Category: medical

disability

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, depression, medical, mental disorders, mental illness, mood disorders

For the past eighteen months, I have been in chronic pain with my left ankle. It started as a sprained ankle and blossomed into CRPS, Complex Regional Pain Syndrome. I have nerve damage in this ankle from Cauda Equina Syndrome (CES) and CRPS affects 80% of those affected with this condition. In my case I am repetitively inflaming my peroneous muscles and tendons as I do not walk correctly. The result is constant burning and swelling of my ankle and foot.

This condition limits my walking due to pain. In December of 2011, I decided to go on medical leave of absence to try and give myself a mental and physical break from working two jobs. I was working as a lab assistant in both research and clinical areas of a large hospital. Four and a half months later, I was out of both jobs. I had decided at the end of January to work just one job and that proved to be an error on my part. I think that if I was working with research my life would have been simpler as I wouldn’t be walking so much anymore. I am now on disability and I have to say that it sucks. I went from a working member of society to nothing in just four months. I just couldn’t do the work anymore. Walking around the huge lab was killing me. I had put in job restrictions and it was rejected. After working fourteen years in the same place, I was sure to get “special” treatment. But that was not the case. I had to move to do something more sedentary. That caused me to have a mental breakdown. I was in the hospital in April of this year and then again the end of June. June was a long stay. I was there for two weeks because mentally I just could not handle doing nothing anymore. I became psychotic with the stress of not having a financial income and not being able to pay my bills. Stress always brings out the hallucinations and most of the time I can handle it but this time the voices wanted me to cut my leg so I had to go back on my meds and stay longer to have it work.

It is very depressing to be disabled. It cuts you deep inside and makes you feel so bad. Although I am collecting I’m still trying to find myself. I have days where I do absolutely nothing, least that is what I call it. I might go out to Starbucks for a coffee and write or read. I might just stay home and sleep. I might write a blog or try and read. Most of the time I play on my computer, playing online games.

When I have the energy and creativeness to write, I write about my mental state and being suicidal, what it’s like being in chronic pain, and how I am living this way. I have a lot of time on my hands and don’t spend most of it in front of the TV. There are not that many shows that I watch on a regular basis. I record my favorite shows (CSI NY, CSI, SVU, Hart of Dixie) and watch them at my leisure, which is sometimes a few days after they air. I am just too restless to sit for forty-five minutes in front of the tube.

It hurts not being able to do something during the day. I wish I loved cooking but I can’t stand too long to do something like that. I like making cookies but I don’t like the clean up. As November is slowly approaching, I am thinking of making my first pumpkin pie. That will be my goal for the holidays. I just hope that I can stand long enough to mix the batter.

A Letter to Normals from a Person With Chronic Pain

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, medical

 Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.

 Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about school, my family, my friends, and most of the time; I’d still like to hear you talk about yours, too.

 Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, it applies to everything. That’s what chronic pain does to you.

 Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

 Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to “get my mind off of it”, may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctors and I am doing what I am supposed to do.  Another statement that hurts is, “You just need to push yourself more, try harder”. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can’t be put off or forgotten just because I’m somewhere, or I’m right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.  If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.  In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the “normalcy” of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

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.