Great post with lots to chew on, Amber. I would describe fatigue as feeling like your whole being has a block of concrete tethered to it. Yikes, 13 words!
What have I been meaning to do but haven’t gotten to? I have my toe dipped in several things right now and each day I assess my available energy, after chores and exercises are done, to get a little bit done on one of the “things”. As a result, I’m making progress on all of them, albeit slowly. I am learning to reside in this space, after decades of destructive perfectionism and achievement. It’s a bizarre feeling and sometimes I get pulled back toward my old ways, but I work at resisting.
Did I ever tell you that my ME/CFS doc once asked if I had a history of chronic migraines (yes) and endometriosis (also yes), because indeed there is some connection? Your mention of the conference reminded me of this.
Wow, I didn’t know that about your ME/CFE doc asking that. In my daily nature walk I was pondering “so, what is the connection, what was their point?” (Linked to the title) and it was that 2/3 of chronic migraine patients have chronic fatigue also but that only 1/3 of chronic fatigue patients ever receive proper diagnosis. I am really glad I didn’t waste my time beyond informing one neurologist I had it. One medical diagnosis was enough for me to take back the reigns of creation for my own health.
I can relate so much to letting your body lead the way of following baby steps. I still live my life that way now, even though I am as well as I am. Slowing down was up there with the hardest things I’ve ever had to do. I felt physically sick when I shared this part of my journey on Instagram the other year.
That’s a great analogy with the concrete! I started telling (anyone who would listen) that describing a full body (migraine) attack as a headache is akin to smashing someone from head to toe with a breezeblock and telling them that all they have is a scratch. I used to be terrible with analogies but now I have a few good ones😆
Oh god, yes. Day one of a migraine is like someone beat the shit out of your whole body but focused on your heart. Days 2-3 are like a full body hangover.
For me, each attack used to last over a week (peaking at 8 a month all overlapping, rendering me disabled). For years, the hangover left me feeling like my head had been beat up all around the inside and as if my stomach had been ripped out. Then factor in the chronic fatigue, fibro, etc. How are we still even alive when living like that?!
How we’ve come to build systems where the expectation is for us to stay like that and to put up and shut up, I’ll never know.
Right?? For me, mine usually started around 2-3pm most days. Did I leave work early? Nope. Take many sick days? Nope. Did I buy TheraSpecs so I could drive 40-60 minutes home “safely” with my blinding migraine? You bet I did. It definitely amazes me now how much I ignored my body and pushed and pushed during those 8 years of near daily migraines. The me of today would never stand for it!
Oh my gosh I can so relate! It never occurred to me that outside of doing what I thought you were supposed to do (tell the doctor), I told no one. I suffered in agonising silence for 20 years - powered on, pushed through, shut up and put up. I’m so proud of who I’ve become. Super proud of you too - I know the mountain climb that this is. And there’s often no one to celebrate the views with you xx
I love how you describe previously drowning in the loud symptoms to living with (mostly) quiet symptoms. When you share with me your approach to endo research combined with where you are now, it makes me think about all you’ve got to share and offer others in the community. They would really benefit from what you’ve learned. It’s a real skill and talent to be able to understand such a complex disease and meet the needs your body has in a minefield of contradictory information.
When you ask your body what it needs, what does it respond with? My body is screaming out for rest and sleep 😴 To slow down and just be.
What research into your condition have you found beneficial? How has this improved your health/ability to advocate? I went deep dive into my condition and it’s taken me from drowning in very loud symptoms to living most of the time with very quite symptoms. It’s been huge in my journey. I consider myself a mini expert on endo.
Do you believe there is an easier way to live and be? Big questions and conversations coming up in our house, you channeled big changes from my body, by our chats I can feel them coming!
Freedom, sustainability and balance are my 3 main values. What are your top 3 values? I have no idea and I need to ponder it. Being environmentally conscious is one, this fits in to both my health and the world around me (no chemicals, natural products at home, recycling, trying to buy organic more, buying local, trying to eat local produce…).
Using ten words or so, how would you describe fatigue? Fatigue is a tiredness that doesn’t lift with rest or sleep. (11 does that count? Haha).
What have you been meaning to get round to for ages but still haven’t had a go at? I’ve a list as long as my arm, but rest has taken priority.
