Tag: disability

Chronic illness and disability causes grief

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

This was posted in the CRPS and RSD group on FB.

CHRONIC ILLNESS and DISABILITY causes GRIEF: by: Angela Piccolotti

No one tells you that you will grieve when you become disabled and/or chronically ill. Grief is expected when a loved one dies but you don’t expect it when you experience a chronic illness or disability.

The process is the same. You go through all the stages of grief: denial, anger, bargaining, depression, and acceptance. These stages are our attempts to process change and protect ourselves while we adapt to our new reality. The feelings are the same. The only difference is that instead of a loved one dying, it’s like you’ve died. Your life’s hopes, dreams, and plans are dead. Who you were and who you wanted to become are gone. Everything you used to be. All forever changed.

You break your own heart over and over again because you have hope of a restored body and life but no matter what you do you can’t achieve them.

It’s like you’ve died, but still you’re still breathing and you still have a pulse. You’re a ghost in your own life, a shell of your former self. You are haunted by your old self, your old life, your old hopes and dreams, your former health, all you used to be and all you used to be able to do. You remember everything you’ve lost. It’s heartbreaking!

You feel like you’re just taking up space. You feel so worthless. You can no longer DO. You can only sit by idle as life goes on without you being able to participate in it. It’s agonizingly painful!

feeling depressed and another shitty night sleeping

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

Feeling depressed and another shitty night sleeping

I had a shitty night sleeping. I woke up around 0130 and had to pee. I stayed up for about a half hour then went back to sleep after drinking a half a bottle of Gatorade. I shouldn’t have done it, I know, but I did and then I woke up two hours later to empty my bladder again. This time I was awake. I had a bad dream just before waking me up and I was still pissed off at the doc appointment yesterday. He asked why I was on Latuda because I don’t have a diagnosis of psychosis in my file. I said it is because I have depression with psychosis. I am trying to shake this guy off but he is in my headspace for the time being. I told my mother about the appointment and she said I was on too many meds. Fucking a. I really felt crummy after that.

I’m still waiting for my catheter company to tell me that my insurance will cover the new prescription order. I received an email from them this morning so I don’t know if it was one of the automatic ones or if the insurance has gone through and they need information from me. I then cringed and called the dentist to see what the next step is for my tooth. She said it was a two part procedure and it is expensive. I asked if we could do a partial or a bridge or something. She said she would ask the dentist and get back to me. So I am waiting.

I need to take a shower today. It has been more than a week since I last showered. I have been feeling some gender dysphoria lately so kind of why. I am not happy with my body at all, especially the hair growth on my upper body. I sent a message to my doc asking if she knew why the pattern was inconsistent. I seem to have more hair on my left side than I do my right. I also hate the hairy boobs I have. Just makes me depressed. I can’t believe July is almost here. I see the top surgery surgeon in a few weeks. I have been aware of how nipples are on men’s bodies and been taking screen shots of the ones I like that I want for myself. I don’t know if it will be a graft or just a resize of my current nipples that they will do. I really hope that my weight doesn’t get in the way of this. It will just crush me if it does.

I am waiting for the pharmacy to text me saying my meds are ready. They have been “in progress” for several hours now and it still isn’t done. Last time it wasn’t ready till after 1400. My ankle has been throbbing since early this morning when I was up. I last took my pain meds around 0400. I have one pill left. I don’t want to take it until I know the pharmacy is going to have my meds ready. I got to fucking call them. Every fucking month it is something and always with the same meds. Always. Such a pain in the fucking ass.

thirty years of therapy and what I have learned

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

Thirty years of therapy and what I learned

I’ve been in therapy since I was 15. After 30 years and 15 therapists, I’ve called it quits. Not because I was cured because I couldn’t get the care I needed. Not all therapists are the same. And even if someone has the credentials I am looking for, doesn’t mean it will work out. I have seen social workers, psychologists (PhDs and PsyD), psychiatrists, and psych RN. The first 10 I saw within the first 10 years of starting therapy. Each therapist I saw didn’t last more than a year. One resident I saw lasted three years, till the end of her residency, but she moved on and I didn’t see her again. I tried DBT (Dialectical Behavioral Therapy), CBT (Cognitive Behavioral Therapy), and the various psychodynamic therapies out there.

