the need to write

The Need to Write

I watched the ballgame most of the way via Twitter. We won 5-3. I didn’t think I was going to last because I was really tired but I knew if they came back and I missed it I would be upset. I am glad I didn’t miss it.

So I lied down and of course pain coursed through my ankle and foot like they do, 10 times worse tonight. I had to take a strong pain pill and some Neurontin. I was taking all shots tonight. Fuck it. I don’t care. I need pain relief. My foot is on fire. My ankle is searing pain. And I have no fire extinguisher other than the Neurontin. My anxiety is up but I already took some Ativan because my right foot was doing this dance tonight that eventually got painful. It just kept on curling up on me, on it’s own. Annoying.

I was able to sleep for a few hours but then woke up because I had to go pee. Damn bladder. Now I am up and I don’t think I can go back to sleep, least not for the next hour or two. I am surprised that I just slept a few hours given the amount of medication that I took. I am still feeling a little paranoid and psychotic. The voices the last few days have not been pleasant. I can tolerate them but it is exhausting. It takes all that I have to ignore their constant bickering, their sarcastic remarks, their criticism, and their commands. If I am doing something one way, they want me to do it another. It’s tiring. I had to take 12 mg of trilafon yesterday to counteract them. I didn’t take it all at once, just every 4-6 hours I took a 4 mg pill. It was the only way to quiet them down.

Later today, I plan on printing out my book. It’s going to be a huge deal because I have 140 pages to go through. Granted the first few are just fluff, just the title page and then copyright page, stuff like that. I want to see if I can do this without an editor. My stories are short so if I take them one at a time, it should be a piece of cake. And unlike my first book, there is nothing to really trigger me because it’s mostly about my psychotic experiences, which I think are funny and amusing. Course, when they were happening they were scary as all hell. But now they are not that way anymore.

I texted my therapist that I was in pain and lazy because I might not be making the pumpkin cupcakes like I wanted to. I am still cursing the Peapod delivery for not delivering the right kind of pumpkin. Now I have to go to the store and get it. But I don’t want to go out later today. I know I am going to be tired as shit as it’s in the middle of the night and I am awake. Plus, it’s going to be raining most of the day. I should have gone to the store yesterday but I was too tired.

completely wiped out

Completely wiped out

I basically was on the go since I woke up this morning. I went to Starbucks. Had my drink and breakfast, wrote a little bit and then played with my phone. Afterwards, I went to CVS to get my mother some things and a binder for myself for my book. I plan on printing it out sometime this weekend to go over it and see if I repeated stories and also to edit it.

After this, I went into Boston to get my prescription. They didn’t have it ready so I had to wait. Finally one of the medical assistants came and got me and I left. By the time I reached the train station, I was wiped out. I think walking with the brace is slowing me down some and it’s tiring. I wanted to go to the grocery store to get pumpkin but I was too tired. I might go tomorrow.

I get to Walgreens to have my prescription filled and they tell me they need to call my doctor to verify it’s okay because I take the other medication. OMG. Seriously? Luckily I am not out so I can wait the weekend but still, it’s an annoyance. They said they will text me so we’ll see. I still haven’t received notification about the trilafon. I might have to hound my psychiatrist for that. This is why I hate when my refills aren’t in sync with appointment visits.

My foot/ankle is throbbing again. I just want to go to sleep but I need food. My mother offered to make soup but I am not in a soup mood. I am kind of in a tuna mood. But I think I need sleep more than food right now. I am getting cranky and I hate being cranky.

Pain Insomnia

Pain insomnia

I never wanted to believe in this phenomena called “Pain Insomnia” because I feared it would happen to me if I did. Well, it’s happened. It’s after midnight and I am not sleeping because of pain. I am still listening to music but my foot and ankle are having a war as to which is going to hurt me more. So far my ankle is winning.

I started writing in my journal. I figure that would help me sleep. But nope, it didn’t. I wrote out my “suicide note” in my journal so in case someone reads it should I die they know they aren’t to blame for my death. I have tried everything I could to keep going but the pain is just too much. I just keep on taking pills left and right and that is not the kind of life I want to live. It’s bad enough this pain took away my jobs, my walking ability, basically my dignity. And still no one knows why I am in pain. Some docs have given me the elusive diagnosis of “complex regional pain syndrome” but I don’t fully meet the criteria for that because I don’t have color changes. I just have pain. All the damn time. And it’s worse at night so no doc can see what it is when I am not in the office during the day because that is not when I have pain.

My psychosis is not helping. I skipped a couple of doses and it caused the symptoms to return. Part of it is because my doc wants me on 1 dose a day but I need 2 a day to get relief. So I have this battle with the voices about taking my meds and it isn’t pretty. Mostly the battle is just take the bottle rather than a couple of pills. They don’t understand that by doing so, I might die. But they don’t care. Since when do auditory hallucinations care what you do when they command you to do something? They just want you to obey them. It’s gotten better now that I am back at 2 a day. I still get paranoid though. There was a guy at Starbucks today that was really antsy. I thought he could read what I was writing in my journal. Honestly, anyone that can read my handwriting, I give credit to. It’s complete chicken scratch.

