dearchronicme

[dearchronicme]

ChronicAlly Prompt #2

What gives me hope right now—even if it’s small or fleeting?

[dearchronicme]

ChronicAlly prompt Monday!

What are some coping strategies you can use during flare-ups and high-pain or high-fatigue days? Are there any comfort items, friends, or resources you can also use as support? List them out, and refer back as needed! 🩵

[dearchronicme]

Hello there, could I get some advice? I don't have a diagnosis, but I struggle with a condition that adds huge mental roadblocks to my daily life, probably executive dysfunction as a few friends have guessed. In any case, despite my efforts to make all the things I have to do in a day easiest for me as possible, I've found that vacuuming remains a big mental thing for me. I may be able to get my hands on a robot vacuum, but not for a while.

Do you have any tips on how to break up the task or be more lenient with it? I've moved the vacuum closer to the outlet, and the area I live in is small, but it's not really the physical activity that makes it such a struggle, its not being able to be flexible.

Absolutely! So first things first, you may not be diagnosed, but you are still identifying an area of struggle, that is very good.

1.) Don’t think too hard

I also hate vacuuming, however, some things I like to do is not think about it until I’m already up and moving, and then kind of put your brain on autopilot (like you’re completing a task in a game), and vacuum as much as you can (safely). It’s a good way to not dread the task and then lose the momentum you may be trying to build or preserve.

2.) Timers

You can also set timers! Sometimes I’ll set a timer for 20 minutes, put in my earbuds, and just do that task until I hear the timer go off!

3.) Task Approximation/Analysis

Prepping tasks can also be helpful! Like you have already moved the vacuum closer (love that), now try and start with maybe just vacuuming a part of a room or even a rug! Set it up to be very minimal tasks that your brain is like “oh I can definitely do that!” This is called Task approximations or analysis.

4.) Reward system/Chart for success

You can also always reward those tasks after, maybe on days designated to vacuum, you go and get a treat or you get to watch your favorite show! It can be helpful (and fun) to even reinforce these behaviors with a sticker chart sometimes.

Remind yourself that if you can only do so much of a task today, that it is okay. Nothing is really going to be impacted by the fact you cannot vacuum an entire living space, so practicing that self talk and acceptance of the situation can help too.🩵

[dearchronicme]

🇺🇸Reminder if you’re in America for July Fourth!!🇺🇸

If you have POTs or MCAS, and you choose to drink or smoke (or partake in anything) Please stay hydrated!

And no, not your average hydrated for club nights or trying to beat a hangover.

Like literally space out your drinks with electrolytes if you can, have salty food, and compression available, especially with the summer heat.

🥂TLDR; Some chronic illnesses react very negatively to alcohol and other substances, so if you can, stick with only one, and monitor those symptoms, you likely will feel it the next day.

Stay safe and be mindful of your body, and have some fun!

[dearchronicme]

This Mast Cell Tracker has helped me a ton! It may also be able to help with other dietary restrictions as well! 💙

[dearchronicme]

Good morning! You’re doing good today, don’t forget it! For being where you were, you’re fucking nailing it! Be gentle with yourself and patient, know that you’re doing awesome💙

[dearchronicme]

I used up my spoons too early today😓. Like PT and showering should not be the challenges of the day😂

[dearchronicme]

So you were diagnosed! What should you have in your go bag? A master list

Electrolytes: I cannnot stress the importance of this. Even if you don’t have POTS or dysautonomia, it’s always good to replenish your levels of sodium. Liquid IV is affordable, but also has added sugars. I use LMNT, and Nuun Mostly, all of these should be available at Target or your closest pharmacy!

Medical Card/ID: When I experience an episode, I often lose the ability to hear and speak. Having a card that has that information can be extremely helpful, especially if you are about to faint.

Fomatadine: Good for MCAS and GI issues

Pain Reliever: Aspirin is the most popular as it’s compounds can have anti-inflammatory properties, that may help with other symptoms but Ibprofen and Acetaminophen will work just fine!

Face Cooling Stick: Found at five below, and can also be found on Amazon! Works so well

Salt Packets: In case you need some sodium in a pinch

Pulse Oxometer: to check your pulse or have others do it if you faint.

Blood Pressure Cuff: helps keep track of BP and what else is going on when you’re experiencing a flare

Zyrtec: Best for Allergy Management or Histamine intolerance. Literally what they give you at the ER for an Allergic reaction

Benadryl: Controversial as it has been linked to studies of dementia. However, always good in case you need it in a cinch

Cool Pack/Heat Pack: have both just in case. Can’t express how much it has saved me.

Gum/Tic-Tacs: Keeps your breath fresh especially after the occasional vomit episode.

Medical ID/tag: if you have one, keep i5 on your med bag.

Emesis bags: just in case you have to throw up

Dramamine: motion sickness

Zophran: best of the best. Has really helped nausea, you do need a rx though

Ginger Gum/chews: helps with nausea

Hand towels/tissues: my palms often get sweaty, so it’s good to have something just in case

Alcohol wipes: Good for if you need to do a finger prick, or just want to be extra clean

Hand Sanitizer: again, good for clean hands, especially when traveling

Portable fan: great for cooling off or when you experience a hot flash

[dearchronicme]

Hiya! Welcome to my blog!

I am your Chronically-ill fairy godmother. Keeper of life hacks, symptom management, and resources! Send me questions or comments and I will address them as quickly as I can! Please remember, I am only a peer, and if you need medical or professional opinions, please reach out to your actual doctors!

A little about me!

I’m a twenty something student in the U.S, who was recently diagnosed with Dysautonomia, Ehlers-Danlos Hypermobile type, and Mast-Cell Activation Syndrome. I was diagnosed informally five years ago, but received official diagnoses after January of this year. I work in counseling and hope to eventually help those in the community around me.

I love my cat, traveling, and herbal tea. Sometimes I paint too! 🖌️🐱

As someone who has faced the diagnosis process alone, I realized how hard finding resources was, and wanted to make it feel a little less lonely for others. So please never hesitate to reach out in DMS or Asks, I will always lend an ear💙

Tags:

This is where you will find a list of tags I use for asks, tips, and resources.

Dear Chronic me: Reassurance for Chronic illness

Ask the Ache: Q&A, where you can ask about resources, or advice!

Potsie positivity: positive vibes for when you need something to brighten your day!

Spoonie support line: Energy balancing and maintenance

Resources: Self Explanatory

Foodies: When you need some chronic illness friendly foods/recipes. Send in your own too!

ChronicAlly prompts: journaling prompts to keep up and help you learn more about what works and what doesn’t! Released every other Monday.

Pain unmasked: providing item lists and recommendations/ratings of items

Venting Veil: In case you need to commiserate, or vent about your feelings

Keeping up with crash: announcements and updates about the blog/more personal info about moi!

Anywho! That’s all for now! I hope you enjoy this compilation of resources I slowly horse and accumulate in my years of sick!