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I don’t even know where to start

I was diagnosed with MERRF (a mitochondrial myopathy) almost 20 years ago. My health has been a rollercoaster in those years - I would seem healthy as an ox a few months then bedridden the next. Today I am moving ok, but use a wheelchair to get around outside of my house. My balance and coordination is terrible ( I’ve fallen three times in the last month which required stitches twice on my head). My gross motor strength and ability are a zero and I require plenty of time to sleep.

It has now been a week that my 13 year old daughter and I left the hospital after a 5 week stay. The one person who helped me physically is now with a g-tube, requires the entire pharmacy in one day, has every piece of DME imaginable, and now in a wheelchair of her own. The one who helped me out physically is now completely out of commission and I am now her nurse 24 hours a day.

She is my only living child, my baby, and there is nothing in this world I would not do for her. But I am tired. Caring for my medically complex child as a disabled person is by far the hardest thing I have ever done in my life. It has only been 9 days being home from the hospital and I am beyond drained both physically and emotionally. Physically, this is hard for me because I simply do no have strength and endurance. I often cry because I have trouble getting up off of the floor or pain from walking back and forth from one room to the next. Emotionally, I am exhausted because I have been doing all of this on my own. While in the hospital, both my parents and (now ex) boyfriend said they would help both me and m daughter at home. Now that we are home, my parents don’t help me with meals (I can’t even tell you the last time we shared a meal together), or with anything you would think a parent/grandparent would do. Because I demanded my brother to stop smoking in the house they all stopped talking to me. My then-boyfriend also said he would help, but tells me to “control my emotions” and stop complaining. After 4 years, I thought he would understand and allow me to be vulnerable with him, but I thought wrong. I just broke up with him tonight and to be honest, I am not too sad about it. My daughter is always going to be my #1 and if he can’t support me and ultimately her, then he’s not the one.

But now, more than ever, I am sad and disappointed that the people I thought cared most about my daughter and me abandoned us. They spoke promises that they had no intention of keeping. When I needed love and support most, they all turned their backs on me and left me alone. I am so sad and lonely. I don’t have anybody to talk to. I don’t have a shoulder to cry on or someone to just listen. I am alone and I don’t know what to do. #Caregiving #MentalHealth #MitochondrialDisease #Anxiety #Depression #ChronicIllness

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Elephant in the room #1 . Suicide #Depression #MentalHealth #Anxiety #Christianity #Relationships

I have posted about this before but I feel inspired to start a series about “Elephants in the room” that Christian’s might encounter. Let jump off with a big one, suicide.

I’ve been told, often, by well meaning Christian’s that suicide is selfish and that people who take their life go to hell. They are both falsehoods.

The desire to live is very primal. How often have you seen people who have received a terminal diagnosis do anything and everything to live. If attacked we go to any length to survive. Suicide therefore is very counterintuitive. Now the family of those who take their lives suffer enormous pain.

Four years ago I walked out to my car with the intention of driving away and taking my life. I knew that 12 tablets of this medication is generally fatal. I had 60 stashed under my spare tyre. I was shocked when I lifted the tyre to find them missing. A dear friend in Thailand knew of my plan and notified my family.

The reason for my suicide was I had been falsely accused of an historical crime and charged by the police. After a 3 week stay in a mental hospital we started the long process of proving my innocence. The legal system is faulty. I knew that intellectually but I was stunned that even having irrefutable proof I was overseas the year this crime is supposed to have occurred it still continued. One week before the trial the police admitted they had made a serious error and it was all withdrawn. This however took over 2 years.

I am in a good place today.

As to hell and suicide. It is definitely not Gods will we take our life. Yet, in Gods eyes, sin is sin. The murderer crucified next to Jesus had no opportunity to do good. Yet Jesus assured him he would be in heaven that very day.

Christians battling mental illness need love, support, compassion and help. Not false condemnation.

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Work issue #Conversation

I work as a home health aid. I go to a lady's house for 2 hours.
We mostly talk for 2 hours, I am
mostly company for her. She mostly talks about her life with her husband and different things about her family. I am not a big talker. Her husband died 2 years ago. He was her #1 priority. It is hard for her. The issue is she always talks about the current events she doesn't like in the country. Usually the negative ones. She can be extremely opinionated, and thinks she right.
I joked a couple times and said she should run for Mayor. I couldn't take it today. She was so extreme and thought her way was the only way. I said she focusing on negative and I wouldn't like seeing her blood pressure go up. Than another tirade of stuff. Does anyone have any suggestions of what I can do to steer her away from current events. It started getting better after I said something about her blood pressure. She said she wasn't upset. She probably wasn't. But I had to try something. Then we talked about pet dogs. I don't have much to say, because I go to bed early and only see friends once or 2 x a week.