My suicidal career took up talk for the last 10 years of therapy, maybe more as it got more serious and I didn’t want to live anymore. I started researching into the different treatment options and found very little to help myself. The therapist I was seeing at the time was stuck in her ways didn’t want to adapt to what I wanted her to do in therapy to help me. It was frustrating. Then I saw a PsyD with the credentials and I thought yes! This is going to work out finally. But it didn’t because she didn’t have empathy and couldn’t give me validation when I needed it the most.

What I learned from my research into suicidology is that the person needs to tell their story of why they are suicidal. It needs to be heard by an empathic person who validates why they are suicidal. They also should appear eager to listen and to know more about the person, their pain and suffering. To find out where it hurts and to try and heal it the best they can. I can go on about things like perturbation, lethality, constriction, and psychache but those are just words no one uses anymore.

Living with pain— physical or emotional— for years is a traumatic stressor. The experience of living with pain evokes many of the same responses that being subjected to abuse or neglect does. — Dr. Glenn Patrick Doyle

I came across this quote while scrolling through Twitter. Dammit this guy always posts something when I am in the feels. He is correct. Pain does have the same responses as being abused or neglected. I have suffered physical pain consistently 24/7/365 for the past twelve years. Each time my foot or ankle flared up, I had flashbacks of when my back gave out ten years prior. I had to go through a series of checklists to make sure it wasn’t happening again, each time, nearly every single day. Once I had a diagnosis for the pain the checklist checking stopped but the feelings of the trauma didn’t.

My therapist who I just stopped seeing, asked me what I was looking for in therapy. But I didn’t have the words. As I am reading the book Building a Therapeutic Alliance with the suicidal Patient, I am figuring out what I need in therapy. I knew she wasn’t able to give me what I need. I am not really sure what I need. I know I want someone to talk to tell my story to. For them to listen, empathically and compassionately to what I have to say about why I am suicidal and why it has become my only option left to me.

Saturday Blog 06112021

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

Saturday Blog 06112021

Today I am dealing with an influx of junk mail being filtered to my inbox rather than junk mail folder. I must have gotten at least a half dozen notifications today so far that are junk. I don’t know what is the problem. I sent a message to outlook hoping to find a reason. It’s jut ridiculous. The emails are all bogus. But I think I got a handle on it as most of the emails are from the same domain.

I sort of woke up when my med alarm went off at 0830. I made the mistake of falling back to sleep and now I feel like all I want to do is sleep. I only woke up once during the night and that was to go pee. I hope when I go for my test next week that it records the urge sensation when I am cathing. It is so uncomfortable to be going about my business cathing and then get an uncontrollable urge to pee. Sometimes my stream becomes stronger and then urine goes everywhere. It is messy and I hate it.

I had a cup of coffee and I might have a second cup soon as I am so fricken tired. I think I am going to heat up the chicken pot pie that I have for lunch. I haven’t really eaten anything today. My mother made zucchini and had a little of that but it was wicked salty.

Ohio State and Nebraska are playing each other in college football. Every year they play each other and every year I am conflicted who to root for because they are my favorite teams. OSU is beating the Huskers right now. I think OSU is going to beat them, again. Nebraska has been holding up some good defense though. It is a close game right now. And OSU wins 26-17!

My damn shoulder is killing me today. I put heat on my ribs as the muscles are sore. My bicep keeps throbbing along with my wrist/forearm. I can’t wait till I see the doc on Monday and they decide what they are going to do. I hope I can delay PT for a few weeks until I get my back PT in. I don’t think I need the full six weeks as usually one to three dry needle sessions is all I need. I start PT on Tues. It is with the same PT that I had earlier this year. She is good and I like her style.