Lovely, Emma and in my mind a metaphor for life...we take what we get, hopefully with a measure of grace tho being only human sometimes not, being mindful of how we effect our beloveds, and holding responsibility for our own selves.
Great to hear you're feeling well Emma. This piece resonates a lot with my own journey with autoimmune disease. It's so tempting to push it in the windows of wellness and then crash all over again. I think I did this last year and have paid the price by being in hibernation for the last 3 months, all through the New Zealand summer. Learning to rest sufficiently BEFORE I hit the wall is an ongoing process of calibration....
Isn't it just - it's almost impossible because the 'well' feeling is so joyous, and we want to live again like we used to. An ongoing process of calibration is exactly right!! So many of us experience this, I hope you are coming out of your hibernation now. Much love x
This got me right in the feels. My other half has Crohn’s and it can be, at different times, heartbreaking and frustrating. The fatigue can get him badly sometimes and I feel like the most awful person when he’s full of energy, looking at all the fun things we can do and I have to be the bad cop and temper things, so he doesn’t crash for days afterwards.
Chronic conditions suck. My heart goes out to you. And your family. The mental side of it is awful too. And the perception of others who don’t really understand what’s causing it. It’s just rough. So I’m glad to hear you’re feeling good and long may it continue. The thing I’ve learned from my partner is to rest even when you don’t feel you need to. We now don’t go on holiday without building in specific rest days where we can read or just be alone and quiet. It’s worth it.
Oh Karen thank you SO much for giving this perspective. My brother had Crohn's so I grew up with it in my household but as a younger sibling, so not really able to feel that impact of the 'carer'. What you say is so true, and I know my husband would whole-heartedly agree with this perspective - particularly about resting even when I don't feel I need to. Wise words indeed! It is so easy to forget to do that when you feel 'well' and are chomping at the bit to live to the full, but it's all about sustaining it. Sending you much love x
Absolutely. We had this discussion right after I posted that comment actually! He gets proper shiny object syndrome so sometimes I feel like a proper Scrooge saying no we probably should think carefully. It’s hard to have to make those decisions but it works out for the best I think and he is better at hearing me.
I suppose it’s knowing when to slow down and when to plough full steam ahead and sod the consequences 😂 x
Totally. And sometimes it’s ok to make the decision to steam ahead, accepting that there will be consequences…it’s just realising the consequences aren’t just for us, they impact our families too… and yes…shiny object syndrome…I suffer terribly with that 🤣💕
Such an honest piece and I can resonate with that total desire to feel normal, to feel well. During treatment, there was one day where the body aches were too much and I got mad with myself and thought I need to distract, so I took myself out in a walk with the dog, on a cold windy day, and boy did I pay for it later, I felt so much worse and it was a total lesson to me to sometimes you have to go to bed and give in, and for me that mental battle was so much harder than the physical one.
I’m so glad you are feeling well, and long may it continue, but also look after yourself, but I know you know that ❤️
Thank you darling, and yes God knows you know how it is. Sometimes the mental benefit and pull to get outside and do ‘stuff’ is overwhelming, and sometimes it’s worth the consequences, it’s just rubbish to have to make that choice. Long may we both stay well ❤️
Damn you Emma Simpson and your truth telling 😘 I needed to read this and didn’t want to read this... also you made me cry. Thank you for writing and sharing this.
Your first sentence made me laugh out loud in the first instance, and then want to give you the most massive hug in the world. It's a tricky path, but we walk it together. Sending much love x
Great piece, Emma. I’m so pleased for you that you are feeling well. Long may that continue 🧡
Your awareness of others around you is surely a great sign that you have the headspace to be aware? I don’t know if that makes sense (it did in my head!).
That makes perfect sense!! Yes - that's so true. When I'm in the thick of it, I can't think further than my own immediate situation which can make it feel very 'selfish' - in the literal sense. I think the wider perceptions do come with the increased capacity of being well, so that's definitely a win! x
Emma, thank you for your 360 degree observations, which are honest and fragile, the waiting in the wings for everything to change in a heartbeat, for you and your family.
When people bravely open up and reveal their vulnerability, there’s a connection created, a line to follow, understand more, even a lifeline for others to hope for better days.