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Fuck the things I did wrong, I'll start focusing on the things I do right.

So yesterday I washed the dishes, did my laundry, put away food in tupperwares, finished everything I had to do work-related too, and I even did my eyebrows and organized my tasks succesfully, but all I could think of is about that one tupperware I could've sworn I washed but in the end I didn't, and I put the food in anyway thinking it was clean. Out of all the damn tupperwares I washed and filled with food succesfully, I couldn't stop thinking about that one that I forgot to wash. That's literally all I could think of right before bed, overthinking about it until I fell asleep.

My therapist told me I do that a lot and he's right: I keep doing things the right way and accomplishing little things day by day but I always bring up the things I'm not doing right. Yesterday I was able to identify that behaviour but I couldn't do anything but think about that one tiny little thing I didn't do. Today, I decided to leave that behind and fucking appreciate the things I accomplished. Sure, doing the dishes, doing my eyebrows, putting away food in the fridge and organizing my daily tasks sound simple: I guess that's what people usually do all the time, but for us struggling with some kind of mental illness, we know it's a big step to take the initiative to do all those things. But even if we do 9 things right out of the 10 things we did, we always overthinkg about that one thing. Anxiety takes over and then you wonder if you're actually making things happen. Today I say we turn the page and start channeling our energy on congratulating ourselves for all those small steps we take to get better, to be better.

We gotta find a way to stop beating ourselves up for "not doing enough" because doing "enough" is relative and very different for each one of us: I bet for someone here right now, waking up and getting out of bed is already a big accomplishment, and that should be celebrated. For someone else, going to work is already a big step forward, and we should be proud of that. If someone close to you, that you know is struggling, shares that they got to wash the dishes and fold their laundry, I bet we would never be like "hey that's nothing, what about that one shirt you didn't fold, and that one tupperware you forgot to wash. What's wrong with you? Finish what you started." Instead, since we are good people and we are empathetic, we would celebrate their milestones and encourage them to keep going and to keep trying. We would be very patient and understanding and would never highlight the things they did wrong because after all, they did their best. So why do we keep treating ourselves that way? Beating ourselves up for the things we still have to work on?

So I'd like to invite you to treat yourself as a friend, exactly as how you'd treat a loved one. If you need to have a conversation with yourself, go on. Talk to yourself nicely, patiently, as how you'd talk to your best friend when they're feeling down. After all, we live inside our head all the time and we've got to make ammends with older versions of ourselves that were just trying their best, and encourage of current version to keep on taking those little steps towards feeling better and doing better. Sure, we can rely on our close ones too, but I can't stress enough how important it is to be able to rely on ourselves too whenever we need some encouragement or even a shoulder to cry on. Of course it's not easy, but we're getting there, and talking to ourselves in a kindly manner is a great start to be our #1 fan. Sounds cringy and a little corny, but we gotta try. If not us, who? and if not now, when?

#CheckInWithMe #CheerMeOn #Depression #Anxiety #MentalHealth #PersonalityDisorders #ADHD

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May 21 | 9:01 PM (Journal Entry #1 )

"

I don’t feel good.

Depressed for some reason.

Not sad.

Not irritated.

Just so tired.

So uninterested.

So detached.

I was fine this morning.

Better at least.

Now my head hurts and

I don’t know why.

Now tears are filling my eyes.

Breathe them back in,

Don’t let them fall.

Breathe them back in,

Let them flood your heart.

Let them drown your chest

And make it hard to breathe.

I long for the day it all slips out.

It feels so good to cry, to weep.

But it’s been so long.

Trying to write myself a fucking poem.

Just stop.

Speak.

I have nothing to say.

I never do when I feel like this.

Otherwise I can talk.

I like the person I am when I’m feeling fine.

But that’s only sometimes and it’s unpredictable.

How can I believe in myself?

How can I trust myself?

When I want nothing more than to not be awake?

I tell myself that I must persist, but why?

For those I love.

For those who love me.

My family.

My little brother.

But what about those without family?

How are there people who feel like me and don’t go through with it?

What are their reasons?

Who am I to be a leader when I myself want to burn?

You’re not you right now, Chris.

You’re consumed.

Let these thoughts pass.

Maybe in the morning you will be better.

Breathe.

Sleep.

