This is one of the best explanations of ME/CFS I’ve seen. Really really well done.
I was one of the lucky ones who came across the right information on social media and gave myself the stability (physically, mentally, spiritually) I needed to let my body recover. Even so, it’s taken a year to feel “like myself” again- aka not severe. I know I still have to be mindful.
There’s really no way to recommend an energy healer to a stranger on the internet without sounding ridiculously spammy, but my friend Luna is remote and has helped me work through so much of the grief and fear you mentioned. Please, please don’t hesitate to reach out if you ever want her contact.
Thank you, I definitely don’t take anything for granted and hope to have the opportunity to support other people on their individual paths. I just sent you her info. Glad we’ve connected!
Wow. This is incredibly insightful. And sounds a lot like Mel Abbott’s journey from bed for 15 years to recovery. It also sounds like the work you’re doing is very much aligned with hers. If you want to check her out, she’s here: https://empowertherapies.co.nz/
It took me a few days to soak this up and I want to read it again...it's a big ball of wax. I hear you on ALL OF IT. I'm surprised that I show signs of aging, because I don't feel like I should be...why would I, when I've been in stasis for so long?
I've had that thought too, that maybe being sick was the ultimate (and only) "get out of jail free card" on just not trying so hard to be perfect in every damn way. I chafe at the idea I'm scared to heal...because in every instance I have felt even a little better I 1) haven't noticed until I felt worse again and 2) immediately just started lifing...but I think it's important thing to sit with. ESP since I DO feel a "whomp" of recognition when you say your body feels afraid to be well. Mine certainly doesn't want to let down its defenses.
I don't know if it can help, symptom-wise. I do agree, as long as you aren't pushing yourself, it can't hurt. And it's kinda--why the hell not? Why not slow down and enjoy and rest and savor? No, it is NOT a lazy Sunday...but would it be so bad if parts of it felt like one, sometimes, even for a 10 minute meditation?
I've been slowly working on this nervous system slowing too, so you've got a buddy in me on this! Thank you for writing it out so well.
Thank you for taking your time with all of this, and for all this reflection. It really is such a strange existence, and yes, I think a little more Lazy Sunday could be really good for me/us. I'm starting with some hot chocolate-flavored LMNT in the morning while painting by numbers because WHAT THE HELL IT CAN'T HURT (except for my neck which I threw out hunching over the table because lolololol of course I did)
My partner just shared this with me, advising me to only read when I’m feeling ready. I was ok until you got to the divorce part (I was two).
I’m on pretty much the same journey, 10+ years with me/cfs, and it took me years in recovery but never really being able to find or address the root cause to finally say to myself ‘enough. I’m ready to be well’. What a terrifying and hopeful step we’ve taken. I’m really feel you on the inability to rest- I’ve discovered that my nervous system never felt safe truly resting, as I never got the tools to be safe sitting in and with my own emotions (see parents divorce at two), and now I’m spending a lot of time lying flat on my bed, just breathing until something comes up. And then watching my very real physical symptoms fade away in real time.
It’s really cool that others here get this, cause man it is hard to explain to the average person who has never had to contemplate the miracle that their body just does what they’d like it to do every day of their lives.
I'm so glad you found your way to this piece, and waited until you were ready! And that it resonated with you.
And ooof yeah, the inability to rest is so real. I don't think I even knew what a body at rest felt like until like two years into somatic therapy. And I never had a full day of that feeling until I started doing brain retraining. It is WILD that people walk around feeling like this all the time. It is WILD that we managed to survive as long as we did NEVER feeling that way.
I'm still struggling to rest as much as I need to. Every time I start feeling better, I revert to old patterns. It's such a long, slow road. People say that living with this illness takes the discipline of an Olympic athlete, and I believe it. Maybe we should make ourselves matching jackets, and give each other medals lol.
Hate that we're both here, but glad that we're in it together.
(Also curious what tools you're using to regulate your nervous system?)
Molly, thanks for sharing your story and your experience.
You seem like a really beautiful and authentic person.
I really appreciate what you shared and I don’t like that I relate to so much of it.
I do not have any of the diagnosis that you do, but I have been diagnosed with OCD and, generalized anxiety disorder, as well as being in recovery for an eating disorder and, the other day I was thinking that I cannot remember what it feels like to feel really well.
