Mixed Connective Tissue Disease (MCTD)

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MixedConnectiveTissueDiseaseMCTD 3w

I just want to shout

And now I have that song stuck in my head. Any who. I am mentally and physically not great.

I have been spiraling sense my doctors appointment last week and it’s only getting worse and the feeling of unending doom.

I was so happy when I got down to 14 pills daily ; hear me out I was on 20 pills daily (not including my 3 as needed pills). I have set that boundary with myself that I will not take more than 20 pills. I already am internally fighting with myself because I hate taking pills to begin with.

Well good news bad news . My blood work looks as expected and I was able to hold weight for once.

Now I am back to 17 pills daily from May to September then jump right on up to 20 pills a day starting October to April. So really taking that part hard.

World feels like it’s crushing in on me from all angles. Personally physically home life etc etc .

Trying to hold it together. Not even seeing me in the mirror anymore . Just feeling empty and non existent. Reflecting a lot. Which really is only making things worse in my head. Not feeling like I’m making a difference in the world. Feeling stuck on the side of the stream. As everything goes on around me.

Missing my sunshine and rainbow positivity. Can share that love with others but for some reason can’t give myself any of that love. Maybe I don’t feel like I deserve it. Wishing I was onto my next life. This isn’t the life I ….

17 reactions • 7 comments

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#MentalHealth #Anxiety #MixedConnectiveTissueDiseaseMCTD #Spiraling #ChronicFatigue #RheumatoidArthritis #AutonomicDysfunction #Depression

MentalHealth 4w

Spare Glue Anyone ?

Screaming internally physically mentally
Silence
No one hears a peep
Keep it together
Court in session as my mind battles it out
Shortness
Breathe

If a tree falls in a forest does it make a sound if no one is around to hear it

Mask On Tight
Say Cheese

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Shackled

Luckily I have always been a planner and more on the ocd side than anything. Maybe that’s my up bringing and having the constant pressure of needing to be perfect and the go to person. That’s besides the point.

I am having a lot of inner battle with myself. On the subject of allowing to be helped, setting my own personal boundaries on what I am able to do , feeling guilty . It’s all kinda not going so well in my brain.

Especially when I feel like I am getting push back in my workplace . I can’t tell if they actually are or if it’s my mind reading into things more than I need too. I have submitted letters from my doctors on multiple occasions and made sure it went to my boss and HR.

Why do I feel guilty. I feel like I’m doing and trying advice from my pears and doctors but I really don’t talk to many about my diagnosis. I feel very trapped confined under a microscope and I think I am being my own worst enemy.

Are there good ways to overcome fighting yourself and fighting may or may not be issues when it comes to reasonable accommodations.

Planning always planning trying to keep ahead trying to stay above the water as I’m tied down by shackles … just keep swimming
#MixedConnectiveTissueDiseaseMCTD #AutonomicDysfunction #RaynaudsPhenomenon #RheumatoidArthritis #MentalHealth #Anxiety #ChronicFatigue #Depression

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Say it ain’t so

Honestly a reality that I got smacked in the face with. At the same time I like to think it made me grow. I learned to have more patience for others. Especially when it comes to people I hardly know.

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AutonomicDysfunction 1mo

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I’ve always been used to good byes that were never said but happen.

It’s an even more interesting view when it’s because of something you can’t control. You notice who makes the effort no matter how small, the ones that speak and there’s action vs no action.

I’m not one to chase.

I wonder though people always have come and gone through different chapters in life. Grew up moving every couple years I’m used to adapting and overcoming .

I realize as sad as it makes me there was no means to stopping it from happening. I push myself way more than I should and pay for it each an every time. People I would do anything for poof .

I’m realizing some that I wasn’t as close to actually make more of an effort . Family and friends alike . It’s interesting how some I new and was close to when young but faded has been re kindled . Also people that put on a show of our relationship or time together just poof . Like it was never there, they keep on flowing down the river in there life and chapter without me.

The older and as my symptoms progress I realize my circle is smaller and smaller yet I just don’t know … anyone

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Lost

When a saying speaks the truth.

No longer feeling like myself. The once “educated , ambitious, hardworking, tireless” person I was has become so small.

Keeps trying to swim faster and harder to keep up. Drowning and feeling wiped out trying to keep my head above water. How long can I keep treading at this pace to keep up with my day to day.

Don’t want to give in, don’t want to let it win. I won’t and can’t let this consume me. I need to find me again.

The one who had a smile on her face that was genuine and not forced. The carefree soul that was living at one point has become nothing more than text on a page of memories .

Has anyone seen me ?! The real me ?! Not this empty auto pilot husk I have become floating .

77 reactions • 16 comments

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Perspective

Discussion of the day I had today. Why do you always say “I’m fine” when your not.

My answer was “it doesn’t go away, this is for life. So “I’m fine” sometimes is all I can muster.

It’s easier than the long winded conversation of explaining what’s wrong and have you done this or tried this.

When I have hit my limits, that’s when I am un fine . I will tell you then because I am doing everything in my power not to just keel over.

I don’t want to be skirted around and treated like egg shells. I just want to be treated like a human being. I don’t want the tippy toes or the looks you see displayed across peoples face, even when they try to hide it. Then it just gets awkward .They think they are helping and making it better but in reality it just exhausts me and frustrates me.

Why can’t the conversation just end with “I’m fine” and move onto another conversation.

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Shadow

I read a article today about a celebrity that has MS and advocates for it. There was a quote in the article that said “I don’t enjoy living anymore” that really spoke to me. Not in the sense of stopping life but in the sense I feel stuck deflated.

I don’t feel the passion or the drive to live. I’m not feeling love for myself what I do where I am.

I just exist and go through the motions. I feel hollow like a shadow filled with so much empty energy. Energy that just keeps me taking one step after the other . I don’t enjoy it . I don’t enjoy my day to day anymore. I don’t enjoy me. I don’t enjoy activities. I don’t ….

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