Category: physical pain

You know you’re having a bad day when

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

You know you’re having a bad day when…

You know you’re having a bad day when you wake up and a half hour later you are in severe pain. I just can’t believe my foot acted up. But then, this has been happening for the last few weeks. I can’t stand it anymore. I lose sleep because I am in pain and then when I do wake up, I am in pain again? It’s not fair! Usually my day time hours I am in manageable pain. It has gotten to the point where I don’t even notice it anymore. Now all that has changed. I don’t know if something else is going on with my foot, if I did something to cause it to be this way or if it is just nerve damage. I don’t really care of the cause, I just want pain relief. Luckily taking pain meds in the morning are working but it leaves me exhausted the rest of the day, even with a cup of coffee. Though my Starbucks funds are running low, I won’t be going there soon until my next pay period. I guess I over indulged when I bought myself some treats. Can’t help it. I love their coffee cakes.

Yesterday I was reading my support group email and a friend was telling the group how you need to mourn the loss of your old self as you are never getting back to it. Then a fellow blogger wrote the same sentiments about her illness and how disabled she felt but didn’t realize how much of herself had gone by the way side since becoming ill. She was crying as a way to mourn that loss. It got me thinking…maybe I am so suicidal because my grief is just too great. I got CES, Cauda Equina Syndrome, at the age of 25. It is a syndrome of nerve damage caused by compression of the cauda equina nerves, the horses tail, that is at the end of the spinal cord. These nerve control the function of everything below the waist, from leg movement, to going pee and having a bowel movement, to sexual function. It also controls sensation and proprioception, the awareness of where your legs and feet are. Once this is gone, your balance is affected. You might lose control of one or both your legs. You might not walk correctly anymore.

I have been through a lot the past year and a half. I have been diagnosed with a nerve condition called complex regional pain syndrome (CRPS), which is the chief source of my foot/ankle/leg pain. It is caused by already damaged nerves and aren’t I the lucky one to get both conditions. Since I have been diagnosed, I have been really depressed. I know there is no treatment other than opioid therapy. Though I have been in therapy with the same therapist for the last twelve and a half years, I still have not thought how much these conditions have affected my life until now. I no longer can work. At one time I was working three jobs. Now I can barely do one. Before going on disability, I was working two jobs. I wasn’t happy. Both jobs were stressful and caused me sometimes sleepless nights. But then I sprained my ankle and everything started to go down hill after that. I couldn’t figure out why the ankle, which should have healed in the allotted time, was still causing me pain. Why my leg still had swelling, why my foot and ankle were swollen. It didn’t make any sense. I saw one doctor after another. Podiatrist, orthopedists, physiatrists, neurologists. None could give me a clue until the symptoms became worse and a picture of CRPS started to emerge. By that time, I was having difficulty working both jobs. I ended up going to the emergency room in severe pain, pain that was causing me to think of suicide as a solution to end it because nobody could help me. I went to physical therapy and they were the ones to notice I wasn’t walking correctly. My foot does this swing thing that pulls at muscles it’s not supposed to while I walk, but only does so when I become fatigued. Which, one physical therapist showed, happens very quickly. And that is because I never regained my strength in my foot after getting CES. I never thought that at the age of 36 I would be disabled. And it hurts. Not having the social support of my coworkers anymore hurts. Not having contact with people outside of my family hurts. My friends that I thought would always be there are there no longer. They all went on with their busy lives and stopped texting and calling to see how I was doing. I don’t blame them. But I do miss them.

I guess when I have had uncontrollable sobbing episodes it was because of my grief that I have been avoiding all this time. I don’t know how to deal with it. I never thought that I would be in mourning. I never thought that I would lose my job because I couldn’t walk anymore. I still am able to walk just not for long distances. I can’t stand for more than twenty minutes without pain. I used to be able to do so much and now I can’t do anything. And because I am not financially stable. I can’t even go back to school while I ponder what my next move is. College is too expensive for me to afford. Even at the state school. I know I should put some time into getting a grant or something but I wonder if I am too “old” to get it. I have had to put my college education on hold because of my mental illness back in 2008 and I have not returned to school since then. But then I am not sure I can walk around campus and do the stairs like I used to. There is a lot of loss in my life on a very personal level. How do you mourn the loss of your functions? How do you get used to not doing something as “simple” as walking. I have had to relearn to walk again twice in my life. How many people can say that?

