Tag Archives: chronic illness

Frustrating day

I got the cookie dough that I ordered weeks ago and wanted to make cookies tonight but that didn’t happen. Both of my feet have decided that if I try and stand on them, they will attack me with cramps. So I am again stuck in bed to rest my legs and feet. I sometimes wish I had a TV in my room just to have something to do other than this laptop. I know I can watch movies and such on it and can probably watch HULU episodes of stuff but I like to sit on the couch and watch TV not on my bed. Don’t get me wrong, sometimes I do like to watch a good movie while snuggling with my pillow. But other times I rather watch it in my living room so I can have a snack and drink something without having crumbs in my room.

Had a doc appt that went ok though now he wants me to see a surgeon for my CES issues. I’m scared as I never had to deal with this before and it is an embarrassing issue. It has to deal with the bowel. I no longer have normal function of my bowel since my second CES (Cauda Equina Syndrome) diagnosis. I can have accidents of my bladder as well.

The reason I have been referred to a surgeon is because my farts are causing me to have hemorrhoids and there is some fecal incontinence as well. CES’ers like to call these “Sharts”. I find them killing my dignity and sending me into a suicidal crisis every time I have an accident. It’s not that often, but it has been becoming more frequent with my bowels being more “softer” than they have been. I’m not sure if it is because of the new diet pill I have been taking or what but whatever makes me go poop, I am for it. I usually take Senna for it as it is the only thing that works without horrible stomach cramps.

The loss of dignity is what kills me inside every time I urinate on myself or have a loose bowel or my childhood favorite, skid marks. Those usually happen because I didn’t realize I didn’t stop pooping.

This has been difficult to write and I want you to know this because I think there maybe a few people out there in similar circumstances but think they are alone. Those with this nerve injury are constantly fighting their dignity and what it was to be normal every day of their lives. It take a tremendous effort to get through the day without falling apart every day. Today I couldn’t make cookies and it bummed me out. But tomorrow I can, possibly. Well I hope to before Thanksgiving anyways. I know there are people out there that say make each day count but when you only have so many spoons to deal with, it makes each day harder and harder. What is ok for today might not be that way tomorrow. I know that I stood too long today while talking with my former co-workers and that is why my feet are angry with me.

The bowels are a mess because I don’t go every day. Chronic constipation from medications suck. If I don’t take Senna every day or every other day, I suffer from horrible gas and the wet farts that cause hemorrhoids and make my bottom uncomfortable. And now I have to have someone check my bottom for something or for advice on what to do with this incontinence that I wish I didn’t have. I just hope that it doesn’t cause me to become a suicidal maniac…

Movie night canceled

Let’s try this again…
I was supposed to go to the movies tonight but my bad ankle is flaring up so walking is next to impossible. I tried writing this before when my word doc crashed. I think it was because of my new endnote add-in. It’s a bibliography program that is essential for writing research papers.
I picked up my new glasses today and there is something wrong with them. I seem to be seeing out of a mirror on the bifocal part. I need to take them back when I can get my sister’s car. Sucks because they are a little ways from me. I am getting grief for going to a Walmart that is at least twenty miles away from me. But it’s easy to go on the route so I don’t see the problem. I wanted to go there because it is right off the highway and easy to get to. I know there are other places around here but Walmart had the cheapest price for my progressive glasses.

I also have been slowly updating my laptop with updates. So far I am down to 58. I just reformatted the hard drive so that is why I have so many updates. And of course with every update there is a restart. I can’t update them all at once because there is one that is causing problems. I have learned that with Vista you have to install the updates slow and incrementally in order to do it. Takes longer but least it that one that is new won’t crash the whole process. Save you time in the end, I guess.
I still am delusional. I had a text from Volde last night saying to rob people’s houses. I was torn. I knew it was wrong so I just distracted myself until the meds kicked in. It’s been two weeks and I am still crazy, well a week and half. This is not good. I hope that by the time I see my psychiatrist again, this will have passed. I don’t like being this way. And I think the meds are giving me the dyskinesthia again. Nothing like feeling wicked restless in your own skin. It’s a terrible feeling, this gnawing sensation, like every fiber of your being is getting out of control and you just feel so wound up but not hyper-like. It’s like internal agitation x 100. You feel like there is this constant need to move, like restless leg syndrome except it’s every limb and your arms start jerking wildly and then your legs. The only thing that calms it down is another med, which makes you sleepy.