I can’t tell if my mind is playing tricks on me or not. I can’t decide if I just have more awareness now or if I feel worse. I see one of my children doing the same, always thinking there’s something wrong with him. Always having 1,000,000 worrisome symptoms. Sometimes I don’t know if they’re real or I am making them up in my mind.
I have been trying deep rest and ancestral nutrition. Along with therapy, and lots of time outside.
I’ve tried the manifestation and the crystals and all that shit too. 😂
I clench my jaw while I’m sleeping too.
When I was in rehab, one of the therapist thought that I may have an addiction to misery. I think she may be partially right, and sometimes when I catch my thoughts, I redirect them and that does seem to help some.
A few years ago, something really interesting happened. I started to feel an increase in some symptoms that I would have transiently, and I lay down on the couch completely stressed out. I definitely felt like I was escaping from my life. I was leaving a domestic violence relationship and my entire world was falling apart. I was traumatized and so were my children.
I lay down on the couch and I heard this little voice in my consciousness, saying “let the sickness take you away”
I still shudder when I think of it.
I mentioned it to my therapist, and she did not seem fazed.
I’m really inspired by your vulnerability and sharing all of this. Every once in a while, I come across an essay that really sits with me, and this one really hits home.
Thank you so much for sharing how my piece resonated with you, and sharing so much of your story. Wow, we really do have a lot in common, don't we? The OCD, the eating disorder... I also get it about "let the sickness take you away." I didn't have that exact experience, but there's something about it I... get. I definitely think nervous system dysregulation is a huge part of all this - if not a part of the disease itself, then at least part of what helps perpetuate a state of unrest and un-healing. The OCD really shoots us in the foot in that way.
I hope we both find some peace and relief. And I'm glad we've at least found some validation in each other!
great piece! almost 5 years in bed for me. it’s interesting how challenging it is to read about someone’s search for improvement- not even recovery - there’s a part of me that can’t handle it because if others can be « productive » and heal themselves while sick then i should too right??
i also relate to the fear of getting better. not exactly for the same reasons, but more from a sense of not knowing who the fuck i would be, where to live, etc when my choices have been dictated by illness for so long. and of course the grief.. i had some improvement last year and i had a ton of grief and terror to get back to as bad again. (which i did..)
nyway, great job teasing out the nuances of it all!
Omg i COMPLETELY understand the challenge. Honestly I can't really read recovery stories because they just make me feel bad about myself. It took me so long to start feeling like I should be trying all the things every second of every day, and to accept where I am and that I might not get better, and every time someone improved, I'd feel guilty - like I wasn't working hard enough. I truly believe, though, that I could not have found improvement before I did, or any way other than I did, and that gives me a lot of comfort. Like it's not like I was doing something wrong and then started doing something right. I kept following my body and intuition, and this was the right time for this. (And who knows if I'll have any more than this. The most significant improvement really is my mental health, and that's mostly where I focus the majority of my energy.)
As for the fear of getting better, that is EXACTLY why I'm afraid. I have no clue who I'd be. It's not just that I'm afraid I'll have to live the life I led before, but I have no idea how to live now. Exactly the things you mention. Where would I even go? What would I even do? What do I even like to do? It feels so open and scary, and I'm afraid I wouldn't handle it well (though I try to tell myself that I"m a different person now, and I can't know that). It reminds me of those studies about the tyranny of choice. Life without illness is a supermarket aisle with too many kinds of peanut butter.
As for the terror of getting worse again - oh god. I don't know how people who recover live with that terror. And I'm sorry you got worse again. It's such a heartbreak, even just to have a good day and then another crash, much less to have improvement and then backslide. I'm sending you big hugs.
Thanks so much for commenting. Really appreciate you sharing.
i see what you mean. its not exactly the same but i’m taking my healthcare into my hands in a way i just couldnt do before now and part of it is getting the skills etv and part of it is new faith in how much i can influence things, due to my own remission last year and a friend’s more recently
re fear of getting better, totally agree with the too many PB choices. also a difficult sense of healthy life is so precious i’d be scared to waste it doing things that aren’t meaningful enough like getting stuck in a demanding job. i think the advantage here though is we’re much more likely to get better very slowly than in one go.
Omg you're so right about getting better slowly. Every time I imagine it, I'm cured instantly, like tomorrow, and then I'm a fish out of water. But you're right that IF it were even to happen, it would be gradual, and I'd adjust gradually. That just gave me a lot of comfort, actually. Thank you!
