chronically-mars

[chronically-mars]

Good morning everyone!

Today is Black Friday and while Black Friday isn’t as big of a thing as it used to be, from now until the end of the holiday season PLEASE be kind to your retail workers. As someone who still goes into work with my chronic pain at a level 10+, I you never know what someone is going through when they go into work that day. Please be patient and kind to workers this holiday season.

To all my spoonie friends who are retail workers for the holiday season, I wish you the best of luck and I am sending everyone spoons 🥄

[chronically-mars]

Right?! I was told “why didn’t you say anything before?” I didn’t know people just weren’t in pain all the time?? I told them how debilitating my joint pain was to stand for more than 30 minutes and they told me that’s NOT normal and I was shocked. When I was told there is no normal amount of pain, if you’re in pain that’s not okay- I was shocked!

I don’t know who needs to hear this but I know I needed it 2 years ago

You should not be in debilitating pain to the point you cannot move after only 4 hours of activity. (This is counting taking regular breaks)

I thought everyone was extremely tired the next day where they couldn’t even move their joints properly the next day.

If you feel this way, I promise your pain is valid and you have every right to ask to ask for help and use aids that can help you day to day even if you are undiagnosed.

I just felt like someone needed to hear this today and to remind everyone your pain is valid!

[chronically-mars]

I thought this too! I’ve had chronic pain since I was 9 y/o and I thought everyone experienced daily pain in their joints. It took me not being able to get out of my chair to get diagnosed. If you feel like this is affecting your day to day and you’re able to get access to a doctor I highly encourage you to! 🫶🏼 just know you have every right to ask for help and I’m happy to be that support to anyone trying to get answers

I don’t know who needs to hear this but I know I needed it 2 years ago

You should not be in debilitating pain to the point you cannot move after only 4 hours of activity. (This is counting taking regular breaks)

I thought everyone was extremely tired the next day where they couldn’t even move their joints properly the next day.

If you feel this way, I promise your pain is valid and you have every right to ask to ask for help and use aids that can help you day to day even if you are undiagnosed.

I just felt like someone needed to hear this today and to remind everyone your pain is valid!

[chronically-mars]

I don’t know who needs to hear this but I know I needed it 2 years ago

You should not be in debilitating pain to the point you cannot move after only 4 hours of activity. (This is counting taking regular breaks)

I thought everyone was extremely tired the next day where they couldn’t even move their joints properly the next day.

If you feel this way, I promise your pain is valid and you have every right to ask to ask for help and use aids that can help you day to day even if you are undiagnosed.

I just felt like someone needed to hear this today and to remind everyone your pain is valid!

[chronically-mars]

This is very important...

[chronically-mars]

“Did you drink water today?” “Did you take your meds today?”

These are simple questions but they fill my heart with joy- because you’re telling me you care about me?? You care enough to remember to ask me those questions?

“Let me check if they’re accessible”

This is the ultimate I love you to me. You putting in the effort to include me in a way that doesn’t cause me so much pain or takes stress off my body.

[chronically-mars]

I hate being unreliable as a chronically ill and disabled person.

I hate that I never know when my disability will get so bad it prevents me from working and that’s terrifying for me to think about. Especially when so many people count on me.

Sometimes it scares me that I’m so young but it’s so hard to work with my health conditions sometimes, as is I never rest because resting while being chronically ill isn’t resting, it’s pain/symptom prevention.

PLEASE support your chronically ill and disabled loved ones. They’re trying their hardest to be reliable and to finish everything that needs to get done but there will be days where we simply can’t.

[chronically-mars]

I hate the price I pay for having fun as someone with chronic pain.

Today my job had a Halloween event and I worked today. I had so much fun dressing up, giving out candy, goofing off with my friends. Now my body is paying the price for it.

I hate that when my friends ask if I want to hang out with them that I have to tell them no even if I’m feeling good because I know it’ll put me out of commission for days. Now I’m in bed, my body throbbing in pain, unable to move because I just wanted to have some fun as a young adult.

[chronically-mars]

Dynamic Disabilities are so frustrating.

People think “it’s not that bad! You have some bad days what’s the big deal? Aren’t you used to it by now?”

No, it’s the constant flip flopping of pain and never knowing when it’ll get bad that you will never get used to.

There are days I forget I even have pain because it’s so low only for the next day my body crashes and I can’t get out of bed because I overdid it.

