Tag: chronic illness

Baseball Season is officially over

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

Tonight the San Francisco Giants swept the Detroit Tigers in the World Series. My Baseball Depressive Disorder has peaked. Now I have no baseball games until Spring training in March, a mere five month wait for something I love more than anything.

I went out with a friend of mine who I haven’t seen since May. He finally sold his house in Boston and is now temporarily living in Marlborough until things are settled for his condo in Revere. I hope that he likes Revere and he is by the Blue Line as he works in Boston. Traveling can be hard between these two cities by car. He wants me to help him with his Facebook page and I have agreed. It is freelance work, though I have told him I know nothing about eye conditions but he is willing to teach me. He is an eye doctor, and in my opinion one of the best in the Boston area. I have been seeing him since I graduated high school. This volunteer work will help me keep busy. I love learning new things and I am sure it will help him and his work.

I still am feeling kind of weird since I am living and I have not attempted suicide. I feel like it is a loss that I am never going to recover from. I know this must sound weird but it’s true. I have been trying to attempt to kill myself since 2005 and have not made one single attempt despite all my planning. I have come close a couple of times but I have never really gone past my planning stage. What changed? The fact that more people need to be aware that there are people like me who think about suicide all the time yet do not tell a single soul about how dark their thoughts are. I have my therapist to talk to about this and she is the ONLY person that knows how I really feel. I don’t confide in anyone else. I would talk to my psychiatrist but I have been avoiding her. Mostly because I just feel like a burden to her. That is the hardest part of this illness is knowing you are a burden to others even though you may not really be in reality.

I still have yet to go back to my comparison paper. I really am just procrastinating on it. I want to be able to work on it while I am sitting at a Starbucks. And because my depression is so bad I hardly leave the house, I just have not been in the mood to bring my laptop around the city to go to Starbucks and sit for a few hours. I have been becoming more reclusive and I hate leaving the house for any reason. I just like staying in my room all the time goofing off on my laptop while Facebooking or blogging. I haven’t had that many emails to respond to. My online CES support group has been quiet lately. Like everything else, it ebbs and flows. Sometimes there is a lot of chatter and other times there is very little. It all depends on what is going on and if people have things to add or suggest. This group has been a life saver for me because without it, I would feel totally alone with my nerve condition.

Up and Down, Up and Down

by Midnight Demon, posted in depression, mental disorders, mental illness, mood disorders, psychache

Depression affects millions of people. It does not discriminate. It is a hidden illness as the signs are not always obvious. Lethargy, fatigue, loss of interest, loss of pleasurable things and activities are common. Personal hygiene is another common dysfunction that is not really discussed outside a clinician’s office. They may not shower every day or even brush their teeth.
I have suffered from depression most of my life and it’s only been over the past few years that my hygiene has suffered. I don’t shower every day. I barely brush my teeth. I don’t use deodorants unless I remember to. I might brush my teeth once every few days, though it’s not because I’m lazy. It’s mostly because I don’t care at times or because my post nasal drip (PND) causes me to gag and be nauseous. Because there have been many mornings where I am gagging and puking, I have gotten in the habit of not brushing my teeth every day or brushing later in the day when my stomach settles. Most days I really just forget because it just isn’t a priority for me. The PND has also gone on for years and I can say that it has caused me to feel bad about myself because I can’t take care of my teeth. Both my parents have dentures and that is the last thing that I want but when you feel so low, you don’t want to do anything. Even less so when you feel sick to your stomach. So I try to brush before bed and get in that habit but it is not easy. I have become easily distracted so if I go to the bathroom and do my business, I might not remember to brush. Sometimes I will if my mouth feels yucky. I think a lot of people with this condition don’t take care of themselves but are too embarrassed to admit they don’t take care of their oral hygiene. It is the same with personal hygiene.
I just don’t think about this anymore mostly because I know I will end up losing my teeth if I don’t. I have even stopped going to the dentist for fear of being reprimanded. I feel bad about my hygiene habits. Bust most days you only have enough spoons to do one or two things for the day. If showering and brushing your teeth are those two things, that doesn’t leave much for the rest of the day. I’m lucky that some days I go out and get my coffee at Starbucks. Usually that means no shower. Which leaves you with one spoon. Spoon theory (https://midnightdemons7.wordpress.com/2012/08/08/spoon-theory-explained/) is the equivalent of the amount of energy people have that do not have a chronic medical or mental condition that affect daily activities. Most people can take a shower, brush their teeth, get dressed, and then go out into the world to do what they have to do. This is not so with someone with a chronic health condition, being physical or mental. For those of us with chronic illness, it is not that easy. What used to take me 20 minutes now takes 40 or more, depending on how much pain or energy I have.
For me, it takes about 30 minutes to get dressed only because it is difficult for me to decide what to wear. What color jeans, socks, shirt or what kind of jeans I want to wear. Indecision is the biggest problem with me. I have too many and I can’t just chose one. I guess it could be worse. I could just be trying on clothes and take them off like some people do.

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.