Haven’t finished, have to take this in bite sized bits as it hits so close to home. I’ve never heard my experiences so clearly mirrored and expressed. It’s a gift. Thank you for this, I certainly will come back to chew on it more. Very moving, thank you 🤍
Omg thank you so much for saying so. It means the world to know someone else understands and feels the way I do. I would love to hear more about your experience, and what resonates with you, either in the comments or private message.
I really appreciate this article as it voices what so many people living with chronic and long term illness feel. I spent almost two years in a body that fought me every inch, but one that i felt blessed still to have. I was able to by a miracle pull myself out of it. It is truly one of those things we don't realize the privilege of having a healthy body until it is taken. It is exceptional you are willing to share your story and i am grateful for it 🙏
Thank you for this, and congrats on your recovery! I can only imagine all the complex emotions you must feel (including that gratitude). I sometimes think about what it would be like to live healthy again, knowing what not-healthy feels like. Like I don't think it's something you can go back to ignoring...? Probably in good and bad ways. Even at the level I am now, though, I'm grateful for the level of health I do have. It really is remarkable how both fragile and resilient our bodies are.
Yes I completley agree. Our bodies can withstand an incredible amount. For me I think a lot of it now is the mental aftermath I am working on. Praying for as much healing for you 🙏
Any time I read a piece written by someone with ME it gives me pause, because I struggle so much with daily activities and basically torture myself to maintain the daily activities of a “normal” person—getting up, bathing, job, bills, socializing, etc—but I feel like just one degree to the left and this is where I would be. I’ve built my life around rest and naps, but it’s a house of cards. What will happen to me if any part of it collapses. I wonder this all the time at night (the only time I don’t want to sleep)
Oh wow do I relate to this. I spent so many years with moderate ME (but didn't know it), trying to hard to keep up with normies because I kinda sorta could...? Except I couldn't. Man it was exhausting.
And then once I got severe, and realized that losing function is a thing, I lived in constant fear that I'd fall down the ladder (for a long time the symbol of that was feeding tube, or dark room no sound).
It's so hard to constantly work not to get worse, without constantly fearing getting worse. The brain retraining program I'm in (which believe me I resisted, but it's great) is helping me a lot with that balance.
Oh and I feel the same about stories about people with ME too, because so often they don't reflect my reality and make me feel bad one way (they're so much better off than me) or the other (they're worse off and embody my fears for myself).
The one thing I CAN say is what will happen to you if it all collapses....? Well I don't know what it will be for YOU, but for me, it actually has been surprisingly... livable? After the dark period, I figured out how to have an amazing life, one that I actually like in a lot of ways better than the life I was living when I was trying to keep up. And that gives me hope that even if I were to get worse, I'd find a way to be able to handle that too. So maybe that's also true for you...? Maybe you'd surprise yourself by how much you could handle it. And if it does happen, I (and others like me) will be here to support you through it.
Thank you for your amazing reply. Something that I took from your essay is the physical risk that comes with having a brain you cannot turn off, and I’ve been thinking about it so much over the past few days. That’s something I have never focused on improving before but it feels like a good place to start for both current and preventative purposes!
Oh I'm so glad you took that from my essay! Because it's really been a game changer for me. Like, I thought I already got it - hence having TWO therapists - but I didn't REALLY get it until I started the brain retraining with Edison Effect, and monitoring and managing my nervous system state all day every day.
One caveat: many of the brain retraining programs - Gupta, Lightening, DNRS, ANS Rewire - can be sort of self-gaslighty, and SUPER expensive, and inadvertently (or advertently) encourage you to push your limits, and that's all sort of counter productive. I know people who've found a way to adapt those programs for themselves in a healthy way, but I'm the kind of person who likes to follow rules to the letter, and has a hard time "taking what works and leaving the rest," so I know I'd be susceptible to hurting myself with those programs.
I like Edison because it's explicitly NOT gaslighty, and is very gentle.
Whatever you do, I HIGHLY recommend addressing the brain weasels and the brain squirrels (by getting neurodivergence and mental illness diagnosed and treated/managed, by addressing trauma - preferably through something like Somatic Experiencing Therapy and EMDR, by brain retraining). At the very least, it will make living with this illness more bearable. At the best, it will actually improve symptoms and function.
