There is so much I love about this and resonate with - I've always said I don't have a chronic illness, but I learned recently that the condition I have (a reproductive issue) is considered a chronic disease. I've also realised - through my own research - that nutrition and stress play a part in this disease, which doctors haven't mentioned to me.
I also love what you said about making money while not working. Due to my autism & ADHD it has been a struggle to hold down a job in the past, but I had to do it to afford to live. At other times I lived off government benefits. For now my husband earns just enough to support both of us while I study. It's something that's not talked about enough for sure.
Both elements of stress and nutrition were dismissed to me. Not at any point did any doctor or neurologist tell me that they hadn’t been trained in such a complex condition nor in nutrition. That really at the root of it, there is no interest. I’ve come to realise too that self doubt must play a massive part in all this, a post I am yet to write in detail on - I have a lot to say on this 😆 it’s definitely more serving than playing the blame game.
I’d love to read a piece you wrote on your experiences of working, generating an income and leaning in to support via other means whether that’s through the government or a loved one. I feel the same that this needs to be talked about.
I appreciate your thoughts & comments and your resonance with the fact that sometimes it is just not feasible to earn a living without making yourself much worse. Like, I could've kept going but for how long? If we're living a life that's unsustainable, that has to come to an end sooner or later.
I am the product of someone that kept going for far too long. The end result for me was incapacity to work or function.
I see now that there was no other way for me to wake up to the seriousness and severity of my illness. However I do not wish this upon others. I believe what happened to me was entirely avoidable. But that the only way is through education, insight and understanding. Not much will change until we have this and at what point are we ready to learn? It’s as complex as is the illness.
Thanks so much for sharing this here for others to be able to access too. Wow, this is some journey. So am I right in reading that your ill health first began to such a detrimental extent following the Covid vaccine?
In my own personal circumstance, it took me a few years to be over 50% well. The year after it rose to 65% (but pain was mild to only moderately high and I could function through a mild relapse I experienced for 3 months. so in no way was this anywhere near as debilitating as all previous years).
Until recent years I have never experienced mild pain in my life, from the age of 18 it had only ever been severe/agony.
this year so far I’ve been well 80-90% well - I’ve never experienced this level of wellness in all my entire adult life.
I’m not sharing this for comparisons sake (something I have to remind myself not to do with others and yet i still do) but to hopefully show you what’s possible and what I believe is coming for you.
Generally I experience 90-95% wellness is my best months which are now the majority. It’s the little blips and episodes that set it back. Adjustment periods I have heard these called my Amy - the tonic.
My vision is full health and vibrant energy and I believe I will get there.
Thanks! I never know how they will land and you know the bother I had with this piece - I even changed the title from what it was to this which rarely happens. Normally I can bosh them out 😆
I sure have☺️ this was the very start of a monumental healing journey. Though I didn’t realise that’s what it was until I read Louise hays “you can heal your life” around a year later. From this point forward (6 years ago), I believed myself to be doing what anyone in my situation would surely be doing. I had no idea then how common my circumstances were for so many of us - and how little we knew/understood about healing.
In respect of deep healing treatment, bodywork has been a major player in my road to recovery. I’ve had it every month for 5 years and plan to continue doing so. (I also trained in it so I could help others).
I’d love to hear more about your healing journey. Do you write about it too? How are you finding it?
That's so nice to hear that you are better. Made me feel stronger. Yes I write about mine. I'm going to do a big recap this week bc a writer here offered to cross promote me ;)
Just been and had a look at this post - I loved this one all about flow. Resisting the flow of life is in part at the root of migraine - when looking at it from an emotional perspective :
There is so much I love about this and resonate with - I've always said I don't have a chronic illness, but I learned recently that the condition I have (a reproductive issue) is considered a chronic disease. I've also realised - through my own research - that nutrition and stress play a part in this disease, which doctors haven't mentioned to me.
