Tag: chronic illness

notebook from the past

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, chronic physical pain, depression, mood disorders, physical pain, psychache, suicide, suicide attempt

I am wretched and know not why. I am healthy yet I am ill. There is no diagnostic test to tell where the pain is from yet I want to die from it. I fear that it will kill me. A hundred years ago I’d be locked away in an asylum. This day and age I’m forced to be a functional person with no symptoms of a psychic malady.

Pain that is so bad that nothing can relieve it. Almost as if a pericardial centesis is the only way to drain the pain out but as there is no effusion it will be dry.

This is something that I wrote twelve years ago. I can remember what that pain felt like and wanting to die. It was terrible thing to live through. I talk about the effusion because my heart was aching so much it killed me and I couldn’t breathe.
Quote from Noonday Demon: “if everyone has the capacity for some measure of depression under some circumstances everyone also has the capacity to fight depression to some degree under some circumstances. Often the fight takes the form of seeking out the treatments that will be most effective in battle. It involves making the most of the life you have between your most severe episodes. Some horrendously symptom ridden people are able to achieve real success in life; and some people are utterly destroyed by the mildest forms of the illness”—Andrew Solomon
Merchant of Venice: It wearies me, you say it wearies you but how I caught it. Found it, or came by it, what stuff tis made of, whereof it is born, I am to learn. And such a want-wit sadness makes of me that I have much ado to know myself—Shakespeare

I found these quotes in a journal from 2001. It’s an old notebook of my excerpts from books and other things. I had carried it around with me all this time. Today I was going to write excerpts from Night Falls Fast by Kay Redfield Jamison but I was too tired after I had my lunch. The notebook is worn thin by use. It is probably the only notebook that I still refer to every day. I have my favorite Edgar Allen Poe letter that I copy into every journal that I own. The “I am wretched and know not why” is from there. If you ever read touched with fire, you will understand what it is like living with bipolar disorder and depression and how it relates to creativity. It really is a great book.

Today I am sidelined with pain in my ankle and a migraine that started out this morning. I have been trying to take a nap for the past few hours but I have this restlessness to do something, to write that I can’t quite quell. I chock it up to having coffee today at an early hour. I have been up since about 9 which is my normal time for waking up but I still wanted to sleep more. If you count daylight savings it really was 8 that I woke up at. I have this energy but I don’t know what to do so I went out and now my ankle is thanking me kindly in return by hurting me. I had groceries delivered today, some stuff I forgot from my previous order. I got my steaks that I have been dreaming about for weeks but never bought. I usually don’t crave meat but I haven’t had any other than chicken and fish in quite some time, possibly as far back as the summer!

So to say that I am a little tired is on the money. I also had therapy today that made me think about what I am doing or going to do with my writing for the next few days. I also talked about my writing with my co-conspirator. We have decided to write five days a week so we can have two days off. I am not sure I can do that with my blog as I like writing on it every day but I can take off a day here and there. My next writing assignment that I am contemplating has to do with CES, Cauda Equina Syndrome. I have been meaning to write about it for some time but have backed off due to the embarrassing nature of the content. I still haven’t written much beyond the title of the article. Maybe tomorrow I can write more.

just the back

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

I had another easy day today. I didn’t go out despite the temperature being higher than it has the past few days. I did get some work done with my book. But now I feel downhearted. I remember what it was like getting diagnosed with my condition and not knowing if I was going to walk again. I took therapy into my own hands and relearned to walk again on my own with a little bit of help from this therapist and that. It wasn’t until my second diagnosis that I really decided I was going to be the ones making the call to walk again. I have learned to walk three time in my life and hopefully the third time was the last time.

I’m also downhearted because I keep thinking of my ex and what she is up to. But I know it would be too painful for both of us to open a line of communication again. I also been thinking of my other ex as I just wrote about her in my book. I’m not sure if that part is going to stay in it or not but for now it’s there.