My strong pain pills is ready to be picked up. I will head into Boston tomorrow and get it. I hope there isn’t a problem in the pharmacy. All this talk about opioid awareness has me wicked paranoid about filling my prescriptions. I haven’t had a problem but I don’t want there to be. It’s bad enough I have problems with my antipsychotic getting filled because of the new fucking system my hospital has, and that isn’t a controlled substance!

So while I wait for pain meds to make me sleepy or exhausted, I write till I am completely out of words. Insomnia sucks but pain insomnia is worse. One of my new Twitter follows was talking about how CBT (cognitive behavioral therapy) helps those with chronic pain but her insurance doesn’t cover it. I find that very discriminatory. I wish I could help her with it. But I don’t know where she is in the world. Hell, I am even trying to get into a CBT program yet I haven’t been called yet. I was hoping to hear from them by the end of last week and here it is a week later and still no word. I just hope my suicidality doesn’t hold them back. I am always fearful about this. I have had so many therapists deny me their services because of my suicidal history.

I need to go to the grocery store tomorrow to get pumpkin puree so I can make pumpkin cupcakes. I like to bake and I have this new recipe. It looks easy enough. I want to bring them to my therapist when I see her on Tuesday. I also have an appointment with her on Monday. I hope it goes well. She knows that I am suicidal. We have been talking about it for the past couple of weeks. Seems I am more suicidal this time of year than at any other time. She wants me to see me through the new year but I think she is wasting her time with me. I just feel so awful and not sleeping doesn’t help matters.

I had picked a date but I don’t think I will go through with it. There are a few things I haven’t done yet that I want to do before I end things. I was hoping to do it this week but pain stopped me yet again. Next week I will be really busy so the things I need to do will have to be the following week. And again, it all depends on my pain levels to do these things. I hate that I have to be dependent on pain to basically tell me what I can and can’t do. It really sucks.

I remember the last time I visited my cousin in Washington, DC. We went to the Smithsonian and saw a few museums. It was really fun even though my camera wasn’t too cooperative. My leg flared up the next day and I was laid up for most of the weekend. I felt really bad because I couldn’t do anything but put my leg up. Some vacation that was. I stood too long and it just flared up pain in my ankle, much like it’s doing tonight, except I didn’t stand too much today. I did go up and down the stairs a few too many times though.

Random 566

I finally took a shower today and because our bathroom heater is still broken, I froze my ass off, literally. It wasn’t fun. I quickly dried off and got dressed. I then checked the time and realized I had just enough time to catch the next bus to the Square. I wanted to get some more Pike coffee and my espresso drink that I am falling in love with. It’s National Coffee Day, so I tweeted about having my four shots of espresso.

When I got to my seat, there was a guy there eating what I am guessing nuts of some kind and charging his phone. He was really antsy and made me nervous. I tried to ignore him as I had my coffee and pumpkin scone. I then tried to write in my new journal. I must have written a page and a quarter before I got tired of Mr. Antsy man and had to leave. I just didn’t feel comfortable. I felt like he could read what I was writing. I forgot to take my night time dose of trilafon last night so I have been unhinged most of the day, even though before I left the house, I took a dose. I just have been feeling paranoid and stuff. Doesn’t help that the voices have been loud and obnoxious with their commenting on everything I do.

I needed to get some eye drops and I love that I did everything through my phone rather than through Walgreen website. I had to buy 2 things of toothbrushes because I had to have $35 in order to get free shipping. I always forget to buy them so now I am stocked for the year! LOL

It is cold today so of course my lower back is hurting. I can’t stand too long without pain. It happened on the way home where my back decided to flare up on me. It was a long way home, even though I was only a block and half away. Think I will use a heating pad tonight. The stiffness in my left calf has eased. I am guessing the hot shower helped along with some stretches.

I wish the public transportation system would send me a letter soon about my disability pass. My current pass expires Oct 23. I don’t want to put a monthly pass on in case they transfer cards, then I will lose the pass. I think $20 should be enough for the month as I don’t use the trains as much. I mostly just use the bus.

Monday, I am supposed to meet up with some friends and go out to dinner. I will be wearing my AFO as I can’t trust my ankle without it. Since using it, I have been in less pain while walking but I still have flare ups at night. Seems lying down is a trigger for pain and even when I nap now, the pain is there. I can’t sleep sitting up, though I have tried. It’s only when I am completely exhausted do I get the sleep I need, pain or no pain. It’s not the way I intend on living the rest of my life. Something has to give. It’s been more than a week and the CBT people still haven’t called me. Nor has my PCP’s office called with my much needed strong pain meds. I hope they get back to me tomorrow, early enough so I can pick up the script. I can’t go Monday or Tuesday of next week because of commitments so the earliest I can get into Boston would be Wednesday and I might run out of my meds by then. I have just three pills left and if I have another flare up, I am going to use them. I hope I don’t get a flare up.