There are so many ways a person can be in need of care and then the ripples rock the boats around them, families, work colleagues and friendships adjust and shift a bit, leaving an impression or sometimes a fracture. Caring is tiring too. The idea that you can try to protect your love ones from the impact of illness throws you into a further state of feeling you failed to do this too… what you’ve written is brave and honest. Do take care of you.
Thank you so much for your lovely comments. It is that feeling of failure to protect that can be so devastating, and the unpredictability for everyone. I guess that's why I try and embrace the stable times to the fullest when they come, but it is such a delicate balance to make sure it doesn't tip back again! Much love x
So much resonates! Raising awareness for the impact chronic illness has on others has been a big topic that’s been at the back of my mind for years. It’s not so much talked about and it needs to be.
“To be knackered in a normal way, instead of debilitated. To feel pain in response to logical occurrences instead of just randomly.” I hear this. Finding myself in a similar space at the moment. Though I’ve never experienced the level of wellness I do now. Last night I wrote a blog answering the question “what does effective rest mean to me?” It’s an interesting prompt to sit with. Wildly different to what effective rest used to mean to me back in ‘those days’. But something I must sit with and give space to so that I still incorporate sufficient rest into my days/week/months to enable me to continue to live well from within.
It's not much talked about at all is it, and I know you and I are both in similar periods of wellness which is AMAZING, but also scary as we never know when that might change. What is effective rest is a great question - one I shall carry with me as I try and find my own answer to that... I haven't cracked it yet!! xx
Id love to hear your reflections on what comes up for you. I imagine the answers ebb and flow depending on what day it is and where we are in the seasons. Alsorts of factors to take into consideration. I’ve turned mine into a blog to share at some point. But it was just what rest looked like on that one particular day. And I wasn’t resting particularly well or in any way perfectly. It was only in writing about it i realised I’d thrown so many self-care practices together that it would’ve taken me a week to get through all those at one time or other. Our journey is not linear but there are bigger, deeper reasons why we are experiencing the wellness we are now. The way we choose to live our lives being one of them.
Lovely, Emma and in my mind a metaphor for life...we take what we get, hopefully with a measure of grace tho being only human sometimes not, being mindful of how we effect our beloveds, and holding responsibility for our own selves.
xx
yes indeed xx
Great to hear you're feeling well Emma. This piece resonates a lot with my own journey with autoimmune disease. It's so tempting to push it in the windows of wellness and then crash all over again. I think I did this last year and have paid the price by being in hibernation for the last 3 months, all through the New Zealand summer. Learning to rest sufficiently BEFORE I hit the wall is an ongoing process of calibration....
Isn't it just - it's almost impossible because the 'well' feeling is so joyous, and we want to live again like we used to. An ongoing process of calibration is exactly right!! So many of us experience this, I hope you are coming out of your hibernation now. Much love x
This got me right in the feels. My other half has Crohn’s and it can be, at different times, heartbreaking and frustrating. The fatigue can get him badly sometimes and I feel like the most awful person when he’s full of energy, looking at all the fun things we can do and I have to be the bad cop and temper things, so he doesn’t crash for days afterwards.
Chronic conditions suck. My heart goes out to you. And your family. The mental side of it is awful too. And the perception of others who don’t really understand what’s causing it. It’s just rough. So I’m glad to hear you’re feeling good and long may it continue. The thing I’ve learned from my partner is to rest even when you don’t feel you need to. We now don’t go on holiday without building in specific rest days where we can read or just be alone and quiet. It’s worth it.
❤️
Oh Karen thank you SO much for giving this perspective. My brother had Crohn's so I grew up with it in my household but as a younger sibling, so not really able to feel that impact of the 'carer'. What you say is so true, and I know my husband would whole-heartedly agree with this perspective - particularly about resting even when I don't feel I need to. Wise words indeed! It is so easy to forget to do that when you feel 'well' and are chomping at the bit to live to the full, but it's all about sustaining it. Sending you much love x
Absolutely. We had this discussion right after I posted that comment actually! He gets proper shiny object syndrome so sometimes I feel like a proper Scrooge saying no we probably should think carefully. It’s hard to have to make those decisions but it works out for the best I think and he is better at hearing me.
