Used to…

Used to…

I used to write in my journals all the anxiety and fear and depression that swept through my heart. The pain of living night after night in despair so great I thought I would never see the light of day again. It was cathartic and once the words were on paper (or in a word doc like they are now), I didn’t have to deal with them. The feelings were out, I felt better. I didn’t have to remember anymore.

I used to write blogs that had some purpose, whether in my clinical papers I wrote or my daily struggles with suicide and depression and chronic pain. It opened a portal so I could share myself with others who were going through the same things. It was the last remaining joy in my life before pain took over. I have been struggling since. Where I would used to write sometimes twice a day and the odd three, I barely write twice a week, if that many. I’ve lost hope in things.

I used to go to therapy with the hope that things would get better. Despite going through 10 in a short period of time (8 years), I still held on that the “right” one was out there. Therapist number 12 I thought was that “right” person until 16 years later we ended, on our anniversary date. She no longer wanted to work with me anymore. I had been in a lot grief since that day. Took me two months to try and figure out if I needed therapy and why I needed therapy. So therapist number 14 came along (13 was the interim therapist I saw while 12 was on maternity leave). He was different from all my previous therapists. He frustrated me more than any of them put together. I skipped sessions because of the anger. Then there were sessions where I felt we were making progress but like the other therapists before him, didn’t go anywhere the following week. In Jan of this year (2019) I realized I couldn’t stay with him after he told me to Google some relaxation stuff for my PTSD. That was the last straw. I had sprained my ankle during this time and decided going to therapy and working on my ankle were going to tax me like it did before. I got physically better, telling him I would go back to him when I was done. I never did.

By March of this year, I was having serious mood shifts of suicidality. In Jan because pain had been really bad, I planned a date to end it. It was the end of March. I had some of my ducks in a row to end it. But the month came and I didn’t have so many ducks as I thought I did. I fell into despair. Pain was keeping me up. The insomnia that I had infrequently, started to become more chronic. I was spending more and more time awake than I was sleeping. Add in not having a therapeutic relationship and I was barely above water. I kept writing my psych of 26 years how bad I felt nearly every day. We were in frequent contact as she was the only person in my team. The day I was to end it, it was raining. I had wanted to end it outside in a desolate place. The rain spoiled it and I had an appointment with my psych that day. I saw my psych as I have never skipped an appointment with her and wasn’t going to start.

April was torturous. By the middle, my psych wanted me to go in the hospital and I said no. I asked her why she wanted me still alive because at that point, I felt so worthless, I had no idea why she wanted me alive other than she “had to.” She told me some good reasons that I still remember. I tried to hold on to those. I starting thinking about writing another book that would be so outside my realm of mental health but would take a lot of research to do it. It would be a challenge and I hoped I was up for it. That lasted a few days. Then I was back in the despair and this time, it wasn’t letting me go.

I used to think that the hospital was a safe haven, a place to recover and get well, learn new coping skills and then be able to face the challenges outside better. With insurances no longer covering long stays, this is nearly impossible. Some people are lucky to stay past three days. Others stay just 24 hours like that has any benefit. I was hesitant to go back in. I was just about as suicidal you could be without actually attempting and I was getting close. There were a few nights where I didn’t think I would make it through the night. I honestly have no clue what kept me here or how I did it. I stayed for three weeks and then my whole world went to smithereens.

I was supposed to see my psych the following week but she changed it to the following Monday. She said she had some news to tell me and I listened. The institution she had been apart of for 30 years was letting her go. She didn’t go into the reasons and I asked her if writing a letter would help and she said no. I have been seeing her for 26 years. My heart broke in a million pieces but I didn’t know it yet. I still had one week left of seeing her and it would be the last until she was some place else, though she didn’t know where yet. She wanted to stay in academia and Boston is the academia capital. All the while I was to see a new therapist, number 15. The first visit didn’t go well. She hammered me with questions, took my history (I tried to stay away from suicide as that freaks mental health professionals out), and who I was seeing for psych. She asked me about my hospital stay and I thought oh shit here we go. She asked what I was to do with crisis. I said call my psych. But according to her, my psych had “terminated” me. I couldn’t comprehend that. I knew my psych didn’t, she said so and she doesn’t lie. She still wanted to be in my care, to take care of me. I didn’t know if I would see this therapist again. She was nonchalant about setting up another appointment with me. I said I give new therapists at least three sessions before deciding if they would work. She agreed on that point.