"

#Depression #MajorDepressiveDisorder #Selfharm #SelfharmRecovery #Journaling #Hope

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Griefs Grasp

#MentalHealth You know there was a twitter meme the other day and it was something like “When you overestimate or underestimate your presence in peoples lives” something like that and while I went heeheehee same time I was going “it’s not really a joke though”. Because when people treat you like they do….it doesn’t take long to figure out where you belong. How you fit into their lives. If they engage with you a lot or if they only keep you around for specific things.
I thought I had a place in his life. I thought I had enough meaning in his life. Like he did mine. Like he wasn’t the #1 thing like he wasn’t ….light. And sun. And I get it ok I get I idolized him too much I get I cut him off I know I was …I know it was bad. But I cared. I cared with everything I had and to not see that returned at all. Not even an apology or excuse or a goodbye or a single “**** you” to show what I at least meant …
It was like that was it. He has the final say. I don’t belong, I don’t matter, I am expendable and small and pathetic and I am everything that everyone says I am but HE has the last word. His voice carried more weight than anyone else. And he saw me and stripped me of what little I had left.
I don’t feel like I belong anywhere anymore. I feel the friendliness and kindness but I no longer hold onto it with the strength that I did. Because it’s fleeting because it’s not real because it’s limited because people are lying because He made it clear how people really see me. That is a lot of power in someone’s hand but no one seems to understand that. He had the final say so. He has the final word. He was my FP. And FP’s carry so much weight in our lives and minds and our souls. He took my entire essence and smiled. Before rendering it to dust. And I let him because I had no say so. I had no voice. There is no voice in that grief. There is no voice in that loss.

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What’s your go-to strategy for managing your A1AT symptoms?

Chronic health conditions like A1AT are a lifelong commitment of sorts. And while there is no cure (for now!), there are usually go-to strategies we can put into practice to improve our quality of life.

What’s your #1 tip for symptom management these days?

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

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Where’s the beginning? When does it ever end?

I wake up fighting a losing battle, not against anyone but myself. I go through each day saying exactly what everyone expects me to say, never revealing my true identity. It makes me sick Truthfully, no one wants to hear anything negative, but yet they want to bitch about some stupid BS that doesn’t mean 2 shits to anyone.
If people weren’t so wrapped up in their own lives, someone might actually be concerned.
One thing is for certain, you do harm to yourself, they jump to moments to criticize and make you feel like you’re selfish, non- caring or just a piece of shit for thinking of no one else but yourself!
I wish I could put myself #1 , I’m tired of faking my emotions, my feelings, my thoughts… it drains the life out of me .
I literally have to take on another personality just to be able to cope with people, she is strong, she is beautiful, and she doesn’t give a fuck!
So, you do you, do what you have to do to get through every single day… no one knows your story, honestly, no one cares!!! May you find peace and happiness…. ✌️ #

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💡The light finally turned on

So, I had previously been working on writing a book. About my 14 months of a toxic abusive relationship and how it affected not only me but so many others. Also, about my healing process. I had to stop as it was bringing to much back all at once. Especially since I was using pen to paper. Rough draft #1 , then editing it and rewriting for draft #2 . Some of the situations I had endured caused me agonizing flashbacks after I was able to get out of that relationship. Hour long, I was physically fighting what my head was remembering. Only I didn't have visual flashbacks. They were emotional ones. Much harder to realize it's not real. I only saw gray but had this all consuming fear come over me that I couldn't fight or try to control. Anyway, the editing was bringing to much to fast and I started to disassociate more frequently as my brain was trying to protect itself. Triggers I've long since be able to control were throwing me for a loop. So for my mental health I knew I needed a break. Now I started processing the idea of a book 9 months ago. I hope to bring more awareness out to the public about the tragedy of abuse, I hope to bring anyone who is still suffering in an abusive relationship hope, inspiration and to know they aren't the only ones. Lastly I'm also doing it to aid in my healing journey. I've been out of that situation since November 6, 2020 so it's around 2 1/2 years. I have had extensive therapy, 3 different ways. I know it's very hard to start talking about the hell I went through, yet the more I bring out any certain situation or trauma the less hold it has over me. Ah, sorry I got caught up in the moment. But my little light bulb went off when I was at mom's last week and I was staring off in space and it hit me! She has an older model, still working desk top computer. I asked if I could use it to type out my book. She said that was fine. (She never uses it anyways). Then mentioned she doesn't have a printer, how was I planning on getting it off the computer. I told her I would get a flash drive and download it on that. Then take that to get printed. That first time on it typing, I had been working for around an hour to stop and make us a sandwich and chips. Cleaned everything up and went back to work. She got my attention finally and said she thinks I need to take a break before I lock up my back or hips. I looked up and then around. Noting that the lighting was different. I had been typing for over 2 hours. Yes I was very stiff. But but typing I can add in anytime, anywhere. I don't have to keep rewriting the same things. Which is awesome because I decided to really tell my story I had to start when tragedy first came across my path as how that affected the rest of my life.

Anyway, thanks for listening/reading my feelings. God Bless everyone!

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