Tag: disability

the 330 am blog

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

The 330 am blog

I’ve been up since 0130 because of pain. My right shoulder hurts and didn’t get better until I got up and started stretching it out a bit. I’ve been in a weird mood since waking up. I feel like I should be suicidal with the amount of pain that I am in but I am not. I don’t know if this is a good sign that I am getting better or what. I think the groups is helping me though I don’t know how because the skills I haven’t learned really. I know what they are but I haven’t worked on them. I have tried the DEAR MAN skill that my therapist wants me to but we had to go over it and then I dissociated afterwards so I don’t remember a thing about what we talked about. I didn’t even know if I had attended the session so I asked her if I did. She said I did. So weird.

I have one more week of groups and then I am done and I don’t think I will go back. It was too stressful. Plus my email kept deleting the emails that the clinicians were sending and I don’t know why that is. I got to make a rule so that it goes to my inbox and nowhere else.

My therapist wants me to send her screenshots of the handouts I am given during groups. I think she wants to make sure I am going and I find this irritating. I feel like she doesn’t trust me. The agreement was that I would text her and Then I would have a response to what I was texting. Thing is the past few days I haven’t had any responses to what I text her about. I feel like this is a one way street again.

I haven’t really participated in group that past few days. I listen but I have been getting bored. Even the group that I thought would be interesting was a flop. I didn’t like it at all. I have been going to the first three groups because those are the most important ones as they are mostly clinical. The first one is just a check in and the other two are either CBT or DBT groups. I find it interesting that they are using both therapies in the program. Both are useful, don’t get me wrong and they do work to their own extent.

I love the therapist that I have in the program. He is so energetic and empathetic and fun to work with. He is a really good guy and I love when he leads groups because he makes them fun instead of boring. He brings this energy that is positive and soothing. I love it. I am going to miss him when I leave. I feel like I should write him an email but I think I will wait as it is the weekend. I am surprised the hospital doesn’t recognize MLK day. It is this Monday and my therapist is off but the program is on. Very weird.

I have put back the weight I lost. I am disappointed in this because I was able to go below 200 and now I am a few pounds over. My struggle with weight is so finicky. It all depends on my appetite and if I eat regularly. Lately I have just been eating one meal a day because I usually full and don’t want to eat anything else for the day. This talking about eating is making me hungry. I think I am going to make scrambled eggs with cheese. I just hope we have the bread.

awake at 3am

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

I woke up at 3

I woke up at 3am and am still up so I ordered breakfast. I am kind of hungry. My mother’s baby monitor alarm went off shortly after I woke up. She had to go to the bathroom and my sister was there to help her. I was supposed to watch her tonight but got a flare after an emotional response to my mother after she called me a “she”. I hate when I get emotional flares of pain. I hate that CRPS is so dependent on my state of mind sometimes.

I had the breakfast but couldn’t finish the 3rd burrito. It was cold and I was already getting full. I thought about making a cup of tea but didn’t want to stay in the kitchen. I wanted to try to get back to bed. So I am writing a blog to exhaust myself before trying to get back to sleep. I had woken up with back pain which is never a good sign. I took some Tylenol to try and settle it down. I really hope I didn’t so something to my back. I see the neurosurgeon next week and I wanted him to sign me off but I am not so sure he will now that my back has flared up. I have been doing more stuff lately so I can understand why my back is flared. The sneeze I had yesterday morning didn’t help. I felt like I pulled a muscle and that is what it feels like.

I have lots to do today. I need to clear off a space in my room so it is less dusty. I also need to change my bedding. My new foam topper should be arriving today. I don’t know when but I hope it is in the morning and not the evening. My hope is to put it on my bed and then watch my mother while it settles on my bed. I have to have it like that for at least 24 hours. So I can’t be on my bed at that time. I am going to need a chair to sit down because I can’t stand while doing stuff for long periods. That will definitely flare me up more. I really need to get stuff done in my room. My sisters want to replace the rug with a wood laminate. I don’t mind. I hate having a rug anyways. I just hope my bed doesn’t roll on the floor. I got wheels on my bed that have sunk into the rug. One of them have broken due to the weight of me and the bed. But they are cheap plastic wheels so I am not surprised. I hope I can remove them and just have a stopper instead.

The other day I had a phone call with the reporter that is doing a book on suicide. He is interviewing people from the study I was involved in last year. We have become good friends. He asked me how the partial hospital was going with it being virtual. I told him how it was and how distant you can be while being online. You really don’t make friends with the group members because there is no real interaction.

I had ordered my meds by mail and I receive one of the two packages. I should be getting the other one sometime today. I hope so because I am running low on one of my meds. I am surprised it has taken this long. I usually get them right away after I get the email that said they have been shipped.

I am constipated again so I just took some Miralax. Surprisingly, I haven’t had the soft stool that I usually get while taking it, which is good because that means no accidents. I have lost the control of loose soft stool. I can’t keep it in anymore. Hard stuff I can but if it is soft and mushy, forget about it. I think I need to take Miralax regularly for a few days so that I can go every day. I feel backed up when I don’t go for a day or so. I feel like I should take 1000 mg of magnesium at night just so I can go. I hate being constipated. It is the worst feeling in the world.