Oh my goodness, Molly. I’m in tears having just finished reading this.
As someone with Severe Long Covid which has led to Severe M.E./CFS you’ve captured SO much of my experience, not just in the last 4 years that I’ve been disabled, housebound and very often bedbound, but also so much of my life before it. The parallels are WILDDDD. I see so much of myself in your story. You’ve captured it all so beautifully and with heart-breaking accuracy. I feel it resonate deep in my chest and I wish I could give both of our younger selves a hug.
Also that balance between acceptance and hope, OOF. Thank god for therapy, right?! And yes, time truly has no meaning when you’re chronically ill!
Sending so so much love, gentleness and spoons your way from Scotland ♥️♥️♥️
Omg Melanie, thank you so much for this. It means so much that you see yourself in this, and feel I captured it accurately. I wish I could give both of our young selves hugs too, and our NOW selves! (Or rather, I wish I could meet and hug you).
And yes, thank god for therapy. Like seriously.
Sending love back to Scotland! (Fun fact: I got super into Scotland when I was in 2nd grade. Did my school report on Scotland. Took Highland dancing classes. And of course now I watch Outlander like every other middle-aged white lady in America. I hope to visit someday.)
Wow! Thank you Molly for sharing and offering an opportunity for connection.
I’m about to hit the 5 year marker of the moment my body, mind and spirit shut down. The time is exactly like you write…slow, but fast…like nothing has changed and everything has changed.
Although I am living a life that is unrecognizable to the life I was leading up until five years ago…my life before was exactly as you describe. I lived completely dissociated from all the discomfort I felt inside of myself. Pushing through, achieving, succeeding…all motivated by anxiety, fear and lack of feeling safe (I am only now seeing). I never want to return to that version of myself…but I could handle the struggle letting up just a bit😵💫…it feels refreshing for me to stumble into your life and find someone else living through the struggle.
I often feel like I’m living on a different plane of existence than the rest of humanity. It’s everything to feel less alone in the struggle…thank you again for sharing…it all resonates so deeply for me and my experience!❤️❤️
omg ERIN thank you so much for writing. It is so comforting and validating to hear someone else experienced pre-shut down life similar to the way I did. So many stories are about "life was great and now I'm sick and I just want my life back!" and for me it's just so much more complicated than that. Life was HARD but also I don't want this either...? I just want less struggle, thanks. And also being able to get out of bed would be nice too.
Thank you for commenting, and please reach out any time. It means a lot to know my writing touched you, and to have another buddy in this weird limbo time warp.
“The weird limbo time warp”….yes!!!!! That is a perfect way to explain it.
I’ve been diagnosed with Fibromyalgia and cervicogenic pain, along the mental health stuff like anxiety and depression. This seems to satisfy the insurance company (thank god since I haven’t been able to work since this began), but it doesn’t resonate for my reality. Yes I’ve had anxiety for as long as I can remember…but I grew up in a very unstable environment. The other stuff has been a product of living completely dissociated from the discomfort related to feeling unsafe…I have such tension in my body that I can’t move for more than 30 minutes without resting on ice…chronic pain results in such exhaustion and surprise, surprise…bouts of depression. So many limitations that keep my life so small…it’s hard on a person’s soul.
My current struggle is to learn how to actually feel things…identify emotions that anxiety has seemed to cover and feel them…all of them…including guilt and sadness, and oh yeah anger. It’s a lot to hold all at once. I’m hoping awareness and space will build my capacity…
Please feel free to reach out as well! Connection does so much to combat isolation and aloneness❤️
Very thoughtful and beautifully told story of pretty much your whole life. And I love the idea of you finding movements/thoughts/actions that you can do that will maybe not make you better but will not make you worse. Hugs to you cousin.
This is one of the best explanations of ME/CFS I’ve seen. Really really well done.
I was one of the lucky ones who came across the right information on social media and gave myself the stability (physically, mentally, spiritually) I needed to let my body recover. Even so, it’s taken a year to feel “like myself” again- aka not severe. I know I still have to be mindful.
There’s really no way to recommend an energy healer to a stranger on the internet without sounding ridiculously spammy, but my friend Luna is remote and has helped me work through so much of the grief and fear you mentioned. Please, please don’t hesitate to reach out if you ever want her contact.
Wishing you peace, safety, and real rest. ❤️
omg what an incredible compliment. Thank you so very much.
