Category: cauda equina syndrome

Totally out of spoons

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

Totally out of spoons

I am so spent. I did too much today and now I am paying for it. I just had my meal, a bowl of cereal. Now I can hopefully relax as I am hurting.

I had to do some stuff for my father, surprised? Tomorrow I get to do the same things I did today, minus going to his house. He must have called me like 6 times today. He is in pain and the medication doesn’t seem to be working. I told him he can take two medication but he refused. Let him be in pain then. I am tired of dealing with him today. Tomorrow he will be seen by his doctor and hopefully they can give him stronger pain medication. I don’t care about that right now.

I have to conserve my energy (spoons). I have a long day tomorrow as I have to deal with my father and then I will be going out to dinner with some friends in the evening. At noon, I am supposed to have therapy but I am not sure I will be home for that. I haven’t quite decided what I am going to do after my father’s appointment. I know I probably will go home so I can rest, but it all depends on what time the appointment ends. I hope that we aren’t there all morning. That will just suck.

I was not in a private space to really talk to my therapist today. She kept going on about how many spoons I have lost even before I went to see my father today. I had a productive morning, all with no coffee on board. I was hoping to have a cup when I got to Starbucks. But for whatever reason, the coffee sucked today, even the blonde roast didn’t taste right. I wasted my money today for the first time. I am so disappointed. I hope tomorrow is better, I am going to need the coffee to get me through the day.

My therapist was funny today. She called me a geek and I think complimented me on being very “Bostonian”. LOL I guess I said “wicked” too much today and it just got to her. I was glad for the light conversation, as like I said, I wasn’t in a private space so talking about my suicidality or self harm urges were out. I actually haven’t had any urges to cut since Sunday. We however briefly, talked about it today. I some how developed a pimple on one of my scars and it was triggering me to cut. It was very itchy and course, when I popped it, made it really angry. I really thought about cutting for the first time in months. I kept thinking about how to make the scar “better”. I know this doesn’t make sense, but it really was how I was thinking that day. I almost had to call her Sunday to talk me out of it or to contract for safety.

I am looking forward to going out to dinner with my friends tomorrow. I am going to go even if it will kill me. I will just bring my cane and I should be fine. We are going to go to one of my favorite restaurants so I really don’t want to miss it. Plus, I haven’t seen my friends all year because of my stinking pain. I don’t see them often. The last two times we were supposed to meet, I couldn’t go because I was on bed rest. I really am looking forward to seeing them, we have a lot of laughs. So even though it will hurt me, I am going to see them anyways. I will take my pain medication with me just so that I can mingle. Luckily, there won’t be too much walking involved once we get there. My friends live south of Boston, almost near the Rhode Island border. I have to take the commuter rail to get there. I am going with my friend, who cordially invited me and will be treating us to dinner. He does this at least a few times a year, usually when it is my friends’ birthday. He is nice like that.

I think I am going to have to take a strong medication to kill this pain that I am in. I have been at an 8 on a scale of 1-10 for the past hour or so and obviously, my regular pain meds aren’t touching it. I didn’t think they would. I just did too much today. I was on my feet for more than 20 minutes, I walked long distances, and generally ran out of spoons by the time I even got to my father’s house. And there was one errand that I forgot to do, and that was mailing my therapist’s letters. Totally forgot to grab the envelope before leaving and didn’t remember until I got to Starbucks. I’ll have to remember tomorrow to do it because the rest of the week I will not be leaving the house. I need to recharge my spoon counts.

Ankle Chronicles 7

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

area of pain

Ankle Chronicles 7

I saw my psychiatrist today. I told her that the pain that I have been feeling is causing the suicidal thoughts to come back, though in passing, nothing concrete. She wants me to call her if they stick around. I told her I would.

This pain has been going on since Labor Day. No matter what I do, or don’t do, I am in pain. Going up and down stairs is the worst. I finally had enough. I called uncle. So I will be seeing an ankle fellow in a couple of weeks because the head honcho doesn’t have any openings until December. This will be doctor number 14 that I will see for the same problem. Luckily, all my records are in the same system so I don’t have to carry around different records with me from different places. I might have to collect records from the podiatrist I saw, but we’ll see on that. I just know that I am in pain, nearly 24/7. And it is draining me. The past week I have been so miserable I don’t want to go out. And if I do go out, I want to go back home and soon. I need to keep my foot elevated to make it happy. But even that isn’t making it happy anymore. I just don’t know what to do except to keep on taking pain medication. And even that is losing its effectiveness.