It makes me angry at times. I guess that is why I have been having fits of anger for no reason. I will just be in my room playing on my laptop or writing when all of a sudden these waves of anger will wash over me. I guess it is all part of the grieving process. And isn’t one of them denial?

depression and mobility

by Midnight Demon, posted in depression, mood disorders, physical pain, psychache, suicide

This morning started out ok until my grumpy sister started yelling at everything. I ducked out of there before things started flying. Hehehe

I know I should be writing in my “book” but I think I will take a break today. I spent almost four hours on it yesterday and it is now up to eighteen pages. I figure I will add to it a little bit every day but it stirs up emotions and I think that is why I am frustrated right now. It is difficult writing about your struggles with suicide without feeling it when you are still struggling with it. Last night I was in bad shape. I started thinking that I would be better off dead and just wanted to die. I just don’t think I have a purpose and feel like I am just a burden on my family because I am no longer working. I am collecting a social security check and it bothers me that this how my life is right now. I can barely deal with any stress anymore without getting psychotic. I can barely walk around the block without pain. The depression is so crippling me that some days I don’t leave the house. It’s very isolating. I try to go out and even just riding the buses takes so much energy.

Today I just realized I have not left the house since Thursday. I might go out today and go to the store just to take a walk. Maybe I will just buy something that will make me feel better. A little retail therapy never hurt anyone before. Or maybe I will take the bus to Clarendon Hill and head towards Arlington. I have not ridden the buses in a long time. As long as I have my music, I should be ok.

As I’m writing this, I am listening to Linkin Park. I love this group. It always is the right music to listen to when I am in an irritable, frustrated mood. That is the type of mood I am in right now. I am also worried about my foot. I had put a sock on my foot last night because it got wicked cold and this morning the sock was still on, which is unusual as I don’t usually keep the socks on while sleeping. My foot is still some what cold as I can feel it through the sock but the sock is also irritating me. I know that if I take it off I risk angering my foot and it retaliating by causing me pain. Nerve damage sucks. I really hate this type of pain than any other because there is nothing I can do about it. The other night I had zingers, electric type of shock pains in my big toe. It was so annoying. I couldn’t sleep because as soon as I started to relax, the zingers would start, jolting my foot and waking me up. Why do I have this nerve damage? Because of something called Cauda Equina Syndrome (CES). A disc crushed my nerves in my back and left me with nerve damage in my left leg, foot, ankle, and bowels/bladder. But the damage is better than it once was. It take a long time to recover. I have had my last surgery almost seven years ago. This was the second time that I got CES. The first time was the real damage with the drop foot that I still have and also foot weakness. Because of this weakness, I get fatigued in my foot very easily and this causes me to walk improperly. Walking improperly results in the pain that I have been experiencing. And it is different every time it flairs up. I can have a barbed wire type of feeling, a pounding in my foot like someone is using a hammer to crush my toes, to feeling like my toes are in a vise.

This pain also contributes to the depression and not wanting to walk because it brings me pain. But I try to do what I can to get out of the house without too much difficulty. I try not to stand too long while waiting for the bus. I also always try and get a seat whenever possible rather than standing because the pressure and worry of the bus stopping short is always there. When I take the train, I do the same thing.

I didn’t go out again today. I decided to cook and watch the baseball game. I made a spicy tomato sauce, which I didn’t intend to make. While I was pouring a little bit of crushed red pepper, the top came off and I dumped half the container in the pot. I now have a spicy sauce. If I had some beans I could make a chili out of it.

And the closing pitcher for the Sox decides to blow the no hitter. FUCK! I so wanted this no hitter, even though it is still Spring training. Today was media day and the last media speaker SUCKS. Remdawg and Don are not even reporting the game, just letting this soft-spoken speaker speak while the game is playing. I am falling asleep.

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.