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Hi, my name is joanneisme. I've been diagnosed with chronic fatigue and clinical depression
Hi, my name is joanneisme. I've been diagnosed with chronic fatigue and clinical depression
So I reported recently that I have made great progress combating my apathy and depression by getting off meds known to have a side effect of apathy, and by finding out my brain was oxygen-starved from undiagnosed sleep apnea. But I still have fibromyalgia, generalized anxiety disorder (GAD), cPTSD, and I am still overspending myself as a 24/7 caregiver to my husband… so I still have daily struggles. I know that if I am not very careful, I could lose my progress and return to an unhealthy state where I am “frozen” hiding in my Nest all the time again.
Here are some things I have been doing to keep myself from slipping back into depression and inactivity.
- 30-minutes of sun lamp therapy within the first hour after waking (makes a huge difference for me regarding how alert I am and how energetic I feel)
- Taking a shower no less than every other day early in the day—even when I don’t want to (This is HUGE for me and I use it to mindfully transition from sleepy to awake by focusing on how wonderful the warm water feels on different parts of me.)
- Eating protein, fruits and vegetables for breakfast BEFORE having coffee, dairy, sugar or grains (I hard-boil eggs 18 at a time so they are easy to grab in the morning, and I put them in a bowl with 2 tablespoons of basil/kale/cashew pesto from Trader Joe’s, with a small handful of raw almonds and a piece of fruit on the side. If I feel hungry later before lunch I have a small bowl of healthy grains, like meulsi. This helps a lot to provide energy
- Never skipping morning meds and trying to take meds at the same times every day to better regulate my body/brain chemistry.
- Less screen time and more looking out of the windows. I have my face in a screen a LOT as a way to escape, so I really need to ask myself what else I could be doing when I am tempted to scroll on my phone. So I look around the room to find one small task to do instead, like straightening or dusting—something that will help me move forward toward a happier, healthier life. On days this is especially difficult, I make deals with myself that I can justify some screen time after I accomplish a task.
There are lots more of these small habits that end up having a powerful positive impact on me over time. I have them on a note on my phone so I don’t forget any. Please share some of your strategies too.
#apathy #Anxiety #GeneralizedAnxietyDisorder #Depression #ComplexPosttraumaticStressDisorder #Fibromyalgia #ChronicFatigue #SleepApnea #PTSD #BrainFog
It’s Friday you didn’t just survive another week you lived another week! How amazing is that! I know we are suffering but at the same time in every moment of our suffering we are growing and learning so much if we pay attention. We are growing in empathy, compassion, perseverance, endurance , character, hope, love for others, understanding. This isn’t for nothing our weakness is our strength! Today lift up your heart and be grateful that you are a diamond being forged in the fire and your story will save someone else’s life! Just tell it! I know it’s scary and triggering and painful but someone today needs to hear a part of your story! So they know they aren’t alone! You are a professional Overcomer, and so so loved by God and by me! Keep living regardless of your situation don’t let your health define you let it build you into something stronger you are resilient!
#PTSD #GeneralizedAnxietyDisorder #MentalHealth #OCD #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #ChronicFatigue #Hope #Love #strength
I am a 74-year old grandmother who recently had a visit from my daughter and her family including my grandson of 5! Tho I enjoyed being around them, my painful condition made it obvious just how secluded I was from them! Naturally they spent a lot of time WITH me, however I was not able to go on outings with them including Disneyland, an outdoor train ride and just plain playing in the park! Will I be remembered as an “old lady” to my grandson and not the vibrant youthful version I feel on the inside? #Fibro #ChronicFatigue #Fibromyalgia #chronic pain.
Today I have two appts shrink and therapy I was up a lot with adrenaline rushes and I’m tired. I am the one always giving encouragement but today I just could use a pep talk as I stare at my salt water to drink and coffee. I know it will be a great day once I get up and get moving but when your tired it’s hard to do that. I look forward to my time with God so that motivates me and then hanging with my dog and child. But man on these exhausted days I could use a full on cheer squad 😂anyone else feel me?