I don’t know what will happen the next few weeks. I am back to being highly suicidal without a voice. My one or two places where I catharized my feelings are blank, and have been since the day my psych said she was temporarily leaving me. Wed I got a call to see a new psych and I nearly had a meltdown in the lobby of the building where I first started seeing my psych. But I had to see my pcp so had to keep things together. I have had some medical problems this past week that are still unresolved. I never thought my body would be broken down so much at 43, but then, I never thought I would live to see this age.

I used to believe I would always write in some way, shape, or form. I never thought my words would be hard to reach for. Between the physical and emotional pain, the medications I take, and the pressure of trying to stay some what alive for whatever reason when I just want to fucking die, I am at a loss of words. Some times they breakthrough the constriction I am in, the blinders that say that I should die and nothing else matters. My psych asked me if I would be alright for next week, and she said Monday. I told her I didn’t know. I still don’t know. I want to find that desolate place and end it so fucking much. The thought of dealing with CRPS (complex regional pain syndrome) without pain meds is freaking me out, especially as they don’t work as they once did. It is no fault of the medication, just the disease process. Eventually, there will be nothing that will work for it and I cannot cope with that. I cannot imagine spending my life in so much pain when I already spent 28+ years of it managing the mental illness part of me. I used to believe there was hope out there. Now I am not so sure anymore.

heartbreaking day

Heartbreaking day

I left my house a half hour earlier than I wanted to because I just couldn’t sit around waiting for the bus after I shaved and brushed my teeth. I won’t be shaving the sides and back of my head anymore as I fucked up the back and sides top hair. The razor got too close. So now I will let it grow out. I might let my facial hair grow to, though my mustache is taking forever right now. I wanted to get my eyeglasses today.

I got to Boston around 1 and by 130 I was done. I only bought sunglasses as that was a priority. I was then told my insurance only covered one pair of glasses per year. Fuck. That would mean my glasses would be out of pocket and run at least $300 minimum. I might have to use the online sites to get them. I can usually get them for around $80 or so. I think I am going to try another place than the one I used before, only because the glasses need to be adjusted, though I don’t know what my pupil distance is. I don’t know if I still have the measurements from the last time I ordered. Will have to look.

I then went to the hospital and had something to eat at the café. I already had my Starbucks and didn’t need more caffeine. After eating, I pulled out my journal to write as I had an hour to kill before my pcp appointment. About twenty minutes later I get a phone call with the hospital number. I answer and it’s the psych department wanting to schedule an appointment with the new psych. I swear my heart took a dive and stayed there the rest of the afternoon. I almost lost it after setting up the appointment. I had to see my pcp in like twenty minutes and I couldn’t have an ugly cry breakdown. I stuffed the feelings and then got anxiety really bad. I think my heart rate dropped because after walking to the office and going up some stairs by heartrate was only 65. It should have been higher. My pcp and I talked about pain meds and he wanted to change it to something else, but he didn’t know how to do it. He is going to send me to a pain clinic west of Boston where I see my neurologist. He asked if this was okay and at the time I agreed. I got my meds refilled and then set up another appointment to see him in a few months.

As I was walking to the train station, the anxiety got worse. I didn’t have my meds on me as I didn’t wear the jeans shorts. It was too hot out. I listened to music, I didn’t care what kind at that point; nothing was going to calm me down. I got to the Square to wait for the bus home when it grew dark. T-storms were going to happen and I was going to get caught in it. Sure enough by the time the bus got to the main road where I get off at my stop, the skies opened up. The downpour was sort of refreshing but freaking cold. It came down so hard and fast streets were flooded. I must have walk into at least half a foot of water as my street is at the end of a hill. It was fun walking in the rain but at the same time, not so great for my ankle as it was kind of unsteady with water in my shoe with the AFO and the other’s laces untied. I was completely soaked by the time I got home. I was glad my niece was home as I asked her for a towel to dry off some before heading upstairs. We have ceramic tile floors and I didn’t want to go flying. I am glad my sister was home to get me a change of clothes. I dried off and then put my wet clothes in the dryer. I then got to my room to turn the AC on because even though I dried off, I was sweating a lot. The temp dropped 20 degrees but the humidity went up to 83%. After I cooled a little, I went back downstairs to put my sneakers in the dryer and get my portable charger out of the bag so the wetness didn’t ruin it. I had to charge it anyway.