I know I should not be so hard on myself for things that happened that weren’t my fault but I do still blame myself for things. I should have stopped seeing the chiropractor when I started to feel better. I should have stopped seeing my ex the minute she didn’t want to be around me because I was loud (second ex). And I should have killed myself in 2005 so I wouldn’t have had to face the last few years of being in horrific pain. Nobody understands what it is like to be in chronic physical pain unless they have gone through it themselves. And no one can tell me that the pain can’t be that bad to want to kill myself because I don’t have cancer. I wish it was cancer because then I know it would be terminal and there would be an end to the pain.

It’s like with the back pain. Everyone asks me how’s the back since I have had surgery. They don’t ask about my leg, foot, ankle, bowels, bladder. Just the back. As if that one thing determines everything else in your life. I know the reason for my foot, ankle, bowels, and bladder problems have to do with my back but the fact is that they don’t think the two are connected. And that hurts. It’s like my leg doesn’t matter only my back. I didn’t get operated on my leg. Just the back.

Dreaming about pain

by Midnight Demon, posted in CES, Chronic pain, chronic physical pain, depression, mood disorders, physical pain, writing

Dreaming about being in pain

Today I woke up at 05:30 after having a dream that my foot exploded into pain. I woke up to find that I was indeed in pain. I had somehow rolled onto my back (I am usually a side sleeper) and crossed my feet, which my bad foot didn’t like. I took a couple of pain pills and then tried to go back to sleep but I couldn’t. The pain just wouldn’t ease up until the meds kicked. By then I became fully awake and have been up the past several hours. I am starting to get cranky to the point of yelling at my deaf mother for having the TV too loud. I just took some more pain meds and some Ativan to try and take a nap.

I had therapy again today. This time I just bitched about my horrible day yesterday and we talked a little about yesterday being the anniversary of why I got into therapy to begin with: my father. I don’t like him anymore today than I did 22 years ago. He is the source of my problems and last night even though I was struggling, I really wanted to cut like I did when this whole thing started. I won’t go into detail about it because I am just too tired to stir up memories of that night. Actually today is the day I first started therapy 22 yrs ago. But it was the events on the 5th and 6th that lead up to it and me wanting to kill myself. Funny how chronic pain changes you. 22 years ago I wanted to die because my father was and still is an asshole and today I want to die because I am in chronic pain, physically and mentally. I know that I never will have a dad though I still call him that. To me he is just a sperm donor. The love I once had for him has been long gone and it isn’t coming back.

The weather certainly has got me still in pain. My spine is still aching and my thigh is just in nerve pain hell for some reason. I don’t know why. I haven’t had this type of nerve pain for at least a year or two. I hope that it doesn’t indicate that my scar tissue has grown more on my nerve root. I am always fearful of that but then the docs will just chock it up to me being overweight and the weight is compressing my nerves. I had a conversation with a doc that said that even if I was normal weight or sub-normal weight I still would have the same back problems. Being normal weight or less than what I am now is not going to really change the fact that I have had four surgeries at two different levels and that I have a deteriorating spine.

Despite being up early, I was not so productive today. I had to cancel my eye appointment because there was no way I was walking on icy sidewalks and risk spraining an ankle in this weather. I had breakfast and lunch and my coffee. I just got my tribute blend coffee from Starbucks in the K-cups for the Keurig. I love this coffee. It is such a very full bodied coffee that just tastes so good. I just wish it would keep me from being foggy brained but I think the meds are kicking in…

On another note before I take a nap, I finally found my missing journal. When I changed the sheets the other night I placed it somewhere and forgot where I put it. I knew it was somewhere in my room because why would I take it out. But it got buried in a hamper so I didn’t see it right away. I haven’t written in three days. That is a long stretch for me as I usually write every night before going to bed. It helps to relax me. Which is probably why I have been so worked up the past few days. I started writing this morning and probably will write another entry before bed. I am so glad I found it because I really like writing on paper more than on the computer. Just an FYI, there was an article I read a few days ago that said that people read slower on electronic devices than a hard copy paper. I found that interesting that the brain has to slow down to catch up with electronics than it does with say a book. But then, that is how most of us grew up with, a book and paper. I find that I have to print out PDF’s because 1) I can’t highlight the information I am reading on a computer screen and 2) I like to keep the hard copy just in case the computer malfunctions or key drive gets lost.

