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Where do you find joy in life?

Happy throwback Thursday, to happier times, when I was still able-bodied! I was in my early twenties & this was at the park. I had given birth to two girls before getting sick. Well, before being diagnosed I should say! I’ve been sick most of my young life. It just wasn’t until later on that it became more readily apparent. I used to love the outdoors & grew up near a lake. I was always very adventurous & outdoorsy growing up. It was my refuge. Now I’ve been entirely cut off & rarely if ever venture out. I stay isolated in my dark bedroom with little to no stimulation. My only access to the outside world is an iPhone. Ever since getting it a couple years ago my hands became deformed from arthritis. I have swan neck deformaties in my right hand & dupuytren’s contracture in the left. My elbows stay permanently bent & I have ankylosis of the shoulders. I have visited many orthopedic surgeons & upper extremities specialists to no avail. I have lost so much range of motion & mobility from chronic widespread inflammation. I’ve been trying to seek an official diagnosis for Sarcoidosis on top of my other rare disease. It’s very disheartening. #ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Spoonie #CommonVariableImmuneDeficiency #Arthritis #ankylosis #Anxiety #Depression #Agoraphobia #BipolarDisorder #MentalHealth

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Accepting My Conditions

I am new(ish) to The Mighty, and been recently working with my therapist on accepting my health conditions. Why is this so difficult to do so? #MentalHealth #Agoraphobia #Anxiety #Fibromyalgia #InterstitialCystitis #Migraines #degenerativediscs

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Things since then

Things are different. They are quieter now. And slower.

I am not fighting for the things I need to survive anymore. My boyfriend helps me. We are still looking for appropriate providers near his home, where I am living.

I don’t have to yell anymore for someone to help me. I don’t have to beg for care. I am not alone at night when the nightmares wake me and I panic.

My panic and dissociation are still here, very present. But like I said, quieter.

I still feel foggy. But I have help.

My boyfriend has done what I never thought I could have. He has helped me find safety when I was disabled, couldn’t get help, and wasn’t getting heard. I am so grateful.

I am also so disappointed by the immense failures that I saw- from the system, my family, and my friends. I should have had some way of getting safe with the supports I had in place and the number of ways I tried to access them.

I really hope I can continue to advocate and talk about what happened to me so that changes can be made, even if it’s just the way one person thinks.

I went on vacation this weekend. I got a bad migraine and felt some weird GI symptoms that were pretty painful. Luckily I got a lot of sleep and spent a lot of time in the hot tub. ❤️ I have been attending some groups and I got chosen to do art therapy with an Art Therapy student from a local university. I am really excited for that too. I’m working on changing my care over to better professionals while I reach out to the OMAS board about what happened to me through the years. Especially while trying to file grievances and no one helping me.

Thank you for reading this little update. 💞

#Agoraphobia #Anxiety #ComplexPosttraumaticStressDisorder #PostTraumaticStressDisorder #PTSD #Trauma #PanicAttacks #PanicDisorder #MentalHealth #ChronicVestibularMigraine #Migraine #ADHD

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Where are the safe spaces in your life?

Here at The Mighty, there are few things more important to us than cultivating a safe space for people of all identities and health conditions. The internet is a vast and sometimes dangerous place, and we strive to maintain a level of safety that not many other places or platforms prioritize.

So, what exactly qualifies something as a safe space? It can be a digital community or website, a physical location like your home or workplace, or it may even be a person that you know you can go to and rely on no matter what you’re going through.

💡 P.S. This is a wonderful Mighty story about the importance and value of safe places for those who specifically live with agoraphobia, but it can be applied to any mental health condition too: What Having a 'Safe Place' Means to Someone With Agoraphobia

#MightyMinute #CheckInWithMe #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Disability #Suicide #Grief #Autism #MentalHealth #Caregiving #Cancer #PTSD

What Having a 'Safe Place' Means to Someone With Agoraphobia

"Having a safe place is key."
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See full photo're kinda kicking my butt here lol. Anyone else on their 2nd or 3rd antibiotic already? Attempting to 'push through'?

We're in the 2nd month of 2024 and I'm on my 2nd antibiotic 🙃

(there was a high chance it would've actually been be my 3rd lol. Thankfully my asthma fixed up)

Anyone else feel...almost punished by the universe lol?

I barely go out (part fault of chronic conditions, part agoraphobia tendencies) and yet I still get sick, sick 🤔

I'm told by so many to 'push through', but I am pushing.

Everytime I get to the toilet in time. The times I make it to work. Remembering key dates. Having a bath. Drinking enough liquids. Replying to that text...

To all those pushing already by just existing: I see you and I am one of you. It isn't easy, but we're really trying our best💜

#ChronicPain #AgoraphobiaWithoutHistoryOfPanicDisorder #Agoraphobia #MentalHealth #ChronicFatigue #Fibromyalgia #BackPain #Asthma #Anxiety #Depression #FunctionalNeurologicalDisorder #IrritableBowelSyndromeIBS #Jointpain #AuditoryProcessingDisorder

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Update- client rights violation

A lot has happened since Monday when my case worker set up a meeting and then it ended up being a completely different thing.
The agency tried to minimize the entire thing/blame me. They wouldn’t let me have space to talk about what happened or the impact of it (I had HUGE flashbacks and panic attacks for the entire day and night after) and the case worker (also a supervisor) tried to determine the agenda for the meeting that was scheduled after. The meeting we specifically set up to talk about the therapy appointment.
The case worker then told me she just used the wrong terminology. No. She didn’t. She explained it as a therapy intake. Not an update for my diagnosis that they do periodically. I had agreed to do a therapy intake which is different. This was a violation of my client rights. Even if she “miscommunicated,” that miscommunication was verbally and in writing twice.
And she tried to explain it away like I shouldn’t have had a problem with it and what’s the big deal. She even tried to postpone our meeting because I was “too upset” and she “isn’t trained to handle that.” Remember: she is a case worker and a supervisor in a mental health agency. She has handled much worse than a 37 woman over email who is emotional- not even aggressive or violent. And because of her triggering me and then denying it and not apologizing or acknowledging and just saying “let’s move forward”. It goes back, again, to being accountable for what happens.

So another client rights violation noted and will be addressed with the local board. My next step is the state board.

Thank you to anyone reading all of these stories. I know it’s not what is normally posted here but it’s becoming my way of processing and remembering. And of course, getting support, thank you!!!

#MentalHealth #CheckInWithMe #Disability #Anxiety #ComplexPosttraumaticStressDisorder #PostTraumaticStressDisorder #PTSD #ADHD #ChronicVestibularMigraine #Migraine #Agoraphobia #PanicAttacks

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Agoraphobia really isn't gettting the 'new year, new me' message 😒

Sigh, learning the hardway that just because a goal is in your new year's resolutions, does not make it suddenly easier to attain 😭

Totally just had to cancel a medical appointment I've wanted for so long. Prepped for it, but when it came time to get ready to go...The anxious feelings, discomfort and swarming thoughts were too much😪

However, agoraphobia may have won this battle, but the war's all to play for!

Sending virtual hugs to all those fighting the long fight with agoraphobia. You're not alone and there are more of us, than many realise 💜💜💜
#ChronicFatigue #mentalhealth #agoraphobia #agoraphobiawithouthistoryofpanicdisorder #anxiety #depression #generalizedanxietydisorder #functionalneurologicaldisorder #chronicillness #irritablebowelsyndromeibs #backpain #auditoryprocessingdisorder #asthma

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