loss of self

Today I broached the subject of grief with my therapist. She hasn’t received her packet of letters that describes my grief and how I think I should address it. I couldn’t bring myself to tell her that I think the reason for my craziness the last few months has to do with my grief and not dealing with it. Course, I didn’t think much of it until I asked if grief can cause psychosis. Then I just shut down. And thank god, it was the end of session. She wanted to see me tomorrow but I told her Tuesday was fine. It will give me more time to think about how to approach this.

She encouraged me to write about this stuff and how I am thinking about it but I don’t know how. Just thinking about my losses just makes me extremely sad. It’s like knocking the wind out of me. I mean, I used to be able to work two friggen jobs and now I can’t even work one. I was stable enough to work in one job for fourteen years and then I messed it up because my foot got messed up. I don’t know if I could work again at the same job. I would like to. But I can’t be all running around like I used to. Thing is, being a lab assistant, you sometimes have to do phlebotomy (draw blood) and I was never keen on drawing blood. Even the easiest of veins I blew and I don’t want to go back to it ever again. I was lucky my department didn’t have to do that. There was a separate department for blood draws.

It still hurts that after fourteen years of service I was just not accommodated by my job to do my job. It really hurts. I never told anyone how bad it is losing my job. Even though it has been almost a year and a half now. It also sucks I can’t do my other job of driving around Boston picking up samples because my driving record got messed up. I got a speeding ticket one morning because I was too sleepy to notice I was over the speed limit. But a State trooper noticed and I got fined. Then because I couldn’t pay the fine, my license got suspended. It took me almost a year to get it all cleared up. But it is going to take a while for me to have a “good” driving record again. And that kills me. I know it doesn’t matter now because by the time I have a car of my own again, I will be “good” again. But the fact that I can’t get a Zipcar to have some independence just kills me. I can borrow my sister’s car to go places but mostly her husband takes it and I hate driving the truck. I know I should conquer my fears and learn to get used to it but I have a peripheral defect and I am just afraid I am going to sideswipe someone or something. And I HATE backing up in the drive way because my sense is not great. Even with the car I hate it, especially when there is a car parked across my driveway.

I really have other deep losses such as the loss of myself and the loss of my abilities. Walking used to be my joy. I was able to walk long distances and think nothing of it. It never bothered me. Sometimes it did when I used to get Charlie horses if I walked too far and didn’t drink enough. But other than that, I really enjoyed walking to the train station which is about a mile away. I used to do the Walk for Hunger, which is a 20 mile walk around Boston. Haven’t done that in years but I am determined to do it one year, long as I go slow. I will have to do mega training to work up to it as right now my limit is four blocks .

Then I have the loss of my bodily functions. I never thought that at the age of 36/37 I would have to wear diapers to events that last longer than a few hours. This is because I no longer get the signals to my brain that my bladder is full. Once I am full, I start leaking excess until I do go. It isn’t until I feel wet do I ask myself the last time I went potty. The number 2’s are a different story. I can’t feel myself went I go unless my stools are hard. If you are the squeamish type, I would stop reading right now. This could be disgusting to you. If my stools are soft I don’t feel them as they move out. If I have the runs, I can quickly have an accident as I can’t hold them long, though I have been lucky the last few times in holding them in by not letting loose my farts. If I lose control of my farts, I lose control of my stool and well, you got it. A nice number 2 in the pants. It has only happened to me a few times, the worse was when I took too much fiber pills and thought I was farting but really I was shitting myself. That was a lesson learned. I usually take senna because I find that it is the only thing that makes me go without too much trouble. Too much however can cause very bad cramps and possible accidents. Every time I have an accident or have skid marks because I didn’t wipe myself well enough, I lose it. I really go into a darker place and usually want to kill myself. Same with when I have a urine accident but I am getting used to them. Having stool in my pants is a real downer. And I don’t think anyone can get used to that. It makes you feel so small. And people take it for granted that their bodies will tell them these things. My body, because of the nerve damage, no longer does. And it is a HUGE loss. Again, not something I have dealt with nor wanted to.

Then, of course, there is the loss of where I should be now had my mental illness not shut me down and forced me to stop school once again. I call this the “if onlys”, such as if only I didn’t have a psychotic breakdown in 2008, how different my life would have been. If only I went to a four year school instead of getting just my Associate’s degree I would be better off now than I was back then. If only I had decided to work part time and go to school full time would I have been better mentally than I am now. Or would the financial strain of not working been too much? Or would the strain of going to college full time really be my downfall? Either way, I can’t change any of it, but it is a HUGE loss to me not being able to go back because I fucked up. I should have just made a simple phone call to put my loans into deferment and I would have been able to go back now that I am just sitting on my ass doing nothing most days. I think me not going to back to college is the most hurtful to me because I loved my studies, didn’t matter what they were. I just loved being in academia. Psychology is really my thing. And I know I could have been a good therapist. But I don’t think those dreams are ever going to come true. Maybe if I win the lottery.

Then you take into account all the times I have been suicidal. It is a loss because I am still having to piece back my life and I don’t like it. I rather be pushing up daisies for eternity. But as past blogs have talked about, I can’t kill myself anymore than I can make a gourmet dinner. AND it hurts to go on living like this.

You know you’re having a bad day when

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?

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…