With all the ruckus of the storm, my anxiety went away but it came back like an hour later. My heart rate was in the 70s so that was good. I thought it might be because I was hungry so had a protein bar. My ankle acted up so I didn’t want to go downstairs. I was kind of hungry but didn’t know what to eat. I didn’t want to cook anything. I still had the breakfast burritos but didn’t feel like having one. Those were for my really bad days. I had some pita chips and called it a meal. By the time I came back to my room, the pain had gone up considerably. I became suicidal instantly and finally made up my mind about it. I had always given myself dates that were a long time away and I had enough. So I may or may not go through with it soon. Guess it will all depend on how I feel that day and where I do want to end it. I am trying to stay so I can see my psych again but I just can’t anymore. The pain is too great and from what I read about the medication my pcp wants to try me on, I just can’t deal with both physical and mental pain at the same time. My heart is broken since I said a temporary goodbye with my psych and I hate having to continue my care at the place she was forced out of. I met her when I was a teen so she is a child psychiatrist. The new psych specializes in geriatric psychiatry. I have gone from one end of the spectrum to the other. I emailed my psych this but didn’t get a response. Also emailed her about what my pcp wants to do with my pain management, which isn’t going to be anytime soon. After 28 years of dealing with my mental illness, I have to call it quits. Monday I had to go to the ER to rule out cauda equina again because of my bladder issues and severe back pain. My degenerative disc disease has gone from mild to moderate and nothing can be done about it. So in addition to being in pain in one shape or other, what the fuck do I have to live for and why?

Pit of Doom

Pit of doom

I didn’t think it was that long a period between blogs but I guess I am writing every 4 days or so. I don’t like it but some days it is so hard to get my thoughts together. I am missing the hell out of my psychiatrist even though it has only been two weeks since I last saw her. We have been keeping in touch through email but it isn’t the same thing. I went through the email communication while she was out during her hip surgery and it was torture. I didn’t see her for about 3 to 4 months while she was recovering. I seem to be emailing her at least twice a day, more if there is a response. I just miss her so much.

In the meantime, my mood has blackened. The suicidal mood that I was in in April seems to have returned. It isn’t quite as deep as it was then, but it is slowly getting worse. I am 100% sure the stress of being home and arguing with family nearly every day or every other has significantly contributed. I honestly don’t feel like I am wanted yet I am expected to do things even though my pain is through the roof. Sunday my youngest sister, who I thought was on my side, came up and put my clothes in the bin it was on top of, all without asking first. I did not want them in the bin because I do not want them smelling like plastic. She said she would throw in some dryer sheets. I got so pissed. I sarcastically thanked her and said it is going to hurt my back bending to get my clothes. She said I was being mean and to use my knees. Then she tells me to live my life, storms back up here and puts my clothes that were in a neat pile before, out of the bin in a messy fashion. I was in tears the whole fucking day as my pain just went through the fucking roof I was so upset. Later that night she calls me and I didn’t answer. She calls me a baby and tells me to be an adult. I say you tell me to live my life then call me a baby? Then she goes on about how living in a “mess” is unhealthy. I say I am not dead yet, nor have I been seriously ill. She then calls me selfish and I say good night. We haven’t spoken since. Last night they were having another argument with my mother, and again my fucking middle sister said to my mother “she wasn’t getting younger”. I have no fucking idea why the hell she is obsessed with age. She is 11 months younger than me and says she is old. WTF. I don’t get it. I do not like the fact they have my mother’s bedroom at the far end of the house while every one else is not near her. Something happens to her, we aren’t going to know till morning. How the fuck is that fair. Her sugar was low Saturday night and she came in my room. I was up because I had used the bathroom and couldn’t go back to sleep. She is supposed to navigate with a low sugar to get help or to the kitchen?? Obviously they didn’t plan this out or think this through.

