Today I got my bi-monthly journal of the American Association of Suicidology, Suicide and Life Threatening Behavior. My cousin came over and my mother said to him that I like reading that kind of material. I do but on another level, I feel embarrassed. I know I am taking it personally because it is personal. I attempted suicide many times over the years and each time I fail it is not only a failure, but it also is an embarrassment to my ego. I have the scars to show of the self injurious behavior I have had over the years. Again, an embarrassment of my illness. I don’t know why I feel this way. Or maybe shame is another reason I feel embarrassed. I don’t know. But it hurts. It hurts knowing that I failed and I am still here. I don’t know why it does but it hurts like hell. I have not told anyone about the shame that I feel other than my blog and maybe my therapist. There is so much I tell her that I sometimes forget if I tell her about the shame of living. I know people who have attempted don’t like to talk openly to the person in front of them about their story of attempt. I don’t think I can speak openly in front of a crowd of people and tell them I have attempted and failed and now I feel like a complete and utter failure. That I want to try again and succeed just to try to cheat death. But I have people that rely on me to be here and though I sometimes resent them for it and even hate them for it, I still continue living. I don’t enjoy living. It’s a constant struggle for me for one thing to another. It’s more of a hassle living than anything. Between the chronic pain that I feel physically to the chronic pain I feel emotionally, why bother? But I do because I don’t think I can ever again act on my feelings. I lost what is called lethality. And until I get it back, I am still going to be living this so called hell called life.
Tag: complex regional pain syndrome
The Price of Walking
Twelve years ago I lost motor function in my feet and legs. It was caused by a disc fragment that was pressing on my nerves. I had to have surgery to remove it. It was the size of an almond. The road to recovery was not an easy one. I had to relearn to walk again with a walker. It took a few months before I felt confident enough to walk with a cane. Took me several more months of walking with the cane before I grew dependent on it and decided to walk without it. My balance was still somewhat off but I was walking.
Today I am walking with a price. I never learned to walk properly and my left foot never regained full strength like my right. So instead of walking heel to toe, my left foot decides to do a swerve maneuver and cheat to get to where it needs to be going. I can’t watch my feet where they land but this is what my physical therapist sees when I get evaluated. Most of it has to do with fatigue. Once I get fatigued, the swerving starts and pulls at muscles and tendons that should not be involved in walking. That is where I am at today. I have pain in my leg and foot and ankle all because of this disc. But it’s a small price to pay. Least I was able to regain something of what I lost. But it cost me my job. I am unable to work because I cannot walk long distances without fatigue and pain. Even though I have done my job for years the wear was just too much. Even today if I walk too long or stand too long I pay the price of pain. I wear an AFO, least I am supposed to. I haven’t worn it in a few weeks because I don’t go out much anymore. I might go out 3 days a week if that. I go out to get my coffee and maybe write a little outside of the house, to break up the routine of nothingness. I was once an active guy. Now I have nothing to do for hours on end. I was once working two jobs. Now I have no job. My income consists of my SSD and long term disability I get from work. I don’t think I can go back to work at the job I was doing. It was too stressful and chaotic at times. Long hours on your feet walking around a huge lab. Just getting there I was hurting.
Now my doc wants me to go back to physical therapy. I have thought about it but I keep wondering if it will really help. I do the exercises, I stretch, but I see no benefit. All it does is cause more pain than what I was in. My neurologist wants me to start this new pain physical therapy program that is supposed to help those with injuries like mine. But I am too scared that I am not going to be able to afford it with the copays every other day or every week. I can barely keep up with my own psychotherapy copays. That what truly is stopping me. Just knowing I have to pay $15 per visit for something that might or might now work for me. I wish I could just join a gym and walk on a treadmill but those days are over. I can barely walk down a block or a few blocks without pain. I rather just take my pain meds and do as little as possible. Hence why I don’t leave the house as much anymore, even if it is for a cup of Starbucks coffee. It used to be the one joy in my life, now it’s nothing but a hassle. Another price I have to pay for learning to walk again.
Thing is even if I go to this special program, they aren’t going to see the pain that I am in right now. It’s almost one o’clock in the morning. That is when the pain really gets going. So how am I going to portray myself as having pain when before 9 pm I am not in pain and feeling ok? It sucks because I would love for them to see how swollen my foot gets at this time. How much my foot throbs in pain, how much the zaps make my foot jerk, or the vise like pain that has me crying out in agony every night. The pain gets so bad that all I can think about is death and suicide. That is the price I pay for learning to walk again. And the price is too high.
Because no matter how much I pay my copays, no matter how many visits I make to the physical therapists, they are not going to be with me as I am crying in agony wondering why I am living this life. So Monday I will call and make an appointment with this special physical therapy group and see what things they will show me that I already know in the twelve years of living with this bullshit. Because in all these years, I have yet to regain strength in my foot, despite all the exercises they have given me. I truly have lost the motors of my foot because I got hit with this a second time at another level that left me with foot drop again. I think that if I didn’t get this a second time I probably would have been ok and not be in the predicament I am in now.
