Sufferer ***Updated*** Hi, Chronic Illness & C-ptsd

[The Hermit King]

I traveled back in time to welcome you to the forum. :happy: Also you joined the day before my birthday. Just a random useless fact but still cool to me.

 

[99Phoenix99]

I traveled back in time to welcome you to the forum. :happy: Also you joined the day before my birthday. Just a random useless fact but still cool to me.

Hahhha thanks for the welcome Over9000. If I didnt know any better I'd say you must own a Delorean! Also happy belated birthday :P

 

[blackemerald1]

Welcome to the Forum 99Phoenix99. I hope you find some peace and help here. It is a place where you can find people will share their experiences with you.

I am not comparing our trauma but I too was "trialed" on so many drugs and therapies, all of which made me worse, but not as invasive as you experienced. As Saao said 'trauma is trauma' and we all have different experiences and consequences to our situations.

In the end I was thrown in the "too hard basket" and now live my life on Benzo's and other drugs that should be for short term use. I have also "lost time" due to PTSD and drugs. I can relate to your reference about being a 'Guinea Pig".

I am lucky now because I have a team of specialists trying to help me. They talk to each other about my PTSD and other complications and illnesses that I have.
I wish you all the best.
blackemerald1

 

[Deleted member 12723]

Hi and welcome to the forum. It is nice to meet you. I think you will like it here, it has helped me so much.

 

[99Phoenix99]

The last time I posted was in 2013 (age 23) and figured a new introduction was in order.

I was in a good place when I stopped logging in, however between 2013 and 2019 I have since spiraled.

My PTSD stems from traumatic medical procedures due to chronic health issues. I thought I was on the other side by no longer living in the past and moving on with my life into the future. I was doing well in college and getting healthy. That didn’t last very long and my health went into a steep decline.

I was arguing with my therapist, explaining to her something was seriously wrong with my health and that was making my depression worse. She argued with me that my depression was the cause of my health decline. Essentially we were arguing what came first, the chicken or the egg.

I tried to work things out with her, but we kept coming back to that argument and after a strained few months I called it quits with my therapist of roughly 2 years. I felt so invalidated and betrayed by the person I trusted to be my only emotional confidante. I couldn’t handle dealing with her AND my health decline, so I chose to stop all therapy.

Multiple doctors told me the same thing “your depression is making you sick”. I lost the ability to drive, it was no longer safe because I was constantly seeing black dots in my vision, my cognition slowed, I was dizzy, chronic full body pain, my body temperature would rocket between sweats and shivers. I felt like I was slogging to follow basic conversation and I was left winded from the barest exertion. I couldn’t remember conversations.

I medically withdrew from college for a 4th time. I just... gave up. Clearly I was non functioning and based on all the Doctors I saw, it was because I was depressed...but Meds didn’t help. Physical Therapy made it worse. Anytime I talked about it, it only made me feel worse and frankly I thought I was crazy. Emotionally I checked out. I didn’t want to be alive. Isolating wasn’t hard, I couldn’t leave the house alone anyways. Cognitively I was incoherent, I couldn't understand or retain anything I heard or read.

Almost three years I lived like that. A specter of a human. There would be some moments of clarity and I’d realize my quality of life was barely existent, it would trigger me so badly I’d immediately shut down again.

Three years I was told my frail health was my own fault. For three years I believed it. If only I could get a hold on a depression, why couldn’t I just exercise, why couldn’t I just socialize, what was wrong with me that I couldn’t fix myself? I was lucky my parents were both alive and taking care of me but I was so ashamed that I became so dependent on them. Walking became difficult and ultimately I needed to get a motorized scooter to get around. For three years I was told if I’d lose weight I’d feel better (my heaviest I weighed in at 280lbs and I’m 5’8).

Turns out... it wasn’t depression.

I found out in the end of 2015 that I had multiple rare diseases.

One was a genetic disease creating faulty collagen production called Ehler’s Danilo’s Syndrome. Which causes pain to all joints and makes me prone to subluxations and dislocations. My whole life I was just called “accident prone”. This explained why at 21 I needed jaw joint reconstruction.

Autonomic Failure- my body couldn’t regulate my blood pressure and I wasn’t receiving enough oxygen to my brain.

Small Fiber Neuropathy- the sheaths to my nerves are frayed and I’m short circuiting and it’s causing pain.

Mast Cell Activation - an autoimmune disease where my body can’t stop producing histamine and I was having allergic reactions daily. Jokes about the girl in the bubble? That was actually my reality. I had all the symptoms EXCEPT anaphylaxis, which is why it took so long to diagnose.

These were new diagnoses on top of already having Ramsay Hunt Syndrome, common variable immune deficiency, TMJ, Trigeminal, occipital, and post herpectic Neuralgias.

For 6 years I’ve been in and out of hospitals & Dr. appointments, & surgeries.... all of which are triggers.

Now that I’m actually being treated for my health conditions my health is .... more functional. I don’t need the electric scooter anymore. Now that my health isn’t 100% a nightmare that I’m trying survive, I’m trying to heal. For a year I’ve been seeing a new therapist that has a chronic health issue herself.

I opened up to her for the first time about my PTSD this month ... and I’ve been flashing back. HARD.

It seems I’m at a point where I can’t suppress my memories or feelings anymore. My body is finally getting better and now my mind and soul is demanding the same.

She didn’t realize how much PTSD was part of me... and to be honest I didn’t either.

Logically I know I couldn’t have done anything differently but irrationally I’ve been telling myself I should have done better. I’ve been driving myself crazy with anger and guilt with all the what if’s and should haves.

So here I am, almost 29, and back to square one.

 

[Friday]

Welcome back :D

 

[blackemerald1]

Welcome back from me too.

I am so glad you are on the road to recovery mentally and physically.

I think we have all come a long way since your last intro., I have for sure and I'm sooo happy about that too. :)

 

[EveHarrington]

Welcome back! :hug:

I don’t think you’re back at square one. It may feel that way, but you have learned things along the way and have grown, even if it doesn’t seem like it.

 

[99Phoenix99]

Welcome back :D

Thank you :)

Welcome back from me too.

I am so glad you are on the road to recovery mentally and physically.

I think we have all come a long way since your last intro., I have for sure and I'm sooo happy about that too. :)

Thanks BlackEmerald :) it’s nice to come back and see some familiar screen names. It makes me feel like that even if it has been a long time, it’s still the safe place I remember.

Welcome back! :hug:

I don’t think you’re back at square one. It may feel that way, but you have learned things along the way and have grown, even if it doesn’t seem like it.

Thank you Eve.

I know you’re right, but it’s been hard seeing the forest for the trees lately.