Austin and coffee

by Midnight Demon, posted in cauda equina syndrome, CES, depression, mental disorders, mood disorders, physical pain, psychache, suicide, suicide attempt

Today was a difficult day. I had an appointment with my psychiatrist and then I had group therapy. I first stopped for coffee and had about a half hour to kill before leaving so had something to eat with my coffee. As I am sitting there checking twitter and eating, the guy in front of me sniffles. I then sniffle. We both started talking about sniffling. Well, that wasn’t the whole conversation but that is how it started. We talked a little bit about our lives and what we were up to. We became coffee buddies. I do hope I see him tomorrow, though he says that he gets there early and I am not an early riser. I was only there early because I had my appt with my psychiatrist. His name is Austin. He was telling me how people mess up spelling his name and I asked how. He said with a W. I thought, oh geez. As I left to go on my way, I asked him when he was there most days and he said that time (before 1000), which is way early for me. But who knows. Maybe he will be the reason I get up in the morning and get out of the house for my one cup of coffee.

My appt with my psych went well. This week was our twentieth anniversary. I can’t believe it. I met her when I was 17 yrs old. That was a long time ago. I never wanted to leave her and she never wanted to leave me. So the card I got her it says that we have a weird relationship. That is why we are together, or something like that. I didn’t write anything more profound. I just didn’t have the time but thought those words were enough. She was happy and said that I was the most thoughtful person she knew. I gave her 20 cake pops to represent our 20 years together. I didn’t think of anything else to get her that wasn’t too expensive and too much. I know I should have but sometimes giving gifts to a psychiatrist can be tricky.

I then went to group therapy and like last week, I had intense feelings of wanting to kill myself after the group. This time was because the walk was too much. I got within a block of the building when my foot decided it didn’t want to go any further. It was raining and cold. I pushed further to get to group. It was the same trouble getting back to the train station. I was within a block of the station when my foot got too tired so was doing whatever it walk. At one point I just stuck it out like a penguin’s foot and walk like that for a few steps. It didn’t help but it got me closer to the station. I know tomorrow I am going to be hurting. It is the price I pay for walking.

Group therapy went ok. But again I felt really bad afterwards and called my therapist because I was in crisis again. I promised myself I wouldn’t go ahead with my plans because of my psychiatrist. It is our twentieth anniversary and I just couldn’t give her a present and then kill myself that week. That would be awful of me to do to her. So again I put off death. But I didn’t put off my therapist. She wants to meet tomorrow. She is sick with a cold and I am secretly hoping she loses her voice so she can’t talk. But knowing her she will talk anyway or I will have to talk more. Either way I am stuck with this crazy person.

I wasn’t sure I would finish this paper today. I had a couple of bowel accidents thanks to what I hope to be overdoing it on fiber pills. I had the runs and crapped my pants. I just don’t have any control over loose stool because of my nerve condition CES. I lost control after my fourth surgery. It has been six years now and I don’t think I am going to regain those nerves. It really sucks. The worse part was that my mother had to clean it up. Talk about feeling like a baby. All she kept asking me was to take Imodium but that would cause more problems for me as then I would get too backed up. I hate talking about bowels on my blog but today there is no way around it. It is shitty talk but it brings out the worse suicidal rage in me. I had to email my psychiatrist and tell her I took an extra Ativan because I just couldn’t deal. It was either that or OD on Neurontin which would have just turned me into a Zombie tomorrow. But that is how I cope. I don’t really want to cut. I don’t have the urge but I do want to crawl under a rock and die. I am so embarrassed and humiliated. My dignity went out into the toilet. And I don’t think I can get it back.

What started off as a good day went to the crapper. All because I lost control of my sphincter. That is what it is like living with CES, Cauda Equina Syndrome