International calls and PTSD
Had an interesting day today. I wanted to talk to my friend in England so I made the phone call, except I could only talk for 5 mins!! I was like WTF because I pay extra to be able to call internationally on my phone. SO I call sprint and everything seems to be in order on their end. The guy then transfers me to the international section of Sprint. Turns out that because my phone is a Google phone and Google voice is on, that was the problem, I think. I won’t be able to call my friend until tomorrow night to see if this works. This sucks but I have a therapy appt in a half hour so don’t want to be on the phone too long.
I rewarded myself with getting my Claddaugh ring fixed and sized the right size. I picked it up yesterday. Luckily it was just under $300 USD. The most I have ever spent on myself outside of electronics such as laptops. The reason it cost so much was because I had the shank fixed as well. I LOVE it! It fits so nice and I miss wearing a ring.
I have been stressed the past few days because of financial reasons. I have to call to work out a plan with my student loans before they garnish my SSD check. I am so worried they are going to leave me with nothing. I so wanted to save up for a car this year but doesn’t look like that is going to be likely. I need to be able to pay the cable bill, my mother for the mortgage, and my cell phone bill. I also NEED to have money for my “crack” Starbucks coffee but I can do without as I can go several days without needing it. But when I want it, I want it dammit. It is the only JOY I have in my life is that one cup of coffee a day.
I still have my fucking menses that are just driving me beserk. I was supposed to call the repro-endo doc today but never got the chance as I was lazy when I woke up this morning. It is still cold out, not as cold as it was yesterday but still cold and I wasn’t sure I wanted to go out. I had some mail to mail so I said the hell with it and went out. Sometime I just need to push myself. But while I was walking it felt like I was walking in mud. I hate that feeling more than anything. Some days I feel like I am light as air and other days I am walking with cement shoes on my feet. I don’t get it. I also had another damn problem with my fucking pain medication. Doc wrote for extra so in case I need them, I have them. Well the way he wrote it is only for a month supply only and the pharmacy won’t give me this extra! ARGH!!!! I am so fucking pissed off because last month he said he was going to change the prescription to 1-2 tabs a day and this month he didn’t. I am so pissed off right now. I just hope I don’t have any pain flair ups that necessitate me needing more than what I have. I am like so terrified of getting flare ups. It really activates my PTSD. I start having flashbacks of what it was like having CES all over again and then the surgery and all that I went through to get to where I am today. Not that I am 100% better, I am not. But at least I am not walking with a walker or cane all the time. It kills me when I see an old person with a walker when I am on the bus. It just reminds me how lucky I am that my doctors knew what I had. Some people that have CES or Cauda Equina Syndrome weren’t so lucky and have to use a cane or walker to get around. Some are worse off and can’t walk at all and need a wheelchair because their legs are so weak.
Whenever I get a pain flare up I tend to go into flashback mode. It is not a pleasant experience. I remember things that have happened in the past as if it were happening today. I get anxious and nervous. I start worrying. It is the worst feeling in the world. And then I want to get rid of the pain. If the pain meds don’t work, I usually want to cut. Cut off the affected limb so I am no longer in pain. Or just stab myself to relief the pain. I know that doesn’t make sense but it is what runs through my head during these times. It is awful. And I can’t usually move during these flare ups. I am incapacitated. I can just barely move enough to down some pills and hope it take away my misery. I hate being bedridden with this type of pain. I always keep my cell phone handy just in case I need to call someone and have them help me. Because my mother is deaf and with my closed bedroom door she is not going to hear me nor does she have the mobility to go up the stairs and help me, but at least she is someone I can call in case of emergency.
Insomnia caused by pain
It’s almost 2 am and I still have not gone to bed nor do I think I will in the next hour. Pain is keeping me up and apparently I am not alone. My CES friends on Facebook and I have been chatting most of the night, not really complaining because we all know why we are up: PAIN. I find it sad that people with this condition lose sleep most of the night and most of the time because of PAIN. It sucks yet no one seems to care. We tell our doctors about our pain but they don’t really do anything about it. They might prescribe us sleep aids that don’t work or give us terrible side effects, such as sleep walking around the house, bumping into things as they go. Then they awake in the morning and have no idea why they have so many bruises on them. I have a friend in England who if she takes too much of sleep aids she hallucinates and has full fledged conversations and actions without her realizing it to other people and such. It scares her every time. And I don’t blame her. It sounds more terrifying than my voices.
This is what CES and CRPS does to you. My left foot was cold as ice and swelled to the point of pain. So I put a sock on it but now the sock is bothering me, to the point of it feeling like it is strangling my ankle but my foot is still cold and I know the pain will get worse if I take it off. So I live with the strangling sensation. I got to take another dose of my medicine to calm down the pain because it’s been more than four hours since I last took it and I am still in pain. I should have been asleep at least three hours ago. But again, when the pain is stronger than the pain meds, you don’t get relief. The pain meds are not going to do anything for my foot feeling ice cold but at least it will hopefully space me out enough for me to go see Morpheus. I forgot what he looks like I haven’t seen him in so long. I think it’s funny that the god of dreams is called Morpheus and then you have morphine that is a high pain reliever drug. Maybe they are related. I don’t know. I have only been on morphine once after surgery and then had to be taken off because of bad side effects (it caused big time urine retention). And that was over a decade ago so I don’t remember how it made me feel. I know it took care of the pain like it was supposed to.
But I digress…I have my sleep machine on and I think I will get off of the laptop and try and go to sleep before it becomes six in the morning…
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