For friends: Educate yourself, listen, be flexible, check in regularly, include them, be empathetic, respect their needs, and celebrate their strengths. Be a spoon collector, not a fork giver 

Move doctors if you don’t feel one is listening to your concerns

Advocate for yourself if you feel a medication is not reacting well with your body

Don’t get stuck in your hurt because your life is worth living, it's just going to look different 

You matter, you are enough, you are valuable

You need to find your own way for living your best life despite what you are going through

Don’t be afraid to find people and reach out about things they’ve tried or done or helped them to get more ideas

Don’t get stuck morning the life you once had because life is still beautiful .

Website: https://www.bestworstclub.com/  go to Clubhouse tab for a private group space.

Coping strategies: 

Home is my safe place 

Heating pad

Epsom salts and hot bath

Daily cannabis for pain

Sleeping, eating, drink water

Stretch daily

When out of the house bring: portable heating pad, lidocaine patches, vape pen, water.

Planning and preparing for the anxiety from chronic pain

If you ask your doctor to try something (ex: test or treatment) and they say no, ask them to note your request in the chart (it may also change their decision). 

Ask for a copy for your doctor’s notes (sometimes things are written that were not discussed or they may have opinions written like combative patient or undiagnosed mental health conditions (when you are just clarifying as asking questions))

Know you are not alone.  Someone else is going through similar situations.  

Your worth is not wrapped up in your illness

Get involved in the community 

Don’t over do it on your good days!

CHOP Protocol (to get back into working out): ⁠https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf⁠

Colouring sheets

Visualization

Vitassium - ⁠https://thepodiumshop.ca/products/saltstick-vitassium-100-ct⁠ 

Bouy - ⁠https://justaddbuoy.com/⁠

Migraine cap - ⁠https://amzn.to/48X4LBV⁠ and ice roller - ⁠https://amzn.to/3w54w9i⁠ 

Heat eye mask - ⁠https://amzn.to/48YptBm⁠ 

Compression socks/legs - ⁠https://amzn.to/3SH3Ors⁠ 

Use of wheelchair when needed

Not feeling the need to say “sorry” for accommodations

Not finding self-worth in the material things (ex: occupation)

Gratitude journal 

Balancing hope with acceptance

Everything chair to use while cooking, washing dishes, or hair/makeup

Electrolytes 

LMNT - tastes good!!

Liquid IV

Vitassium - capsules and chewables for on the go!!

Protein drinks

Premier protein

Core power protein drink

Find/meet one other person who is going through what you are going through, you are not alone!

Line for procedure anxiety: “Can you please tell me what you are going to do before you touch me”

Have an ongoing note on your phone about questions, thoughts, and concerns so you know what you want to discuss before going in

Support system is helpful if you have it 

Ice packs or heat pads

Meditation - short guided one is helpful before bed 

Journal - to process thoughts

Her dog is good for her mental health

Sunshine and fresh air is helpful 

Therapy 

Stretching

Do enough research to inform yourself BUT don’t fall down the google hole

It is overwhelming and scary but those feelings are relatable for those with chronic illnesses. Feeling anxious, depressed, or angry is okay and normal and you need to work through them to feel a nice life despite the illnesses, it might just look different than what you expected your life was going to look like.

Divide your day in half with a nap in the middle to help with fatigue

Guided meditation and breathwork. 

Light therapy when you first wake up in the morning

Get involved in your own healthcare and speak up when a treatment option makes you uncomfortable

Join chronic pain support groups 

Group therapy with your partner 

Activities: Gardening, Word searches, adult colouring books, going to the library, reading, journalling, bibles study

Social connections are important!

Radical acceptance - “Pain + not acceptance = suffering” “Pain + acceptance = thriving”

Carve out joy and make things interesting in your life

Give yourself grace

Set yourself up for success (doing tasks slightly different to work with your body, rather than against it)

Shannon’s book: Chronic Pain Hacker: Because Healing is Hard https://amzn.to/48oIdt5

Book: The Body Keeps Score https://amzn.to/3NvUpA7

Vagus Nerve exercise book (many different options):  https://amzn.to/3GMIBFT 

Find her links: https://linktr.ee/in16yearsofendo

Finding Peace with a Devastating Disease: https://amzn.to/414mi7M

Podcast recommendation: Endo Thick Of It with Brandon and Kimether https://open.spotify.com/show/1JTUbvgrLCkinzOWDOoYZe?si=982455e816d747b7 

Finding compassion with yourself is a struggle!

Learn to let go of the resentment towards your body, and embrace your body instead!

Learn to process your grief instead of getting stuck in it

What is happiness and what does it mean to you?

Cater to what your body needs with a sense of gentleness and self compassion

Without the tools, the trauma rules! 

Tapping for anxiety 

Stretching 

Going for a walk

Journaling

Lean on the chronic health community/endometriosis online community 

Advice: Keep a copy of everything (even if you can’t understand it) and keep as much information on yourself as you can (ex: track period or pain). 

Phrasing to doctor: Is this something you can help me with or is it something I need to be referred for?

Journaling (aesthetically pleasing journals - links below)

Notebook: https://amzn.to/3MQeyAs 

Pens: https://amzn.to/46gG01e or https://amzn.to/3uvhKer 

Highlighters: https://amzn.to/47Dp7yJ 

Stencil bookmark: https://amzn.to/3urHF76 

Shower when feeling dysregulated - shower chair: https://amzn.to/3R6Ogwo 

Stretches (even just in your bed).

Fresh air (even just on your porch).

Friend and family support.

Join the community of those with chronic health conditions online (social media).

Endo resource: Nancy’s Nook: https://nancysnookendo.com/