Category: cauda equina syndrome

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.

Freedom from CES

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

weather and nerve pain

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, mood disorders, suicide

4 feb 2011

 

This week in Boston we got hit with heavy snow. Actually, we have gotten more snow in January than I can remember in my lifetime. So Saturday night after my shift at work, my left leg was really aching and sore. I was the person that was moving samples to be spun, taken over to heme, aliquoting, and running the electronic version of myself, the MPA. I thought it was sore and achy because of all the running around during the 8 hours plus I did a few more hours before my shift as I had to pull some specimens for a study that was to be shipped out on Monday.  However the pain stayed with me the next few days and when the snow started which was Tuesday, I was in really bad pain as I could hardly bear weight on my left leg. Ten years ago this week I was first diagnosed with CES and had similar pain and problem so I was freaking out big time. Wednesday I paged my pdoc because I was in major PTSD mode and my therapist was unavailable due to being snowed in.  She said go to the ER but by the time she returned my call, my leg was feeling a little better and when the snow stopped Wednesday evening, so did my pain.  I was shocked because usually my back goes out. I have never had leg pain due to the weather. It was the weirdest thing.

I told my neurologist about this and we increased my neurontin to help with the nerve pain. I love this drug more than any other drug out there. It’s not a narcotic and doesn’t have any “high” properties but it kind of just zones you out at high doses and leaves you feeling great the next day because you sleep so soundly. Least it does for me. Now I am NOT recommending anyone should take a high dose of this drug for this purpose. But my nerve pain seems to diminish for at least 24-48 hrs at a time, usually with one or two doses in a 24 hr period.  And that in and of itself is blissful.  No burning of the soles of the feet, no feeling like snapping turtle are nipping at your toes. No zapping feeling.

The only down side of this drug is that it makes you hungover. It’s so hard to wake up the next day and get moving. But even though I know this, I still feel something is wrong with me.  My fatigue level has increased in the last few weeks. I can only be up a few hours before I need a nap. I lose motivation for working and then need to come home and rest. I am just so exhausted.  Take yesterday for example. I got up around 11:30 am because I had an appt with my psychiatrist. She had cancelled because the weather was bad but I didn’t know this as she emailed me at 6:30 in the morning.  My car was buried in the snow and there was no way I was shoveling out so I hung out with my niece for a couple of hours watching her and her mother play on the Wii (video game) and had lunch with them. By 2 pm, I could have gone back to sleep I was completely exhausted. But I had to go to work because I thought there was a sample waiting for me.  I struggled past this exhaustion, get to work and find that the pt that was supposed to get drawn got discharged. I came to work for nothing. I was not happy! I might go to the doc next week to find out why I am so damn tired all the time.

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.