#CheckInWithMe: Give and get support here.

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#CheckInWithMe: Give and get support here.
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New Dr.

I need advice if anyone has any 🤞 My blood work indicates that I have rheumatologic disorder(s) going on, I have a little bit of Raynaud’s, and chronic pain. My nervous system is kinda wired differently because of CP and the last doctor told me that I was so unique she didn’t know what was going on with me. I also have been losing function in my hands progressively for the last 3 weeks or so. I am in high school, so I’m younger than the average rheumatology patient. I just want answers! I’ve been living with chronic hip pain for the past 7 years. I’m terrified of a new diagnosis, but I don’t want to keep losing function in my hands without answers either. Thank you for reading, sorry for being negative but I’m just anxious ❤️

#MightyTogether #ChronicPain #Anxiety #CheckInWithMe

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I feel absolutely miserable and sick

Since I posted about the migraine it got worse. I almost barfed. I'm super dizzy and shaky and achy and nauseous. I just want to lay down and sleep but the pain is not going to let me sleep. My friend suggested I keep a food journal in case it's from something I'm eating. I don't think I can stick to it. I've tried it in the past but it didn't work out for me.


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I need someone to #CheckInWithMe because…

Our #CheckInWithMe program was inspired by the friendship between Mighty staffer @xokat and a fellow spoonie. It was born from the very simple idea that one of the most powerful things we can do for each other is check in without pretense. That can look like checking in when we know the other person is struggling or checking in when one of us conquers a fear or celebrates a success.

And even more importantly, #CheckInWithMe trains our minds to recognize the power in asking others for help — it means we’re better understanding our needs, realizing our boundaries, and being aware of when our physical or emotional batteries are running on low.

So today’s #MightyMinute is going to run a little differently. In the comments below, write about what you’re dealing with and after, reply to another Mighty who needs that check-in. We’d love to see the power of reciprocal support (which is something you all do so well!).

#MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #Disability #RareDisease #Autism #Caregiving #Grief #Cancer #Trauma

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Morning Accountability Post 2/26/24

You have a choice to post in the comments:
*Morning blood sugar numbers
*Your wins and/or challenges
*Ask questions

Managing diabetes will be different for each of us, so keep postings and responses respectful and nonjudgmental. We are not healthcare professionals; therefore, always seek medical clearance before making changes to your treatment.

#Diabetes #DiabetesType1 #DiabetesType2 #lada #mody #ChronicIllness #CheckInWithMe #MightyTogether

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TRUE or FALSE: It’s easier for me to advocate for others than for myself.

Our topic for this week’s self-care challenge is self-advocacy!

When talking about advocacy, we’re referring to the skills and understanding to know one’s needs and openly and effectively communicate those needs to others, whether that be for ourselves or on behalf of those around us.

How do you feel about self-advocacy? Do you find it easier to advocate for yourself or for others?

Share with us in the comments below. ⬇️

#MentalHealth #Anxiety #Depression #CheckInWithMe #ChronicPain #ChronicIllness #Autism #Caregiving #Trauma #Grief #Disability #RareDisease #52SmallThings #52SmallThings

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It’s Okay To Grieve Having Chronic Pain

Life moves at a very fast pace. As someone with cerebral palsy and chronic pain, I know that all too well. I try my best to keep up with others because I am determined, but often that means pushing things down—the pain and emotions.

Mostly, my chronic pain is in my hips (near the bursa sac for the more medically-minded people). I have had it for almost seven years now, which feels like a very long time. Because my pain doesn’t really change, I tend to believe that it is pointless to complain. I’ll always have the same thing to say: “I’m hurting.” I try to keep going and ignore how I really feel about what is happening to my body.
You never really get used to chronic pain, regardless of how long you’ve had it. Because it is my new normal, I try to adapt to it. Spoiler alert: In my mind, “adapting” to the pain means trying to pretend it isn’t there. Does that ever work? No.

The pain in my hips is aching at best, debilitating at worst. However, as long as my organs were intact and my joints weren’t wearing down, I told myself I could handle it. My legs have always been the part of my body that I’ve gotten used to not being the way I wish they were. Hip pain is just a very painful reminder of that.
Two weeks ago, though, the fingers on my right hand turned bright red and began to swell. Soon it hurt to bend my fingers. Typing quickly was a struggle. Opening things got harder. Buttoning my uniform shirt made me wince in pain.

I do so much with my hands, and the soon undeniable fact that I was losing functionality made me mad and desperate. I don’t have an answer to why I have chronic hip pain. I couldn’t stand it if I never got an answer for the pain in my hands.

Then I went to my hydrotherapy appointment. Hydrotherapy is a form of swimming therapy that works well because you don’t have to bear as much weight in the water. Everything is looser. I move so much more easily in the water, and as a result I can usually ignore my pain for the time being.
Not that day. I was at a breaking point. My fingers were swollen and aching, I’d had to type and write a lot, and the hip pain that stayed with me was relentless.

“I’m so tired of being in pain all the time,” I admitted in a rare moment of exasperation and utter exhaustion. “It’s really, really hard.”
I shut my mouth, feeling horrible that I was complaining to the person who was trying to help me feel better.
“I’m sorry,” I apologized. “Now I’m complaining to you.”

My PT swam alongside me and said the words I’d needed to hear for years: “Don’t apologize for complaining to me. I need to know if you’re in pain. You can’t bottle that kind of emotion up; it needs to go somewhere. Talk to me, talk to anyone. I don’t understand your pain completely, but I know it’s hard.”

Such relief coursed through me in that moment. I was so tired of saying “I’m fine” when I wasn’t, forcing a smile when I wanted to scream that I wasn’t supposed to feel so old and my legs were betraying me.
I grieve that I have chronic pain. I skipped right over the denial stage; pain like this is hard to deny. I waver between anger, sadness, and acceptance.

Chronic pain is called “chronic” for a reason—it doesn’t go away. So really, I have no other choice but to accept my pain.

Still, I miss the person I was before my leg pain took over, although I don’t remember who she was. Someone who was a lot less irritated, probably. The person I was before could do more, just because I didn’t have so much pain inside me. I miss that girl. I want her back.
I miss walking around and feeling spasticity, but no aches. I miss being able to tell my family that I wasn’t hurting and meaning it. I miss being carefree about a diagnosis. Now I care because I want answers.

I’m angry because I don’t want to be in pain for the rest of my life. I’m sad because of what I’ve missed out on. I am, at least, relieved that I don’t have to bottle this up anymore. It’s okay to grieve having chronic pain. I’ve heard the old adage “You either laugh or you cry”. It is healthy to laugh at times, but it’s okay to cry sometimes, too.

#ChronicPain #Grief #CerebralPalsy #CheckInWithMe

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Apps? Activities? Spending a lot of time in bed

Hi Mighty Friends!

What apps or games or other activities do you do when you have your more symptomatic days?

Some days I have a hard time getting out of bed and moving my head because of migraines
Other times I feel really far away from everything and I have a hard time engaging in the world (literally reaching for my phone and remembering which app I can use with the way my brain feels can be too much).

My dissociation and flashbacks have been creeping up in frequency while I wait for appointments with new people (intake- probably a psychiatrist and a therapist)

So I’m looking for ways other people engage themselves when they are just not doing well.

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

18 reactions 15 comments

What Is Your Favorite Book and Why?

We all have books that we especially relate to and that inspires us. What’s your favorite book and why?

#themightyreaders #CheckInWithMe #selfcare

24 reactions 20 comments