I am seriously losing my mind over this pain in my ankle. It’s right below the bone on the outside. I forget the name of the bone and I am too lazy to google it. My PCP says it is a tendon. I know it’s a tendon. I have been dealing with this pain for a LONG time now. I know it’s the peroneous tendon and possibly, muscles, too. I don’t care what the names are. I just want the pain to stop. And I don’t want an injection of cortisone because I believe that it damages tendons more than it helps them shrink. I will NOT have another nerve block in that ankle because when it wore off, I was in agony for three whole days. I won’t go through that again.

I told my psychiatrist I was seeing a fellow rather than the chief and also a smartass remark. She came back with a “calm down”. How can I calm down when the very act of walking is being taken away from me?? Really?? I can’t go anywhere unless I walk. Down the stairs, up the stairs, go to the store, the bathroom, kitchen, etc. Each of these activities causes me huge amounts of pain, the stairs being the worst pain. I have to make conscious effort to hold my foot upright while going down the stairs and the same effort going back up. It’s DRAINING!!!! I have no more mental spoons or physical spoons to do anything else, like brush my teeth or shower. I got a haircut today and needed to shower but couldn’t so I just washed my hair. That hurt more than the shower would have. I don’t think my psychiatrist knows where I am coming from. Maybe she is tired of hearing me complain about my pain. It has been going on for three years now. I bet that is it. People are just so damn tired of me complaining about my ankle.

And I have a reunion to go to on Sunday. HOLY FUCK, I AM FUCKED. I will most likely be standing most of the time. SHIT! I didn’t think about this until now. I will have to wear my dreaded brace. It won’t help 100% but it will help some. I will be sore as hell after and possibly the rest of the week. Good thing I have nothing planned. I really want to see my old coworkers. They are the best bunch of people to know. I will carry with me my little book so that I can get their addresses to send them Christmas cards.

I am suicidal because mentally I just can’t deal with the pain anymore. It has gone on too long. I really need to go to Walgreens and pick up my prescriptions. Otherwise, I am going to go another night of no pain meds. I just wish I had the fucking energy to get them. I would have someone else go, but you need an ID to get the meds. Just great. I have to go. I guess I will stop complaining about my ankle for another day.

How Country Music Touches You

by Midnight Demon, posted in cauda equina syndrome, chronic physical pain, depression, suicidality, suicide

How Country Music Touches You

I have been listening to Pandora for most of the day. I have it on “Terri Clark” radio and I have been listening to all the “old” country that made me fall in love with country, not the rock/rap stuff they have today. A couple of songs in the morning really got to me. By the time my therapy appointment came around, I was very tearful. The songs they were playing was about relationships ending and I couldn’t feel like I was losing my therapist because of the current transportation issue. I was going to see my therapist today but my father interceded. Asshole had an urgent matter that had to be dealt with on his NOW terms. So my sister needed the car to take him where he needed to go. I was pissed that he didn’t call me, because what the hell do I take him to his medical appointments for?? He just is an ungrateful bastard.

So what would have been the last time I see my therapist turned into no trip out there after all. And the songs they were playing just had me thinking that maybe our relationship is over now. But then Faith Hill’s song, “You can’t lose me” came on. I cried harder and when I told my therapist, she said that is our song now. I was already bawling so cried some more. I swear I bawled the first 20 minutes or so of our session. I was just so weepy. I have been up since 0430 so already it has been a long day. I had coffee which gave me the ups but by 11, I calmed down and was just down. Then the songs played and I was weepy. And of course my therapist had to ask how I was doing. Doing awful. I told her the thoughts of suicide came into my head today, just out of the blue, like what if I killed myself. But the thoughts didn’t hang around. My mood just wasn’t “depressed enough”, I guess.

I don’t know what I am going to do about therapy. My therapist doesn’t know that I secretly want another therapist. I just don’t think she is good for me anymore and now that we are not going to be seeing each other face to face for a long time, I can’t help but wonder if the phone is really going to work. I so wanted to be in the same room with her just so she could possibly hold me while I was crying. Realizing that, just made me cry more. I have stuffed animals at her office, a 3 ft bear (Johnny) and two smaller bears (Bucky and Amelia). I miss seeing them, and obviously, my therapist. But finding a therapist, as I learned, is so difficult when you are chronically suicidal. It shouldn’t be like that, but sadly it is. I had called 10 therapists when she first moved to Framingham (the town she practices out of). I couldn’t find one to take me on. Then when I was in the hospital, they found me a center that I could go to. Well, the nitwit was downright scared of me. He was just so nervous. It didn’t work out and by session three, I said goodbye.