And I'm so glad you came across the right info in the right timing. I hope that will be true for more and more people.
As for your energy healer, I'm interested! Please send info! Privately or in comments here.
I'm glad you reached out.
Thank you, I definitely don’t take anything for granted and hope to have the opportunity to support other people on their individual paths. I just sent you her info. Glad we’ve connected!
Hi Lisa, could you also send me a message w healer info?
Absolutely!
Wow. This is incredibly insightful. And sounds a lot like Mel Abbott’s journey from bed for 15 years to recovery. It also sounds like the work you’re doing is very much aligned with hers. If you want to check her out, she’s here: https://empowertherapies.co.nz/
Oh amazing! Thank you!
It took me a few days to soak this up and I want to read it again...it's a big ball of wax. I hear you on ALL OF IT. I'm surprised that I show signs of aging, because I don't feel like I should be...why would I, when I've been in stasis for so long?
I've had that thought too, that maybe being sick was the ultimate (and only) "get out of jail free card" on just not trying so hard to be perfect in every damn way. I chafe at the idea I'm scared to heal...because in every instance I have felt even a little better I 1) haven't noticed until I felt worse again and 2) immediately just started lifing...but I think it's important thing to sit with. ESP since I DO feel a "whomp" of recognition when you say your body feels afraid to be well. Mine certainly doesn't want to let down its defenses.
I don't know if it can help, symptom-wise. I do agree, as long as you aren't pushing yourself, it can't hurt. And it's kinda--why the hell not? Why not slow down and enjoy and rest and savor? No, it is NOT a lazy Sunday...but would it be so bad if parts of it felt like one, sometimes, even for a 10 minute meditation?
I've been slowly working on this nervous system slowing too, so you've got a buddy in me on this! Thank you for writing it out so well.
Thank you for taking your time with all of this, and for all this reflection. It really is such a strange existence, and yes, I think a little more Lazy Sunday could be really good for me/us. I'm starting with some hot chocolate-flavored LMNT in the morning while painting by numbers because WHAT THE HELL IT CAN'T HURT (except for my neck which I threw out hunching over the table because lolololol of course I did)
My partner just shared this with me, advising me to only read when I’m feeling ready. I was ok until you got to the divorce part (I was two).
I’m on pretty much the same journey, 10+ years with me/cfs, and it took me years in recovery but never really being able to find or address the root cause to finally say to myself ‘enough. I’m ready to be well’. What a terrifying and hopeful step we’ve taken. I’m really feel you on the inability to rest- I’ve discovered that my nervous system never felt safe truly resting, as I never got the tools to be safe sitting in and with my own emotions (see parents divorce at two), and now I’m spending a lot of time lying flat on my bed, just breathing until something comes up. And then watching my very real physical symptoms fade away in real time.
It’s really cool that others here get this, cause man it is hard to explain to the average person who has never had to contemplate the miracle that their body just does what they’d like it to do every day of their lives.
Hurrah to us cause this shit is hard.
I'm so glad you found your way to this piece, and waited until you were ready! And that it resonated with you.
And ooof yeah, the inability to rest is so real. I don't think I even knew what a body at rest felt like until like two years into somatic therapy. And I never had a full day of that feeling until I started doing brain retraining. It is WILD that people walk around feeling like this all the time. It is WILD that we managed to survive as long as we did NEVER feeling that way.
I'm still struggling to rest as much as I need to. Every time I start feeling better, I revert to old patterns. It's such a long, slow road. People say that living with this illness takes the discipline of an Olympic athlete, and I believe it. Maybe we should make ourselves matching jackets, and give each other medals lol.
Hate that we're both here, but glad that we're in it together.
(Also curious what tools you're using to regulate your nervous system?)
Molly, thanks for sharing your story and your experience.
You seem like a really beautiful and authentic person.
I really appreciate what you shared and I don’t like that I relate to so much of it.
I do not have any of the diagnosis that you do, but I have been diagnosed with OCD and, generalized anxiety disorder, as well as being in recovery for an eating disorder and, the other day I was thinking that I cannot remember what it feels like to feel really well.
I can’t tell if my mind is playing tricks on me or not. I can’t decide if I just have more awareness now or if I feel worse. I see one of my children doing the same, always thinking there’s something wrong with him. Always having 1,000,000 worrisome symptoms. Sometimes I don’t know if they’re real or I am making them up in my mind.