#POTS #AutonomicDysfunction #GAD #ChronicFatigue #Anxiety #Adrenaline #exhaustion #Hope #coffee #professionalovercomer
It’s Thursday and a new episode of Creative Copes Podcast has been released on all listening platforms. This is episode is a deep dive into being diagnosed with Fibromyalgia. Go have a listen on your favorite app and let us know what you think!
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linktr.ee/creativecopes
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#Podcast #creativecopes #Fibromyalgia #ChronicMigraineSyndrome #ChronicVestibularMigraine #Migraine #BrainFog #Anxiety #MyalgicEncephalomyelitis #ChronicHeadaches #ChronicIllness #ChronicPain #ChronicMigraines #ChronicFatigue
Grief has hit me in many different ways today. Grief for a community I lost. Grief for my grandma who died in 2019. And grief for the person I used to be and will never be again due to an illness many act like I'm faking, it's in my head, or just downright condescending.
My mom texted again to say goodnight. I have not replied. It was a stupid Bitmoji again. It hurts like hell seeing it. My heart feels stomped on.
On top of the emotional pain, the physical pain keeps getting worse daily. It was a little better yesterday and I had hope, a tiny bit of light at the end of tunnel, it was swiftly put out. I was stupid to have hope. Abled body people do not get what it's like to start to have a tiny bit of hope that you're body is going to behave, not be your fucking prison, then it get snatched away. I'm losing hope and I think I should just forget about getting better. I'm back in darkness. I can't be positive or find a silver lining right now. Not with this. I can't even joke about it anymore. It's hell. It's literal hell.
I long to do things and go places. I want to go to the library, I want to go downtown to the library next month for events and things, do pride in June, do the comic con, do things. The harsh reality? I probably won't be able to. I need to accept it. The problem with accepting this is it makes not want to live. This isn't living. This is hell. I hate my body with a fucking passion. It betrayed me more than anyone has in my honest opinion and it's my own fucking body. My mind has betrayed me too. I don't know how to live like this.
How do you fight your own body and mind when you're trapped with it 24/7?
#CheckInWithMe #chonicpain #SuicidalThoughts #SuicidalIdeation #ChronicIllness #Fibromyalgia #CFS #MyalgicEncephalomyelitis #ChronicFatigue #CPTSD #MajorDepressiveDisorder #Autistic #Autism #Anxiety #ChronicAnxiety #PanicDisorder #ADHD
In a precedent miniSode to our deep dive into Fibromyalgia we talked about Brain Fog as a symptom of chronic illness and have disabling it can be. Please Go listen and tell us what you think:
creativecopes.wixsite.com/podcast/episodes/episode/428d599d/...
And stay tuned on your favorite listening platform as we release the deep dive into Fibromyalgia this Thursday 3/30-23.
#BrainFog #FibroFog #ChronicFatigue #Fibromyalgia #ChronicVestibularMigraine #ChronicMigraineSyndrome #Migraine #FMS #MyalgicEncephalomyelitis #CrohnsDisease #Endometriosis #Anxiety #PanicDisorder #ChronicHeadaches #ChronicIllness #ChronicMigraines #ChronicPain #creativecopes #SpinalCordInjury #Whiplash
One of my favorite parts of erythromelalgia is describing my illness and showing people pictures of what my flares look like.
Me: "Electric charged acid in a campfire flowing through my veins."
Friend: "Really?"
Me: Yes. Here are the pics. Do you like the several shades of red and how the purple color gradient in my toes changes from violet to indigo to eggplant?"
Most people are very compassionate, but they're still surprised at the severity of it all. Because who wouldn't be?
How about you? What do people find surprising about your illness and all you deal with?
