Oh thank you🩵 I’ve been trying to work out what my main message is, what the one thing is (is it learning to lead from within?) and I have a few mantras - but I hadn’t ever thought of that as one
Thank you for this essay Amber. Feeding myself with a chronic illness is tricky, so recently I’ve been focussing on eating some vegetables, more vegetables. I’ve mostly abandoned the ‘stop eating X’ story to do this. It is helping. Nutrition is important. So is knowing there are days when I am so tired or in so much pain, eating anything is a miracle. What ‘regular’ people may miss, is how much work it is to keep my eye on this ball. I recently began paying a university student to do shopping & errands for me, so I have more energy available to prepare food, and so I don’t spend all my carer hours on shopping and errands! I’m in a period of needing more rest, and feeling a lot of external messages about what I do all day so I’m glad to be reminded of this essay via your Ladies Illness Library interview with Rachel Katz. Thank you.
Nutrition is important, but like you say, so is understanding how you are feeling and what is going on for you. We don’t have to get it perfect or do everything right. Not even at any time, never mind all the time.
I love that you pay a student to lighten your load!!
The messages really are crazy. I was literally dumbfounded when people would ask me what i did all day when I was physically no longer able to drag myself to work (and drag myself was what I had been doing in the years to no longer physically being able to).
It took me 4 years to be able to answer what it was that I was really doing all day and why. Up until this point it felt like a 24/7 job. Over the 4 year mark something flipped and it suddenly all became a way of life.
Can’t wait to read it, I’ll come back to that! And thanks for sharing it in here so other readers can see it too 🙏 great to connect with you today, I was so nervous about posting on that note because I appreciate what a highly emotive and triggering topic discussing disability can be.
Thank you! - I'm glad to have found your Substack, you have such insightful thoughts about topics that aren't talked about in conventional medicine/life :)
It’s not that we need to dismiss conventional al medicine/life (I probably did feel like that at one time because of all the medical trauma inflicted) but we do need to compliment it. Identity it’s strengths and bring about a sense of balance with it.
I strongly believe that sharing our stories will lead to the greatest change in the longer term.
Yes, I prefer to think of it as ‘complimentary medicine’ as opposed to ‘alternative medicine’. I've recently started seeing a chiropractor and that's helping me too.
Teeny tiny changes sounds like it could be a mantra for all those that are struggling to find the hope Amber and you are the inspiration for that xx
Oh thank you🩵 I’ve been trying to work out what my main message is, what the one thing is (is it learning to lead from within?) and I have a few mantras - but I hadn’t ever thought of that as one
Mmm, teeny tiny changes that blossom hope like the opening of a flower feels good. 💫🙏
Yes absolutely this!
A wonderful post, you are inspiring me this week x
So glad to hear you are feeling inspired 😍
Thank you for this essay Amber. Feeding myself with a chronic illness is tricky, so recently I’ve been focussing on eating some vegetables, more vegetables. I’ve mostly abandoned the ‘stop eating X’ story to do this. It is helping. Nutrition is important. So is knowing there are days when I am so tired or in so much pain, eating anything is a miracle. What ‘regular’ people may miss, is how much work it is to keep my eye on this ball. I recently began paying a university student to do shopping & errands for me, so I have more energy available to prepare food, and so I don’t spend all my carer hours on shopping and errands! I’m in a period of needing more rest, and feeling a lot of external messages about what I do all day so I’m glad to be reminded of this essay via your Ladies Illness Library interview with Rachel Katz. Thank you.
Nutrition is important, but like you say, so is understanding how you are feeling and what is going on for you. We don’t have to get it perfect or do everything right. Not even at any time, never mind all the time.
I love that you pay a student to lighten your load!!
The messages really are crazy. I was literally dumbfounded when people would ask me what i did all day when I was physically no longer able to drag myself to work (and drag myself was what I had been doing in the years to no longer physically being able to).
It took me 4 years to be able to answer what it was that I was really doing all day and why. Up until this point it felt like a 24/7 job. Over the 4 year mark something flipped and it suddenly all became a way of life.
I’m heading into year 3 so that helps because honestly I’ve been feeling a slump.
Great post Amber. You are a true warrior xx
Thank you so much 🙏
I appreciate your taking the time to read my blog & post too 😘😘
Wow, I can't tell you how much I love this. I've never read another post like it, it's great. People just don't talk about this stuff in this way. I wrote some of my burnout story here: https://neurodivergentnotes.substack.com/p/finding-hope-and-beauty-in-the-fallow and my recovery journey here: https://neurodivergentnotes.substack.com/p/how-i-knew-i-was-recovering-from
Can’t wait to read it, I’ll come back to that! And thanks for sharing it in here so other readers can see it too 🙏 great to connect with you today, I was so nervous about posting on that note because I appreciate what a highly emotive and triggering topic discussing disability can be.
Thank you! - I'm glad to have found your Substack, you have such insightful thoughts about topics that aren't talked about in conventional medicine/life :)
It’s not that we need to dismiss conventional al medicine/life (I probably did feel like that at one time because of all the medical trauma inflicted) but we do need to compliment it. Identity it’s strengths and bring about a sense of balance with it.
I strongly believe that sharing our stories will lead to the greatest change in the longer term.
Yes, I prefer to think of it as ‘complimentary medicine’ as opposed to ‘alternative medicine’. I've recently started seeing a chiropractor and that's helping me too.
🥲 thanks for your feedback, it’s really helpful to have so I know what hits the mark 🙏💙😘 I plan to share blogs most Sunday evenings x