u/just-a-tired-soul

Tldr: the title, just sick of hearing it constantly

It started after a particular bad crash and has just stayed.

Been to the ER and been checked over by my doctor and done a EKG. Everything is normal.

IT'S SO LOUD! Day in and day out like some sort of steam engine. Every heartbeat feels like a small earthquake spreading through the left side of the body.

I can't ignore it. It makes it hard to fall asleep, to rest during the day. It's always seems worse when I'm really tired and really need to rest. Not to speak of if something is actually stressful or triggering, then it feels like my heart is tryna jump out of my body altogether.

I can't lay on my side on a pillow bc most pillows echoes the heartbeat and make them even louder!! I have been sleeping on a bundled up blanket as a temporary solution... And lay on my back mostly during the day.

Sadly just another part of whats been true for me: things can always get worse and they do. The symptoms just keep on coming.

Hyperfocus for me is that my brain just keeps returning to the subject, over and over. I try and do other things, I try Journaling, I try meditations. Everything I can think of. But I just keep returning to it.

It's honestly starting to drive me insane. Not even my anxiety meds help at all, all they did was remove the anxiety, I kept thinking about it.

It was a call last week that was very upsetting, in many ways. But I mean that's almost part of the deal, to be misunderstood and mistreated by healthcare every now and then.

Somehow I have been through many a bad healthcare experience before but have never been so stuck on it like I am now.

My mind also just keeps spitting action plans and ideas on me, but I don't want to take any action. I know I don't have the energy for it. At it's height I wanna write a message saying "hey I don't want to be contacted by this person again".

TLDR: The title! Comments like " just exercise", "think better" "you need to be more exposed to sounds and light, not the opposite"

Despite having throughly noted down my experience in notes, apps, calendars over years now.

Despite clear patterns of PEM, and clear patterns of pushing through leading to gradual decline.

Most days a small voice in my head says "maybe if you just exercised all this would go away? Maybe it is all in your head? Maybe that nurse was right, avoiding sound has made you more sound sensitive!" etc

Does anyone have any good ways to handle these thoughts? I used to have a really good therapist who was my voice of reason.

My new one was going on about how I'm too passive. A nurse at the ER a few weeks ago said if I just exercised I wouldn't be in this situation. It's just hard to not let it get to you.

I don't act on these thought but they do get to me and make me doubt myself. I'm scared one day I will start acting on it. It's hard to have "hard skin" when you are so weak and tired all the time...

TLDR: thought maybe the psychiatrist would listen to me, and be able to explain to my doctor. But instead they twisted my words to produce a "you are so afraid of getting worse you don't try anything" narrative

Just. Exhausted. I should have declined the call but idk you are only human. And you want to be understood. So you try. And just maybe I thought they can be on my side, and explain things to my doctor.

I previously wrote a post here about my doctor wanting me to get help from a psychiatrist to get more "activation".

I feel like there was a pre set narrative and at the end of the call my words where used against me.

"maybe you are so extremely afraid of getting worse you don't want to try anything? And you are so scared in the moment to lose your stability you don't want to do anything?"

not at all what I said. I mistakenly mentioned my fears about trying a new medication after finally having a week or two feeling a bit more stable.

And I tried my best to explain, to tell him it's actually an issue that I want to do things all the time, and it's only recently I have gotten that persistent will to try things under control, and hence the slight improvement.

"I'm worried about you, you used to be such an active person and now you are not, maybe you have just had bad luck as you say with all the pain flares but maybe it isn't why you are not getting better"

No one but me is more painfully aware of what an active person I used to be!!! Genuinely wanted to scream at that point 😭

And Yes. The pain flares. The pain that I said I'd rather die than experience again. Yes maybe it is something that could have made me worse. Maybe? But who knows? 🤦🏻‍♀️

At least my new gamin gave me a notification after 15 minutes "your body battery have run out, you need to rest". So that was a positive that it worked. To hell with everything else.

EDIT: there was this off hand comment about "ADHD or if its something else like aspbergers". My doctor's question about if I had physical sensory issues all makes sense now...(I don't). I'm genuinely worried they have interpreted this whole situation so sideways? There is nothing wrong with aspbergers (not even a used term anymore??) but I'm 100% I don't have it. Maybe they have seen my sensitivity to light and noise and difficulties speaking and drawn their own conclusions on top off everything?? But it's because I crash as soon as I fucking leave my house. I'm so rattled by this whole experience

And thank you all who have left a comment, I'm so angry for what we all have to face on top of everything else!! And so happy that at least we have each other! I will see if I have the energy to come back and reply in a couple of days 🙏🥺