It’s the not making plans in fear that you’ll have to cancel them because the pain is too much even though you were fine 20 minutes ago.

It’s the fear of using mobility aids because if you don’t use them often, you’re faking it. But if you don’t use them at all, you’re fine and you’re being dramatic.

So I beg you, please don’t say this to your loved ones who have a dynamic disability. Instead ask how you can help. If they’re insecure about using aids give them reassurance. If they need to cancel last minute make sure to let them know it’s okay and check up on them after you’re done. Dynamic disability causes really bad imposter syndrome, especially for me.

[chronically-mars]

If I’m dreading going to go to my doctors appointment because:

I’m afraid I won’t be believed when I say I’m in pain. Get told “You’re too young to be in pain! Wait until you’re my age”. Told I’m too young to have arthritis so it can’t be that. Afraid of my doctor saying that I’m “exaggerating” my symptoms. That I should try doing X,Y,and Z before getting an aid or help. That it’ll be written off as anxiety. That I should lose weight. That I should try to exercise more. That I will be dismissed because my labs came back fine.

Then something has to change. It’s not just one doctor, it’s multiple. I should not feel like giving up on getting a diagnosis is easier than getting help, WHEN I WAS 14.

———

For my spoonie’s, here are some extra spoons for you today: 🥄🥄🥄🥄

[chronically-mars]

Any other dynamically disabled people feel this like,, pressure to get better?

I go to my doctor next week and I have to tell them I still feel like shit every day, but I have such an urge to lie because I feel like I should be better by now. I’m on all the medications, my bloodwork is perfect, there’s not even any disease activity on my labs. But I still feel like shit.

I almost feel this sense of guilt, or like I’m “milking it”, or exaggerating my condition. I get so scared my doctor will think the same.

[chronically-mars]

So I get told I was either faking it or I was just exaggerating when I put effort in to dress up and look nice because I have to look presentable even though I’m in excruciating pain.

But I also get told I’m just looking for sympathy and attention and I should put more effort into my appearance when I actually dress how I’m feeling because it makes you uncomfortable you actually have to acknowledge I’m not doing okay?

Got it.

[chronically-mars]

What electrolyte drink has worked for you guys?

My list:

Liquid IV - 6/10

Gatorlyte / Gatorlyte zero - 9/10

Wishlist:

Buoy drops

Body Armor

LMNT

[chronically-mars]

You. Are. Not. Lazy. For. RESTING. This is as much as a reminder for you guys as it is for me.

From elementary school to my last years of high school I was an overachiever, I over worked myself to be the best student. Academic success is something I craved because it validated my hard work. After my disability forced me to stop everything I felt lazy. I felt like I wasn’t doing enough, my grades started slipping, I needed to take more breaks than normal and I felt guilty, and it’s still something I struggle with as an adult. Taking a break to prevent burnout and flares is not lazy or procrastination, it’s self care.

To all of my friends in the chronic community in school, please take care of yourself. Don’t overwork or push yourself into a flare to get stuff done. Communicate with your teachers, find a support system if you can at school so they can help you. I wish everyone the best in your academic journey no matter where you are.

[chronically-mars]

Friend: what caused your flare up today?

Me:

- period is starting

- weather changing

- rain

- too cold

- too hot

- standing for too long

- sitting too much

- not drinking enough water

- being too active

Also me: honestly I have no idea

[chronically-mars]

Masking chronic pain sucks.

It doesn’t mean we’re not in pain, it doesn’t mean we can do stuff just because we did it yesterday, it means we are trying not to make you uncomfortable when we’re in the most severe pain imaginable but have to put on a straight face or else we will break down completely. Masking takes up energy we don’t have so please be nice to anyone who is struggling.

To my chronic community friends, I hope you get to rest today and I hope you get more spoons to get you through the week. You are valid.

[chronically-mars]

Here’s your daily reminder to my disabled and or chronically ill friends:

Be proud of yourself today. Living with this everyday isn’t easy and even the smallest things count. Got through a full day of work? Amazing! Got 3 chores checked off the list? Amazing! Took a shower today? Amazing! Got out of bed? Amazing!!!

I know it seems like this isn’t enough, especially if you’re still grieving your past life where you were more active. But you should still be proud of yourself for everything you have accomplished even when you feel defeated