I also love what you said about making money while not working. Due to my autism & ADHD it has been a struggle to hold down a job in the past, but I had to do it to afford to live. At other times I lived off government benefits. For now my husband earns just enough to support both of us while I study. It's something that's not talked about enough for sure.
Both elements of stress and nutrition were dismissed to me. Not at any point did any doctor or neurologist tell me that they hadn’t been trained in such a complex condition nor in nutrition. That really at the root of it, there is no interest. I’ve come to realise too that self doubt must play a massive part in all this, a post I am yet to write in detail on - I have a lot to say on this 😆 it’s definitely more serving than playing the blame game.
I’d love to read a piece you wrote on your experiences of working, generating an income and leaning in to support via other means whether that’s through the government or a loved one. I feel the same that this needs to be talked about.
YES! That post is coming 😉 lol
I appreciate your thoughts & comments and your resonance with the fact that sometimes it is just not feasible to earn a living without making yourself much worse. Like, I could've kept going but for how long? If we're living a life that's unsustainable, that has to come to an end sooner or later.
I am the product of someone that kept going for far too long. The end result for me was incapacity to work or function.
I see now that there was no other way for me to wake up to the seriousness and severity of my illness. However I do not wish this upon others. I believe what happened to me was entirely avoidable. But that the only way is through education, insight and understanding. Not much will change until we have this and at what point are we ready to learn? It’s as complex as is the illness.
Same 🙋🏼♀️ I second everything you said.
Here is my journey with similarities after 60 posts https://open.substack.com/pub/awaymessage/p/enter-label-introcheck-in-after-60?r=iunw&utm_medium=ios
Thanks so much for sharing this here for others to be able to access too. Wow, this is some journey. So am I right in reading that your ill health first began to such a detrimental extent following the Covid vaccine?
In my own personal circumstance, it took me a few years to be over 50% well. The year after it rose to 65% (but pain was mild to only moderately high and I could function through a mild relapse I experienced for 3 months. so in no way was this anywhere near as debilitating as all previous years).
Until recent years I have never experienced mild pain in my life, from the age of 18 it had only ever been severe/agony.
this year so far I’ve been well 80-90% well - I’ve never experienced this level of wellness in all my entire adult life.
I’m not sharing this for comparisons sake (something I have to remind myself not to do with others and yet i still do) but to hopefully show you what’s possible and what I believe is coming for you.
Generally I experience 90-95% wellness is my best months which are now the majority. It’s the little blips and episodes that set it back. Adjustment periods I have heard these called my Amy - the tonic.
My vision is full health and vibrant energy and I believe I will get there.
What’s your future self vision?
Love the title! x
Thanks! I never know how they will land and you know the bother I had with this piece - I even changed the title from what it was to this which rarely happens. Normally I can bosh them out 😆
Thank you for your post. Have you found healing? Lately I've tried transcranial stimulation for the same thing
I sure have☺️ this was the very start of a monumental healing journey. Though I didn’t realise that’s what it was until I read Louise hays “you can heal your life” around a year later. From this point forward (6 years ago), I believed myself to be doing what anyone in my situation would surely be doing. I had no idea then how common my circumstances were for so many of us - and how little we knew/understood about healing.
In respect of deep healing treatment, bodywork has been a major player in my road to recovery. I’ve had it every month for 5 years and plan to continue doing so. (I also trained in it so I could help others).
I’d love to hear more about your healing journey. Do you write about it too? How are you finding it?
That's so nice to hear that you are better. Made me feel stronger. Yes I write about mine. I'm going to do a big recap this week bc a writer here offered to cross promote me ;)
Just been and had a look at this post - I loved this one all about flow. Resisting the flow of life is in part at the root of migraine - when looking at it from an emotional perspective :
https://open.substack.com/pub/awaymessage/p/enter-label-how-flow-can-help-us
Please share your link to it here when it comes out so me and other readers can take a look🙏
Will do. Thank you for sharing your space