One thing I have noticed since going to partial is that my suicidal thoughts have gone away. I am not so suicidal anymore. But I still wish that I was dead. I haven’t actively planned anything in a while. I think that is good. I will bring it up in therapy on Monday. I haven’t heard from partial about extending my time. I hope they do. I am so anxious about this. I hope they approve it and will be sad if they don’t.

listening to Coldplay

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Listening to Coldplay

I decided to listen to something different so put on some old Coldplay. I am listening to rush of blood to the head. I love this album.

Yesterday I had therapy and we talked a lot. I was shocked that I was able to have a conversation at that hour. I had a cup of coffee before session so I think that helped wake me up. We talked about partial and how I wanted to continue with it but am not sure my insurance would approve. She said that it is very unlikely that the insurance would not approve of more time. I had a meeting with the therapist of the program and we talked about it. I thought she put in the paperwork for it but turns out she wanted to speak to me before she went ahead to do that. I haven’t heard back from her but it is still early in the day.

I feel like the last few times I have talked to my therapist I have been able to say what was on my mind which is a breakthrough of some sort. I know I wasn’t able to talk much on Monday and had a little shut down because I was overwhelmed with feelings. It still astonishes me that all I could say was “bah” and nothing more. It has been so hard to describe what has been going on recently. Things with my mother have been so difficult trying to take care of her while despising her. Her birthday is this weekend and I plan on signing the card “loving son.” I have to get the message across somehow. Not saying this will be an answer but maybe it will help with the misgendering and wrong pronouns.

I’m still in a lot of pain with my ankle and my back. This morning while having coffee I sneezed and pulled a muscle in my lower back. It is better now but still kind of sore. I am going to try and do a few things in my room today and see if I can do that. I want to put the sheets and blanket on my bed away. But I got to clean a spot for them. I plan to do that after I finish blogging.

Next week I have a lot of appointments. I am meeting with my neurosurgeon and GYN surgeon. Not on the same day but it is going to be a stressful week. I am also meeting with my psychiatrist. I am going to ask him for an increase in the citalopram. The Latuda experiment hasn’t worked to help my mood but has helped the voices, which is why I wanted to be put on it. I think an increase in citalopram might help the depression some. Won’t know until we try. I am on a low dose right now so have room to go up.

I need to take a shower today but I am not sure when. Probably after I finish putting away my laundry. I still have a bag of clothes to wash but I think I am going to keep them in there as I have no place to put them. I have to make an appointment with my eye doctor but I need to see a new one as I don’t like one I have. I think I am going to go to a different place, maybe in Harvard Square. I just got to see if they accept my insurance.

evermore

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Evermore

I resonate with this song evermore by Taylor Swift. I have it on repeat because the song was stuck in my head. This song is the first one of hers that means something to me. I think it is because of the line “I had a feeling so peculiar. This pain wouldn’t be for evermore”. There is also a line about dog days which is a symbol of depression. This song means so much to me.

I’ve been up since 0630 since my bladder decided it was going to burst if I didn’t go to the bathroom. I still had trouble emptying my bladder when it is that full. I am pretty tired. I went to groups this morning. The last group was on CBT and I was so bored. I couldn’t relate to what was going on so I just played with my phone. I eventually had to get off social media because of the protests in Washington were getting out of hand. I just hope no one dies. My back and ankle are smarting today so I wanted to finish the laundry I started but it isn’t going to happen. I asked my sister to bring up the clothes for me to fold and put away. She still hasn’t done this.

The other day I opened the birthday card my mother gave me and I wished I didn’t. Right in huge letters on the front of the card was “daughter:” It hurt like a knife through my heart. I am still so damn hurt. Her birthday is this weekend and I am thinking of getting her a son card. Of course this means I have to go to Walgreens or CVS to get one. I am sure I will find the “perfect” one.

I am supposed to be finished with the partial program tomorrow but I asked if I could stay on for another couple of weeks. I am waiting to hear back with insurance approval. My regular guy that I see is out this week so I will be seeing someone else. I hope to meet with her tomorrow. I have a second session with my therapist tomorrow morning. Should be interesting as I don’t do well with morning appointments. If I am able to have coffee either before or during session that will be great. I will probably need two cups as I have group afterwards.

I finally ordered a new foam topper for my bed. The one I have is not staying put on my bed and is really annoying me as then the sheets become undone. I’ve been wanting to get a new one for a while but logistically couldn’t work it out. Now that my room is a little more clearer, I can do it.

I am so tired yet it’s only 1830. I don’t want to take a nap now because it will throw my sleep off more than it already is. I’ve been up so early and it sucks. I just hope that I don’t get over tired. That is the worst and I usually end up with insomnia after it. I need to get up early so I can’t afford a night of losing sleep.