I have been trying deep rest and ancestral nutrition. Along with therapy, and lots of time outside.
I’ve tried the manifestation and the crystals and all that shit too. 😂
I clench my jaw while I’m sleeping too.
When I was in rehab, one of the therapist thought that I may have an addiction to misery. I think she may be partially right, and sometimes when I catch my thoughts, I redirect them and that does seem to help some.
A few years ago, something really interesting happened. I started to feel an increase in some symptoms that I would have transiently, and I lay down on the couch completely stressed out. I definitely felt like I was escaping from my life. I was leaving a domestic violence relationship and my entire world was falling apart. I was traumatized and so were my children.
I lay down on the couch and I heard this little voice in my consciousness, saying “let the sickness take you away”
I still shudder when I think of it.
I mentioned it to my therapist, and she did not seem fazed.
I’m really inspired by your vulnerability and sharing all of this. Every once in a while, I come across an essay that really sits with me, and this one really hits home.
I wish you so much goodness on your journey.
Thank you so much for sharing how my piece resonated with you, and sharing so much of your story. Wow, we really do have a lot in common, don't we? The OCD, the eating disorder... I also get it about "let the sickness take you away." I didn't have that exact experience, but there's something about it I... get. I definitely think nervous system dysregulation is a huge part of all this - if not a part of the disease itself, then at least part of what helps perpetuate a state of unrest and un-healing. The OCD really shoots us in the foot in that way.
I hope we both find some peace and relief. And I'm glad we've at least found some validation in each other!
this came across my feed, just wanted to say i enjoy the way you write, and, thank you for sharing your story 💛
Thank you so much for saying so. It means a lot. <3
Thank you for sharing your story.
Thank you for reading it! <3
We seem to be living the same life. I love how accurately you describe it. Not many of us who are the sick have the ability to convey exactly how it feels to be this sick. I wrote this piece and I thought you might enjoy it: https://open.substack.com/pub/jesshoneybadger/p/what-exactly-is-so-bad-about-severe?r=5nrz9&utm_medium=ios
Thank you! And ugh I'm sorry you get it, but also glad we have other people who get it...? I'll check out your piece!
great piece! almost 5 years in bed for me. it’s interesting how challenging it is to read about someone’s search for improvement- not even recovery - there’s a part of me that can’t handle it because if others can be « productive » and heal themselves while sick then i should too right??
i also relate to the fear of getting better. not exactly for the same reasons, but more from a sense of not knowing who the fuck i would be, where to live, etc when my choices have been dictated by illness for so long. and of course the grief.. i had some improvement last year and i had a ton of grief and terror to get back to as bad again. (which i did..)
nyway, great job teasing out the nuances of it all!
Omg i COMPLETELY understand the challenge. Honestly I can't really read recovery stories because they just make me feel bad about myself. It took me so long to start feeling like I should be trying all the things every second of every day, and to accept where I am and that I might not get better, and every time someone improved, I'd feel guilty - like I wasn't working hard enough. I truly believe, though, that I could not have found improvement before I did, or any way other than I did, and that gives me a lot of comfort. Like it's not like I was doing something wrong and then started doing something right. I kept following my body and intuition, and this was the right time for this. (And who knows if I'll have any more than this. The most significant improvement really is my mental health, and that's mostly where I focus the majority of my energy.)
As for the fear of getting better, that is EXACTLY why I'm afraid. I have no clue who I'd be. It's not just that I'm afraid I'll have to live the life I led before, but I have no idea how to live now. Exactly the things you mention. Where would I even go? What would I even do? What do I even like to do? It feels so open and scary, and I'm afraid I wouldn't handle it well (though I try to tell myself that I"m a different person now, and I can't know that). It reminds me of those studies about the tyranny of choice. Life without illness is a supermarket aisle with too many kinds of peanut butter.
As for the terror of getting worse again - oh god. I don't know how people who recover live with that terror. And I'm sorry you got worse again. It's such a heartbreak, even just to have a good day and then another crash, much less to have improvement and then backslide. I'm sending you big hugs.
Thanks so much for commenting. Really appreciate you sharing.
i see what you mean. its not exactly the same but i’m taking my healthcare into my hands in a way i just couldnt do before now and part of it is getting the skills etv and part of it is new faith in how much i can influence things, due to my own remission last year and a friend’s more recently
re fear of getting better, totally agree with the too many PB choices. also a difficult sense of healthy life is so precious i’d be scared to waste it doing things that aren’t meaningful enough like getting stuck in a demanding job. i think the advantage here though is we’re much more likely to get better very slowly than in one go.