#ChronicIllness #ChronicPain #Erythromelalgia #Disability #Anxiety #ChronicFatigue #RareDisease #MentalHealth #MightyTogether #ComplexRegionalPainSyndrome #CheerMeOn #MyalgicEncephalomyelitis #PeripheralNeuropathy #SmallFiberNeuropathy
One other thing: there is swearing in this. If that's not for you, please move on.
I wanna scream it hurts so bad right now. I wanna just fade away. Psychiatrist/counseling office says they support me but last week my counselor outright ignored a trigger so I told him I can no longer work with him. He also said he only does 12 sessions but gave me more. Excuse my language but how the fuck can anyone work through anything in 12 sessions? Especially when someone doesn't trust counselors? Dude outright said it's surprising I even opened up to him and then pulls this shit. Today I'm in extreme pain and mental health is declining and last week the my psychiatrists MA said they can't support me all the time, use the crisis line. Well news flash the crisis line has made me worse and has hurt me, I've called back once before a call back sobbing and the lady asks "Why did you call back early?" As I was sobbing. So yeah call a line that only gives a fuck if you're actively suicidal and willing to go to the hospital. Which I've explained to them.
Oh and hospitals? If you want to hear extreme trauma, I'll inform you of my psych ward stay last year which my providers know about. My mom also knows and threatened to send me back to the same place. Well news flash mother you don't have power of attorney, all you can get is cops to do a wellness check who frankly won't do anything unless there's a danger, and I can get my psychiatrist to vouch I'm fine with your so called "threat" you think I did. Well guess what? That wasn't a threat at all or some stupid shit like that. I've asked people and they're confused. And I've never been a daughter to you? Well guess what you've never been a mom because I lost my mom when grandma died too because you've never been one.
Oh and saying shit when I ask for support like "oh what do you want me to say go...." I'm not going to say the rest before I bet people can guess.
Then you text to me say goodnight nightly like nothing is wrong. Like you did nothing. You even said you have no responsibility for anything. You even said you're confused as to how you're responsible. Remember the 6yrs of lawsuits you put me through when I begged crying not to do them against the man who molested and ****** me? Well that caused 6 additional years of trauma. And you said I had to do it for you and dad because you were hurt too. Well what about me? The one who lived through that shit? The one was relentlessly attacked by attorneys? The one who blames themselves still because you put blame on me by saying I gave you PTSD? When I wouldn't even wish this shit on him. Why am I the only one at fault here? WHY? Because you can't understand how a 15-16yo can be manipulated and groomed by a 50yo to hate their parents? Because you can't understand how it was traumatic? Well guess what I said no a couple times and learned fast it wouldn't go my way. I did say yes to a lot of things and blame myself to this day. 13yrs later.
Then to add the cherry on top, my brother had a fucked childhood cause of me. He told me he witnessed all the arguments and had to see that. My mom told me some lady yelled at them in a store due to what happened with that man or something I said and he was there. He went to his school counselor crying why his sister was always mad at the family. And worse. Yeah I know I fucked his childhood thanks for the reminder.
If anyone read all this, thanks and I apologize if it was triggering. I tried my best to warn people. I am struggling but trying my best and that's all I got right now. There is more to what my parents have said and done. I don't know how to handle it anymore or handle people defending them. This also doesn't cover the stuff I've been through with doctors the past few weeks or a lot of other stuff that has happened. It's been hell. My counselor seriously didn't think there'd be an emergency last Monday, and over a week later hell has just gotten a lot warmer, between the pain getting extremely worse, my parents and other things. I think I better just settle in and accept it by now. As a song from Bring Me The Horizon says: Even hell can get comfy once you've settled in.
#CPTSD #ChronicIllness #ChronicPain #MajorDepressiveDisorder #Anxiety #Autism #Autistic #PanicDisorder #toxicparents #SexualAbuse #SuicidalThoughts #Fibromyalgia #CFS #MyalgicEncephalomyelitis #ChronicFatigue #EmotionalAbuse #Advice #help #Arthritis #MedicalTrauma #counselors #SexualTrauma #ChidlhoodTrauma