Last night I was in a dark mood. I wrote a draft of what I wanted to say to my psych. Then sent off another email around midnight as I was in so much pain with my back and ankle I couldn’t sleep and was thinking of ending it. I have been slowly doing stuff in my room and it is costing me big time. I bought 6 bins to put my stuff in. I wanted to do stuff yesterday but all I got done was making space for one bin when I wanted to clear my bed so I could change the sheets. I had spilled Gatorade on the bedding so they need to be changed. I wanted to get it done today but I needed a shower, something to eat, and to pick up my meds. I actually had to go to the pharmacy twice because I forgot my ID at home. By the time I came back the second trip, I could barely make it home. I was sweating profusely, back and ankle kicked up two houses from mine, and I was kind of wishing I was fucking dead at that point. I had to change my shirt again. I wanted to jump into a cool shower but I don’t have the energy. Changing my sheets might have to happen Friday, if I don’t have to go to another pharmacy for my pain meds. Maybe I will go to a different chain this time. This new pharmacy always has problems with my meds every month since the other one closed. I am sick of it.

Back is so flared up my scar is hurting. I had to email my pcp to see if he knew of anything to help. He said maybe lidocaine. I have some lido patches so have been using that at night. It has been helping the pain but not the inflammation. I can’t use ibuprofen anymore because I have been getting flares of gastritis. I am on a PPI so I shouldn’t be getting the gastritis and having to use an antacid to settle my stomach. I switched from morning to evening and that has helped. I still don’t want to risk rocking the boat so am avoiding the ibuprofen. I just been taking Tylenol. Some times the pain med helps if the pain is severe enough but it is mostly muscle pain. I know I need to rest it but I got so much shit to do in my room. I thought every other day would be okay but nope. Just makes the pain worse and then I am out of commission for a week. I am just resting the rest of today. I had made a breakfast burrito so that should last me all day. I stayed in my room all day yesterday to avoid family. I didn’t go down to eat at all. I was going to when they had the meeting with my mother. I feel like my sisters are ganging up on my mother and I. All I had to eat yesterday was a protein bar and half cup of coffee. Think I might have had another protein bar before bed but my stomach was killing me so I don’t remember. I lost eight pounds in a week because of the stress. I either had no appetite or just didn’t feel like eating. I think last night’s stomach pains was hunger pains.

I am holding off on sending the draft to my psych. I have a tentative date I want to end things. I really don’t see the point of going on with the ongoing stress at home. I am trying to hold on to what she said of what I have to give to the world. A person on Twitter that I do not know had said the same thing. She had followed me for a while and said somethings that really made me think I mattered in what I say in my tweets, even if I don’t get likes or comments on them. A follower I know through the red sox said she found the courage to share her pain issues on Twitter because of what I write. It is so damn hard to continue living when you want to die yet know people out there, many you don’t know but know of you ether online or through social media, want you to go on despite you having no desire to.

Tuesday is Broken

Tuesday’s Broken

I was feeling pretty crappy today. Back pain was really bad and I just felt really, really down and worthless. I posted how I felt and someone responded with how I help people with how I feel with my posts and raw emotions. After I asked her if I could share her response and she said I could. I posted it on my IG and FB. I also sent a screen shot of it to my psych as she told me the things this person said, maybe not the way she said it, but the sentiment is the same. While I was thinking of all of this, Sugarland’s song, Tuesday is Broken popped into my head. I couldn’t find a more fitting song in that moment.

Last night I was transferring Gatorade from one bottle to another and ended up spilling it on my bedding. My back was hurting terribly so I wasn’t going to do it right then. I was cold because of the AC so I got some blankets and covered myself with those. The back pain didn’t ease up. When I woke up this morning to take my morning meds, I accidently doubled my dose of breakthrough meds and that made me very sleepy. I have been sleeping on and off all afternoon. I had sent my psych an email around 4 am saying I was worthless. I half expected her to call me but she didn’t. I also told her how suicidal I was feeling because my ankle and foot were no longer dissociating. I was getting crazy thoughts and wanted to go through with them so bad. I emailed her instead and that kind of lifted my load a bit. I have not heard from her at all. I hope she is getting my emails and they aren’t in cyber space somewhere. I haven’t been getting a “could not deliver” message so that is good. I think I have emailed her nearly every day this week. Been trying not to and the more I try, the more I fail. I just send her one email a day unless I am having a hard time, like I was last night. I honestly don’t remember being up at 4 but I must have because that is the time I sent the email. I think I also shut the AC off because of being cold. Today has been really hot that the AC is making my room cold but not an ice box. It is so fricken muggy in the house.