Omg you're so right about getting better slowly. Every time I imagine it, I'm cured instantly, like tomorrow, and then I'm a fish out of water. But you're right that IF it were even to happen, it would be gradual, and I'd adjust gradually. That just gave me a lot of comfort, actually. Thank you!
Haven’t finished, have to take this in bite sized bits as it hits so close to home. I’ve never heard my experiences so clearly mirrored and expressed. It’s a gift. Thank you for this, I certainly will come back to chew on it more. Very moving, thank you 🤍
Omg thank you so much for saying so. It means the world to know someone else understands and feels the way I do. I would love to hear more about your experience, and what resonates with you, either in the comments or private message.
I really appreciate this article as it voices what so many people living with chronic and long term illness feel. I spent almost two years in a body that fought me every inch, but one that i felt blessed still to have. I was able to by a miracle pull myself out of it. It is truly one of those things we don't realize the privilege of having a healthy body until it is taken. It is exceptional you are willing to share your story and i am grateful for it 🙏
Thank you for this, and congrats on your recovery! I can only imagine all the complex emotions you must feel (including that gratitude). I sometimes think about what it would be like to live healthy again, knowing what not-healthy feels like. Like I don't think it's something you can go back to ignoring...? Probably in good and bad ways. Even at the level I am now, though, I'm grateful for the level of health I do have. It really is remarkable how both fragile and resilient our bodies are.
Thank you for commenting. I appreciate it a lot.
Yes I completley agree. Our bodies can withstand an incredible amount. For me I think a lot of it now is the mental aftermath I am working on. Praying for as much healing for you 🙏
Any time I read a piece written by someone with ME it gives me pause, because I struggle so much with daily activities and basically torture myself to maintain the daily activities of a “normal” person—getting up, bathing, job, bills, socializing, etc—but I feel like just one degree to the left and this is where I would be. I’ve built my life around rest and naps, but it’s a house of cards. What will happen to me if any part of it collapses. I wonder this all the time at night (the only time I don’t want to sleep)
Oh wow do I relate to this. I spent so many years with moderate ME (but didn't know it), trying to hard to keep up with normies because I kinda sorta could...? Except I couldn't. Man it was exhausting.
And then once I got severe, and realized that losing function is a thing, I lived in constant fear that I'd fall down the ladder (for a long time the symbol of that was feeding tube, or dark room no sound).
It's so hard to constantly work not to get worse, without constantly fearing getting worse. The brain retraining program I'm in (which believe me I resisted, but it's great) is helping me a lot with that balance.
Oh and I feel the same about stories about people with ME too, because so often they don't reflect my reality and make me feel bad one way (they're so much better off than me) or the other (they're worse off and embody my fears for myself).
The one thing I CAN say is what will happen to you if it all collapses....? Well I don't know what it will be for YOU, but for me, it actually has been surprisingly... livable? After the dark period, I figured out how to have an amazing life, one that I actually like in a lot of ways better than the life I was living when I was trying to keep up. And that gives me hope that even if I were to get worse, I'd find a way to be able to handle that too. So maybe that's also true for you...? Maybe you'd surprise yourself by how much you could handle it. And if it does happen, I (and others like me) will be here to support you through it.
Thank you for your amazing reply. Something that I took from your essay is the physical risk that comes with having a brain you cannot turn off, and I’ve been thinking about it so much over the past few days. That’s something I have never focused on improving before but it feels like a good place to start for both current and preventative purposes!
Oh I'm so glad you took that from my essay! Because it's really been a game changer for me. Like, I thought I already got it - hence having TWO therapists - but I didn't REALLY get it until I started the brain retraining with Edison Effect, and monitoring and managing my nervous system state all day every day.
One caveat: many of the brain retraining programs - Gupta, Lightening, DNRS, ANS Rewire - can be sort of self-gaslighty, and SUPER expensive, and inadvertently (or advertently) encourage you to push your limits, and that's all sort of counter productive. I know people who've found a way to adapt those programs for themselves in a healthy way, but I'm the kind of person who likes to follow rules to the letter, and has a hard time "taking what works and leaving the rest," so I know I'd be susceptible to hurting myself with those programs.