Great post with lots to chew on, Amber. I would describe fatigue as feeling like your whole being has a block of concrete tethered to it. Yikes, 13 words!
What have I been meaning to do but haven’t gotten to? I have my toe dipped in several things right now and each day I assess my available energy, after chores and exercises are done, to get a little bit done on one of the “things”. As a result, I’m making progress on all of them, albeit slowly. I am learning to reside in this space, after decades of destructive perfectionism and achievement. It’s a bizarre feeling and sometimes I get pulled back toward my old ways, but I work at resisting.
Did I ever tell you that my ME/CFS doc once asked if I had a history of chronic migraines (yes) and endometriosis (also yes), because indeed there is some connection? Your mention of the conference reminded me of this.
Wow, I didn’t know that about your ME/CFE doc asking that. In my daily nature walk I was pondering “so, what is the connection, what was their point?” (Linked to the title) and it was that 2/3 of chronic migraine patients have chronic fatigue also but that only 1/3 of chronic fatigue patients ever receive proper diagnosis. I am really glad I didn’t waste my time beyond informing one neurologist I had it. One medical diagnosis was enough for me to take back the reigns of creation for my own health.
I can relate so much to letting your body lead the way of following baby steps. I still live my life that way now, even though I am as well as I am. Slowing down was up there with the hardest things I’ve ever had to do. I felt physically sick when I shared this part of my journey on Instagram the other year.
That’s a great analogy with the concrete! I started telling (anyone who would listen) that describing a full body (migraine) attack as a headache is akin to smashing someone from head to toe with a breezeblock and telling them that all they have is a scratch. I used to be terrible with analogies but now I have a few good ones😆
Oh god, yes. Day one of a migraine is like someone beat the shit out of your whole body but focused on your heart. Days 2-3 are like a full body hangover.
*head (not heart) 🤦🏼♀️
I did wonder 😆
For me, each attack used to last over a week (peaking at 8 a month all overlapping, rendering me disabled). For years, the hangover left me feeling like my head had been beat up all around the inside and as if my stomach had been ripped out. Then factor in the chronic fatigue, fibro, etc. How are we still even alive when living like that?!
How we’ve come to build systems where the expectation is for us to stay like that and to put up and shut up, I’ll never know.
Right?? For me, mine usually started around 2-3pm most days. Did I leave work early? Nope. Take many sick days? Nope. Did I buy TheraSpecs so I could drive 40-60 minutes home “safely” with my blinding migraine? You bet I did. It definitely amazes me now how much I ignored my body and pushed and pushed during those 8 years of near daily migraines. The me of today would never stand for it!
Oh my gosh I can so relate! It never occurred to me that outside of doing what I thought you were supposed to do (tell the doctor), I told no one. I suffered in agonising silence for 20 years - powered on, pushed through, shut up and put up. I’m so proud of who I’ve become. Super proud of you too - I know the mountain climb that this is. And there’s often no one to celebrate the views with you xx
I love how you describe previously drowning in the loud symptoms to living with (mostly) quiet symptoms. When you share with me your approach to endo research combined with where you are now, it makes me think about all you’ve got to share and offer others in the community. They would really benefit from what you’ve learned. It’s a real skill and talent to be able to understand such a complex disease and meet the needs your body has in a minefield of contradictory information.
Great point about fatigue!
When you ask your body what it needs, what does it respond with? My body is screaming out for rest and sleep 😴 To slow down and just be.
What research into your condition have you found beneficial? How has this improved your health/ability to advocate? I went deep dive into my condition and it’s taken me from drowning in very loud symptoms to living most of the time with very quite symptoms. It’s been huge in my journey. I consider myself a mini expert on endo.
Do you believe there is an easier way to live and be? Big questions and conversations coming up in our house, you channeled big changes from my body, by our chats I can feel them coming!
Freedom, sustainability and balance are my 3 main values. What are your top 3 values? I have no idea and I need to ponder it. Being environmentally conscious is one, this fits in to both my health and the world around me (no chemicals, natural products at home, recycling, trying to buy organic more, buying local, trying to eat local produce…).
Using ten words or so, how would you describe fatigue? Fatigue is a tiredness that doesn’t lift with rest or sleep. (11 does that count? Haha).
What have you been meaning to get round to for ages but still haven’t had a go at? I’ve a list as long as my arm, but rest has taken priority.