I made an egg burrito for the first time in ages. It was good. I put picante sauce in it before I rolled it up. I found that was better than spooning it onto it with each bite. I might make another tomorrow. I bought the flour tortillas. I have been eating them with chili. I fell in love with a Hormel chunky kind with beans. It has a little bit of a kick to it as my nose always runs when I eat it. I really want to make my cookies but it has been so fricken hot that I don’t want to be in my kitchen at all. Maybe I can convince my sisters to install a wall unit and shush my mother about it. It just makes cooking so hard in the summer.

I was still feeling a little sick after I ate. I think it was because of the pain meds. I took a Zofran so I wouldn’t hurl the contents of my stomach. I had coffee. I wanted another cup but my shirt was soaked with sweat and I didn’t want to stay in the kitchen anymore. The testosterone has so increased my sweating. I hate that I have to wear deodorant all the time now because otherwise, I stink within minutes in this heat, even if I just came out of the shower. I really hate that I have to put off top surgery until the construction is done. I am starting to look stupid because I have facial hair and female boobs. I so hate the things on my chest. I hate them more and more every single day. I think that is why I have been feeling such loathing and worthlessness. I have no idea how to counteract the gender dysphoria. I have been shaving again. I had wanted to stop to see what grew but my nephew said that if I keep shaving it will grow faster so I am doing that. There is one slight problem…I like having a smooth face so I am not sure growing a beard, even though I really want one, is going to be possible. I could just grow it and see how it feels and then if I don’t like it, shave it off. I am not going to let it grow crazy like my nephew does. I can’t stand when men do that. It just drives me crazy. I like when it is neat. Maybe it is just me.

The good news is that because I rested and took meds, my back isn’t hurting me as much. It could have flared up because the thunderstorms were passing through and the pressure changes set it off as well. Either way, I am just glad I can move without pain again. My foot is killing me but that is a constant thing that will never go away. I just hope it doesn’t make me suicidal again like it did last night. Pain had jumped from a 12 to a 15 to a 17 within a few hours. I am really exhausted from it, even though I really haven’t done much today. Tomorrow I want to take down the recycling in my room as it has been growing. I just got some study money for Amazon so I might order the bins I was looking at. I was planning on getting four but I might get six. I was going to buy another foam topper that DOESN’T fucking move but I am too afraid it is going to make me hot because of the gel. I also don’t have a place I can spread it out on for 24 hours. I might sleep in the recliner in the living room if I do get it. It has to air out for that long in order for it to “set.” It is also summer so being in the living room right now would totally fucking suck because it will be hot as hell and I won’t be able to sleep. I am completely heat intolerant because of the nerve injury and T. I might hold off till after the construction so I can maybe place it in the dining room floor for 24 hours and then carry it up to my room. I just hope it doesn’t sell out by then because I will be pissed!

Feeling anxious again so I took my pulse. It dropped 5 points since I last took it. It has been steadily dropping today. After I ate it went up to 89, then went down to 63 and now it is 58. It will probably get lower as the night goes on. I have no idea why my pulse drops when I am in pain. My blood pressure is good; I don’t get hypotensive or hypertensive. I just hate feeling fearful for no reason. I hope tomorrow I can do some more stuff around my room, like putting more clothes in the drawers that I cleared out. Or maybe just put my PJs in there so I know where they are, if I remember LOL. I also had trouble peeing today because I forgot to take my urine retention pill. I was having bad bladder pains and spasms. I was wondering why and then I realized I hadn’t peed since the morning. I wasn’t getting the urge to go because that fucking connection seems to want to work when it wants to work, not when it is supposed to thanks to Cauda Equina Syndrome. My sister was yelling at my mother for something so I didn’t want to go downstairs. I hate that I am walking on eggshells in my own house again because of the bitch bully.