I suppose it’s knowing when to slow down and when to plough full steam ahead and sod the consequences 😂 x
Totally. And sometimes it’s ok to make the decision to steam ahead, accepting that there will be consequences…it’s just realising the consequences aren’t just for us, they impact our families too… and yes…shiny object syndrome…I suffer terribly with that 🤣💕
Exactly 😂 I think this is why we have to have lots of discussions around it.
Such an honest piece and I can resonate with that total desire to feel normal, to feel well. During treatment, there was one day where the body aches were too much and I got mad with myself and thought I need to distract, so I took myself out in a walk with the dog, on a cold windy day, and boy did I pay for it later, I felt so much worse and it was a total lesson to me to sometimes you have to go to bed and give in, and for me that mental battle was so much harder than the physical one.
I’m so glad you are feeling well, and long may it continue, but also look after yourself, but I know you know that ❤️
Thank you darling, and yes God knows you know how it is. Sometimes the mental benefit and pull to get outside and do ‘stuff’ is overwhelming, and sometimes it’s worth the consequences, it’s just rubbish to have to make that choice. Long may we both stay well ❤️
Damn you Emma Simpson and your truth telling 😘 I needed to read this and didn’t want to read this... also you made me cry. Thank you for writing and sharing this.
Your first sentence made me laugh out loud in the first instance, and then want to give you the most massive hug in the world. It's a tricky path, but we walk it together. Sending much love x
Great piece, Emma. I’m so pleased for you that you are feeling well. Long may that continue 🧡
Your awareness of others around you is surely a great sign that you have the headspace to be aware? I don’t know if that makes sense (it did in my head!).
Another cuppa soon? Xxx
That makes perfect sense!! Yes - that's so true. When I'm in the thick of it, I can't think further than my own immediate situation which can make it feel very 'selfish' - in the literal sense. I think the wider perceptions do come with the increased capacity of being well, so that's definitely a win! x
Emma, thank you for your 360 degree observations, which are honest and fragile, the waiting in the wings for everything to change in a heartbeat, for you and your family.
When people bravely open up and reveal their vulnerability, there’s a connection created, a line to follow, understand more, even a lifeline for others to hope for better days.
There are so many ways a person can be in need of care and then the ripples rock the boats around them, families, work colleagues and friendships adjust and shift a bit, leaving an impression or sometimes a fracture. Caring is tiring too. The idea that you can try to protect your love ones from the impact of illness throws you into a further state of feeling you failed to do this too… what you’ve written is brave and honest. Do take care of you.
Thank you so much for your lovely comments. It is that feeling of failure to protect that can be so devastating, and the unpredictability for everyone. I guess that's why I try and embrace the stable times to the fullest when they come, but it is such a delicate balance to make sure it doesn't tip back again! Much love x
So much resonates! Raising awareness for the impact chronic illness has on others has been a big topic that’s been at the back of my mind for years. It’s not so much talked about and it needs to be.
“To be knackered in a normal way, instead of debilitated. To feel pain in response to logical occurrences instead of just randomly.” I hear this. Finding myself in a similar space at the moment. Though I’ve never experienced the level of wellness I do now. Last night I wrote a blog answering the question “what does effective rest mean to me?” It’s an interesting prompt to sit with. Wildly different to what effective rest used to mean to me back in ‘those days’. But something I must sit with and give space to so that I still incorporate sufficient rest into my days/week/months to enable me to continue to live well from within.
It's not much talked about at all is it, and I know you and I are both in similar periods of wellness which is AMAZING, but also scary as we never know when that might change. What is effective rest is a great question - one I shall carry with me as I try and find my own answer to that... I haven't cracked it yet!! xx
Id love to hear your reflections on what comes up for you. I imagine the answers ebb and flow depending on what day it is and where we are in the seasons. Alsorts of factors to take into consideration. I’ve turned mine into a blog to share at some point. But it was just what rest looked like on that one particular day. And I wasn’t resting particularly well or in any way perfectly. It was only in writing about it i realised I’d thrown so many self-care practices together that it would’ve taken me a week to get through all those at one time or other. Our journey is not linear but there are bigger, deeper reasons why we are experiencing the wellness we are now. The way we choose to live our lives being one of them.