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To my loving friends & family,
I will always be sick. Thats what the chronic part of chronic migraine means: all the time. Which is for me a severe headache, nausea, feeling shaky, dizziness, blurred vision, light and odor sensitivity and heat intolerance. Sometimes it's a 6/10 of pain, sometimes it's a 9/l0. It may not look like I have a migraine, but it's always there. I can try to be out and about if the migraine is anywhere from 4/10 to about a 7/10 (I have not dropped below 4/10 for three years). But I have to rest right after. I don't have any less migraine when I'm out, I just might need some extra meds or support. That is pushing myself to get out an have a life, which helps me feel slightly normal, and maybe even happy. I may even need extra rest when I brush my teeth, wash my hair, shower, clean, or cook. Everything is all so exhausting.
I also have extremely bad depression. My antidepressant and therapist are helping, but there are some days it keeps me in bed, and somedays I feel like swallowing a handful of pills just to get away from it or because the migraine pain/nausea is so bad. I want to be independent in the worst way possible. And I'm trying to do what's best for me to get there.
As much as I can appreciate your good intentions, I got this one. I don't need you to have to research therapies for me, I don't need you to make suggestions or give opinions - trust me I've heard it all. Please don't tell me not to drink, not to eat something, or to get more exercise. Some of those things might work for me, and some may not. Not everything works for one person. I formulated a plan with doctors and therapists who I trust. This plan is specific, so it works for me. Trust me on this. I have a degree in nursing, so I am very able to keep to my care plan and advocate for myself.
What I need the absolute most from family and friends is for you to be there for me, ask me what I need, understand that certain things can make me feel worse (STRESS, HEAT, LIGHT, NOXIOUS smells), and celebrate when things go right. I want you to be there with me just watching Harry Potter movies or whatever at my parent's house when I'm curled up in a ball and can't move because the pain or nausea is so bad. Or even when the pain is a bit better but I'm too tired to do anything, please help me take care of Ruby, grab some ice packs, tea, or La Croix for me, and I always welcome a good home cooked meal. Just be there.
I have had given up so much of my life and freedom because of migraine and depression. I had to quit my nursing career and move in with my parents. These illnesses have taken a husband, kids, jobs, friends, family, and most of my independence. I hope and pray that none of you ever have to go through this.
Just know that I have a tiny spark
that burns deep inside my belly, and soon that fire will become stronger and stronger. I may never truly beat migraine, but I will get better, get stronger and make a life for myself that is even greater than I have imagined!
Thank you for your love and support!
Love, me. ❤
*I wrote this letter in first person, using my point of view. My hope is that you can show this to you friends or family, and get a discussion going on how they can best help you.
Thank you both! I hope that it helps others to understand us spoonies a bit more! ❤💜❤
Thank you Kate! This is so well written and definitely has some helpful words. It is similar to a letter that I have from many years ago, written for Fibromyalgia, called Letter to Normals. Have a blessed day! Deb
Beautiful letter to family and friends, Kate. That is a very helpful note for others to use. Sometimes the words are so hard to find. Love you 💜❤️💜 Jennifer