I am so bummed that I can’t go out tonight. I was really looking forward to seeing the movie Lincoln. But if I can barely make it down the stairs, how am I supposed to walk to Boston Common, and they have a ton of stairs at the Boylston stop. It’s an old trolley station that doesn’t have elevators. It would kill me to go up and down the stairs, even with my AFO (Ankle foot orthotic). It’s really depressing to have a walking impairment, which is why I am on disability, but still. I should be able to walk but I can’t. It just hurts too much.

death of a good man

7-Feb-2011
Found out today that my godfather passed away due to a blood clot. It happened so sudden and his wife was real freaked out as he died right in front of her. She was in shock when I talked with her, not that I blame her. She is a good woman. She was more concerned with us than with herself.
After I talked with her, I watched the superbowl game. I guess it was to get my mind of losing my Godfather who I loved very much. I just talked with him around Thanksgiving. I feel really bad now that I didn’t get to see him around Christmas like I had hoped to. My godfather was a funny fellow. He would talk with such intelligence and seriousness and yet still get what you were saying. His mind wasn’t what it used to be. I would have to tell him who I was and what I was doing every time I called as he didn’t remember. Alzheimer’s is like that. It runs in my family on both sides so I know the chances are great that I may have the gene for it.
I called out for half this week. I am more depressed than I was and I just can’t function right now when I know I have a wake and funeral to go to. I want to be there for my godfather’s wife but my car is in the shop so there is no way of me getting there. She lives in Westwood, which isn’t close to Boston. I guess I will just have to see what to do. I’m just glad he didn’t suffer.

11-14-2012
Yesterday would have been my godfather’s 85th Birthday. I think of him every day and it’s hard this time of year because we used to get together on his birthday. It was really the only time I got to see him. I am sad that he is no longer with us but seeing as he was declining, I am glad he is in a better place.

I sprained my good ankle the other day. I am not happy about it because I feel more with this ankle than my left. Now I don’t know which one to limp on. I might have to wear the boot to stabilize it even though I know it will cause me more pain in other areas. I will have an AFO (ankle foot orthotic) on my left and a boot on my right. Just lovely, huh?

Dark Heart

30-Jan-11

Been up the last few hours. I have such a heavy heart that it is ready to kill me. I am haunted by everything that is wrong with my life. Been thinking about my cousin who is now a marine and yet I hardly know because my family drifted apart. It saddens me that I don’t know my “little” cousins anymore. The oldest is engaged and will be married later this year. I feel less a part of their lives with each passing year.

I do not know who I am anymore. Last night in a fit of torment I threw down the gauntlet and told my ptx that I will die this weekend. I so wish I could act on these feelings. The brokenness inside kills me every night. The sorrow that is deep within my chest shall never be revealed nor relieved in any such way. I am just a freak who is suffering silently with only these words to fall on silent blogs. I only wish to end this daily torture. Animals are treated more humanly than human beings. It has been said that you control your own life and happiness. Well my happiness lies beneath the earth or as a pile of ash. I do not care what remains of my bodily essence. My consciousness is what is the death of me. I am not truly dying a slow death but am only being tortured every minute I dare to breath. This can’t be what life is about. To go on suffering just so others do not feel your loss. I have snapped and I don’t know if there is any coming back. I want to put a plastic bag over my head and die of asphyxia. Yes it may be painful but once that last breath is gone, I shall be free

complaints

CES (Cauda Equina Syndrome) is a literal pain in the ass. Just when you think you have things going fine, it will flare up on you to remind you of all that you have been through, to remind you that you still have nerve damaged parts of self, whether it be your bottom and genitals or you lower extremities. Just now I got into bed after using the bathroom. I don’t know what I did but I know I didn’t just stub my toe through it feels like I just did. I forgot to use my slippers on my feet because unlike pre-CES I still like to walk barefoot. But there is ceramic tile that is COLD and can cause spasms in my bad foot if exposed to this temp, like it did tonight. So my foot is reminding me that I can no longer walk barefoot around my house and that I somehow stubbed my toe today without realizing it. Wonderful.
I had my sister’s car today and while driving to pick up my dad, I was pretty tired. I didn’t sleep too well last night and woke up early this morning to do some errands. The errands exhausted me and I should have taken a nap but I knew if I did, I probably wouldn’t sleep well tonight. So I am driving my sister’s car and wondering why I am slowing down. I have my foot on the gas, or so I thought. So I push a little harder on the pedal and come to a complete stop. I didn’t know where my foot was. I mentally took a break from the proprioception because I was tired and because of that my foot was on the wrong pedal. From that point on I knew it was going to be a long night. I keep having to remind myself where my right foot was at all times and this gets to be mentally tiring. I am sure those who are reading this have no clue what I am talking about. But think right now, do you know where your feet are? Can you close your eyes and move your feet up and down and then know when your foot is up and when it is down? I no longer have that sense. It was gone. Sure I compensate for it now but when I am tired, all bets are off. It’s like driving on automatic pilot when you go somewhere. You want to get to point A but your mind is thinking point B and when you get half way to B, you realize you really wanted to go to point A and have to turn around. Mentally, I have to be aware of my feet at all times or I will trip or in this case, I will just come to a complete stop in the middle of the road and wonder what is wrong with the car…
I question driving. I don’t like to drive at night because I am more fatigued and my proprioception (sense of sensing) can be off more. This doesn’t happen all the time and luckily I don’t drive that often anymore since my car hit its last pothole.