I am so drained. I could write about how it sucks not finding a therapist to expand their horizons and just take a chance but I am not in the damn mood. I am tired of trying to find someone that I can count on in the mental health field. Yet there is a therapist that piques my curiosity. Only trouble is, I love his tweets and if I become his patient, I lose him as my twitter buddy. His policy. And I like our relationship as it is right now, though he doesn’t know me from Adam. It’s just that I like his personality. And after reading his blogs, I think that he would be a good fit for me. But I don’t think I can ever cross that boundary. Besides, I am so terrified that he will find an excuse not to see me it prevents me from pursuing the matter. And all the while I was thinking this, I felt like I was cheating on my therapist.

I am at the stage where right now, I really can’t leave my therapist. We are in the middle of important work with dealing with my ex and all she put me through. We didn’t talk about it today. I was too emotional to get into it and she respected my space. Plus, I felt like I was crying over the grief of that relationship, which I never did before. I usually just drank her away, or tried to.

When I was in the kitchen, eating a brownie, I noticed my ankle and foot were swollen again. Pissed me off. My toes looked like Vienna sausages. So I just kept them up. Now they are hurting me. I hate being in pain every single day. Today I looked at a couple of doctors that specialized in the ankle. I couldn’t find a one that wasn’t a surgeon. And a surgeon just won’t deal with you if they can’t cut you. So I am back to square one. I am so frustrated having to find a therapist that is within a 5 mile radius of my house and a foot/ankle doctor that is the same. Why is it so hard when I live in the academic capital of the world??

nuances of Chronic Pain

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

Today has already been a long day. I again had weird dreams and then woke up before my alarm by at least a half hour. I didn’t do anything to wake up. I just went to the bathroom and then went back to sleep until the alarm went off. I should have grabbed a pop tart as I was hungry by the time I got dressed and stuff. I had my coffee and wrote until it was time to see my doc.

I am happy that I my PCP listened to me and gave me enough pills to cover me for the month. However, I am unable to fill it. I have to wait two days for my next refill. I had a feeling it was going to be too early and I was right. Fuck! I have two pills to last me 2.5 days? And then the pharmacist tells me they are changing the classification of the medication. I don’t know what that means. She said I would have to go to the doctor to get the prescription. Well, I do that anyways so I don’t see the big deal. They already ask me for my ID. Now if they need a diagnosis, they are getting cauda equina syndrome.

After my appointment, I felt a little energetic so I walked the long block to the other bus stop. I did it in less than 10 mins, which is good for me. It was 0.4 miles. I am guessing that is my limit without pain. If I walk more than that, then I am hurting, which is good to know. I didn’t have to walk back so that was good. I figure, if I can slowly increase my walk route, from where I walked before (1.2 miles roundtrip) I should be able to slowly lose weight and feel better about walking. But then there are days where just going around the block can cause me pain so I guess today is a good day. It started out rough because I was walking in mud. I didn’t think I would be able to walk to the bus stop when I left my house this morning. But after my doctor’s appointment, I had some energy and felt like I could do it. I know there are time I might not be always able to, but today I count that as an accomplishment. Now, to just hope that I am not hurting big time tonight and the next few days. My ankle is throbbing but it’s mild. I am not swearing, least not yet.

So I am disappointed that I can’t get the new script filled and that next month might be more of a hassle getting it filled. I knew these changes were going to happen. It’s all because a senator’s son overdose on narcotic medication. His belief is that the meds “caused him to commit suicide, not the pain”. What a crock. He is clueless so people with chronic pain now have to suffer because of this idiot, who is not even a medical professional!! I really “love” when these non-medical people make decisions for us. It makes treating chronic pain that much more difficult and no one many commit suicide because they cannot be helped by their doctors.

I did have a problem with making a month appointment with my doctor for next month. I just hope it isn’t too soon or too late. That is the problem that I have been having lately, getting an appointment with my doctor for my pain meds. It shouldn’t be this hard. So I have to wait for the secretary to call me.

I am glad I can walk the distance I did today. I hope that tomorrow I can walk again without pain. But we’ll see what happens tonight.