I like Edison because it's explicitly NOT gaslighty, and is very gentle.
Whatever you do, I HIGHLY recommend addressing the brain weasels and the brain squirrels (by getting neurodivergence and mental illness diagnosed and treated/managed, by addressing trauma - preferably through something like Somatic Experiencing Therapy and EMDR, by brain retraining). At the very least, it will make living with this illness more bearable. At the best, it will actually improve symptoms and function.
Oh my goodness, Molly. I’m in tears having just finished reading this.
As someone with Severe Long Covid which has led to Severe M.E./CFS you’ve captured SO much of my experience, not just in the last 4 years that I’ve been disabled, housebound and very often bedbound, but also so much of my life before it. The parallels are WILDDDD. I see so much of myself in your story. You’ve captured it all so beautifully and with heart-breaking accuracy. I feel it resonate deep in my chest and I wish I could give both of our younger selves a hug.
Also that balance between acceptance and hope, OOF. Thank god for therapy, right?! And yes, time truly has no meaning when you’re chronically ill!
Sending so so much love, gentleness and spoons your way from Scotland ♥️♥️♥️
Omg Melanie, thank you so much for this. It means so much that you see yourself in this, and feel I captured it accurately. I wish I could give both of our young selves hugs too, and our NOW selves! (Or rather, I wish I could meet and hug you).
And yes, thank god for therapy. Like seriously.
Sending love back to Scotland! (Fun fact: I got super into Scotland when I was in 2nd grade. Did my school report on Scotland. Took Highland dancing classes. And of course now I watch Outlander like every other middle-aged white lady in America. I hope to visit someday.)
Wow! Thank you Molly for sharing and offering an opportunity for connection.
I’m about to hit the 5 year marker of the moment my body, mind and spirit shut down. The time is exactly like you write…slow, but fast…like nothing has changed and everything has changed.
Although I am living a life that is unrecognizable to the life I was leading up until five years ago…my life before was exactly as you describe. I lived completely dissociated from all the discomfort I felt inside of myself. Pushing through, achieving, succeeding…all motivated by anxiety, fear and lack of feeling safe (I am only now seeing). I never want to return to that version of myself…but I could handle the struggle letting up just a bit😵💫…it feels refreshing for me to stumble into your life and find someone else living through the struggle.
I often feel like I’m living on a different plane of existence than the rest of humanity. It’s everything to feel less alone in the struggle…thank you again for sharing…it all resonates so deeply for me and my experience!❤️❤️
omg ERIN thank you so much for writing. It is so comforting and validating to hear someone else experienced pre-shut down life similar to the way I did. So many stories are about "life was great and now I'm sick and I just want my life back!" and for me it's just so much more complicated than that. Life was HARD but also I don't want this either...? I just want less struggle, thanks. And also being able to get out of bed would be nice too.
Thank you for commenting, and please reach out any time. It means a lot to know my writing touched you, and to have another buddy in this weird limbo time warp.
“The weird limbo time warp”….yes!!!!! That is a perfect way to explain it.
I’ve been diagnosed with Fibromyalgia and cervicogenic pain, along the mental health stuff like anxiety and depression. This seems to satisfy the insurance company (thank god since I haven’t been able to work since this began), but it doesn’t resonate for my reality. Yes I’ve had anxiety for as long as I can remember…but I grew up in a very unstable environment. The other stuff has been a product of living completely dissociated from the discomfort related to feeling unsafe…I have such tension in my body that I can’t move for more than 30 minutes without resting on ice…chronic pain results in such exhaustion and surprise, surprise…bouts of depression. So many limitations that keep my life so small…it’s hard on a person’s soul.
My current struggle is to learn how to actually feel things…identify emotions that anxiety has seemed to cover and feel them…all of them…including guilt and sadness, and oh yeah anger. It’s a lot to hold all at once. I’m hoping awareness and space will build my capacity…
Please feel free to reach out as well! Connection does so much to combat isolation and aloneness❤️
Very thoughtful and beautifully told story of pretty much your whole life. And I love the idea of you finding movements/thoughts/actions that you can do that will maybe not make you better but will not make you worse. Hugs to you cousin.
Thank you, cousin! And yeah, me too. I'm kind of excited to see what these little (or big) shifts will bring. Love you!
Brava.
Grazie!