their last game) through mid February, which is outside the SAD parameters. So I have what is called BAD-> Baseball Affective Disorder or BDD-Baseball Depressive Disorder. Neither of these diagnoses will unfortunately make its way to the DSM-V (diagnostical statistical manual). Baseball just is not worthy enough to be classified as a major or minor mental disorder. That truly is sad. My psychiatrist agrees with me as what do you do when baseball season is over? How do you survive until spring training? Five months is a long time to go without this wonderful past time.

What I find exciting is you never know what the pitcher is going to throw. He may hit the player, catcher, or umpire. The ball might be foul, a hit, or a pop out. This is what keeps me sane, Baseball is my livelihood because it is America’s past time. No baseball and my already sucky mood becomes gloomier than a rained out game. On the days my Sox are not playing I will watch whatever game is on. Even if it is the stupid Yankees or as Red Sox Nation calls then, the Skankees, well maybe not all of Red Sox Nation, just me.

But I digress from my original line of mood and weather. I know most people love sunshine and hear but I don’t. Give me a cold gloomy day and I will be happier than a pig in mud. Take today. It was bright when I left the house at 9 am this morning. Then by noon it started getting cloudy and looked like it was going to rain. When the first rays of light came through my window I was very grumpy. I didn’t want to get out of bed. When I did, I grumbled, didn’t even take a shower, wanted to end my life and despite all that still got dressed and left my house. When noon rolled around and saw that it was getting cloudy my mood shifted and I felt relief. My contentment come back. I was as grumpy and could face the rest of the day. The temperature was neither cold nor hot, probably in the mid 60s and it was windy. Sunlight and me do not get along. It really makes me depressed where as a cloudy sky will make me happy. And when you have major depression, you will take any happiness you can get, even if it is on a cloudy cold day.

Grief

by Midnight Demon, posted in depression, medical, suicide

Been struggling the past few days. I have been thinking of my friend in South Africa who is struggling right now with grief from the loss of his best friend and soul mate. His blog details the pain he is going through and it made me think of my own grief I have with the life I used to have. Of being able to walk without pain, life without taking any meds other than for psych, and being able to work without worry. Now I have no job, walking is no longer possible for long distances and yet I still think I can do it if only if I try harder. I tried for more than a year working two jobs that were physically and mentally exhausting. I went from working 60 hrs a week to nothing in 16 months. Now I don’t know if I can ever work again because soon as I get stressed or the pain levels get too high, I have a psychotic break and develop delusions that I believe are real. Like cutting my leg, I know it will not cure anything yet I can’t help but feel there is a foreign body in it causing the swelling and if only that swelling was cut open, I will be healed. But no doctor believes me. They just tell me to take my little pink pill to quiet the voices down and suddenly the delusions become just that and I realize just how fricken crazy I am. I know one day I will give in to the internal hell I face every day and try and open my leg up to see what is inside this lump on my leg. It is the cause of my grief, of my suffering this raised bump that some days you can’t see and others you can.  My friend has a different kind of grief but I know he suffers the same way I do with this bloody nerve condition we share. It has robbed us of our sanity, our livelihood, and our dignity. It bothers us more than we let on to people because we have to put a brave front on all the time and minimize just how bad the pain really is.

The other night I was contemplating ending my life in a few days time. I know I can really do it. I have the equipment and all that is needed is just a time and place. I know that I can really do it but do I want to leave my friends and family, who I know will be better off without me than with me living? I am tired of struggling every day, of breathing in and out and knowing nothing will change. My contentment period has expired and I want to expire too. I don’t understand why I should go on living when all I do is suffer. People have told me I am a good writer but so far it has not paid the bills and let me live a life that I can call my own. I just have trouble with the fact that I am so miserable. I am a negative person. I cannot be a positive when I do not see the light of day. Yet I just continue to stick around because my friend in SA needs me, my nieces and nephew need me, my therapist needs me.  I feel like such a hypocrite when I am trying to prevent suicides when the only one I am truly trying to prevent is my own. I read about suicide day and night and realize that I don’t know how I survived all the attempts I made over the years.  Reading about suicide makes me realize that statistically I should be dead. Yet I am not. Grief has frozen my heart to love again, and this nerve condition takes every ounce of strength not to throw in the towel after each day. I would love to work again and walk around the block without hurting. But that is no longer possible. I walk with an AFO (Ankle Foot Orthotic) and it is my help aid and my hindrance. People see that I am disabled. It has taken me a year to come to this conclusion and it sucks. Realizing you are disabled is no happy feat. It makes you wonder when you ever will be normal again and after 11 yrs of dealing with the pain and agony of nerve pain, I called UNCLE. I had enough. My friend, bless him, still keeps the fight to support his family and his friend’s son. He gets around in a wheelchair. He has more pain than I ever would dream of but the difference is that his is controlled better than mine. The US frowns upon narcotic use and so I am limited in my pain relief. I only take it when I have pain that is an 8 or higher and days when it is on the cusp of being an 8, I try to stick it out. I don’t do this because I like to be in pain. I do this because the stigma around pain medication makes me. My family doesn’t understand the difference between addiction and dependence. Actually few people do unless properly educated or if they also suffer from chronic pain. I can tell you I don’t misuse my meds. I don’t take it to feel high or to change the way I feel psychologically. I don’t take more than what I am supposed to unless I am close to being in a suicidal rage because my pain is up there and I can’t take it any longer. This means I am not addicted to it. I can go a few days without taking it, but barely longer than that. I can’t say I am dependent on it because on days I don’t take it I don’t notice being sick or worse than what I normally feel. I am chronically exhausted by pain and mental anguish that I hardly notice if I am dependent on the drug. My mind doesn’t think, oh I have not taken any pain meds today so why don’t I take it for the hell of it. I just don’t think that way. Some people do and that is a tragedy. And those are the people I am mad at because they ruin me getting the help I need from pain management doctors. If these doctors truly were able to help me with this and take care of my pain, I probably would NOT have had to file restrictions at work and then be out of work because those restrictions were not accepted by my employment.  That is why I am out of work, because I can’t walk around the lab anymore. It is like a huge city block and walking around and around for eight hours just about killed me. Hell after four hours I was ready to collapse in pain and sometimes I did. I’d have to leave in the middle of my shift because the pain got so bad or I had to rely on my coworkers to bring me work because I couldn’t get up off the chair and get it myself.  It was at times humiliating to be in that kind of pain and not have anything to take for it and then go home and suffer all night long. The hours I lost losing sleep were many.  I would get some relief after a few hours sleep but then it would be time for me to go to work my next shift. I sometimes would call out if I felt I didn’t get enough sleep. You can’t be dealing with a person’s lab values and have no sleep that could cost them their life because I am too sleepy to pay attention. What is worse I could not take any pain meds while working so I had to suffer through my shift without any relief. It sucked big time but I had to be alert in my duties. I had to stay sharp.  As much as I sometimes hated my job, I do miss it. I miss some of the people I have developed close relationships with over the years I worked there. I miss the routine of work. This is my grief and it hurts like hell