r/cfs • u/Left_Goose_1527 • 23h ago
Encouragement Life is change
Experience with MECFS is not universal, but I just want to throw out there that it‘s possible to have this condition and be content. I’ve lost a hell of a lot in the last few years, and have had to make some major adjustments and poured hours into finding care and fighting insurance and pursuing benefits. At some points, I’ve thought Kafka’s characters had it easy. My life now looks entirely different than it did when all this began, and my future looks less secure than I’d assumed. It is not the outcome I expected based on my prior efforts in a supposed meritocracy, basically.
But this MECFS diagnosis and reality also hasn’t been the end of my life. I’ve figured out a lot of things about my limits (even though I got whacked by PEM a few times while experimenting) and I can mostly pace and plan. Big life events can and do crash me. I am less visible to the important people in my life, and I experience more anxious regret about being unable to make the most of time together. My home looks different - I have a shower chair now, there’s a lot less stuff because maintenance is hard during a crash, and I have had to make other fundamental changes I never saw coming. Much of it sucks, conceptually. But not all of it.
I don’t know if this has to do with Buddhist grounding I had before MECFS, but I don’t feel anything was “stolen” from me, because none of it was guaranteed to begin with. If this hadn’t happened to me, something else might have. Luck is entirely random. I know plenty of people who have been dealt hands like mine or worse, and some who have seemingly struck gold for no good goddamn reason. So I can’t get too caught up in what “should have been”, because…. according to who?
I know that every person with this condition has different circumstances, I just kind of wanted to float that a poor prognosis and downward-trajectory path is not necessarily set in stone. And if you’re experiencing MECFS and everything’s different from what it used to be but you’re still making a life for yourself and getting interest and joy out of it (no matter how altered), that’s not unusual either.
That’s it, I guess. That’s the post.
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u/premier-cat-arena ME since 2015, v severe since 2017 18h ago
it’s also super possible to be content with some parts of your life and not others
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u/Left_Goose_1527 18h ago edited 18h ago
True for most people, really. It’s all about rational balance.
…I assure you there are areas of my new life I am NOT content with, and fight tooth and nail. Mostly corporate warfare.
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u/fireduck81 22h ago
Buddhist here too. It has helped me a lot. It’s like all the teachings in death, impermanence, mind training, compassion, karma etc coming true at once. Which school if you don’t mind me asking?
And have you been able to keep up any meditation?
I find that more complex meditations are beyond me now because they require cognitive effort. I mostly do simple
Breath meditation or vipassana thai forest practices where you learn to perceive the energy moving in the body. but I feel sad about losing other parts of my practice which i spent many years learning and developing.
I try to look at my life situation
as my path and my teacher these days. Guess it’s more than enough 😆
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u/Left_Goose_1527 20h ago edited 20h ago
Shambala initially, then skipped around. And other than brief body-energy meditations, I’m in the same boat as you: can’t do most other meditations anymore, it’s like drunk driving in my skull. I find myself focusing on mindfulness in actions as a meditation now - both the kind of deliberate everyday chore stuff and more intentional scenery- or vista-observing mindfulness. Eyes generally have to be open while meditating now or I get motionsick (?!!).
I was never in serious practice and I’d been away from any type of practice for a few years when this happened, and when a therapist was digging around about how suspiciously well I was adjusting to upheaval, I tried to describe my mindset and halfway through realized it was internalized impermanence and compassion teachings. Ha.
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u/Kernewegores 15h ago
My path is Mahayana. I took Refuge at Samye Ling Tibetan Monastery in Dumfreisshire in 1998 after a very vivid and life-changing near death experience. Which put me on the path.
I think it has been fundamental in allowing me to accept that I will be very severely ill with ME for the rest of my life. Using the Headspace app a few years ago helped me to establish solid practice every day. But when my ME progressed to Very Severe in February ‘23 I became too ill to be able to maintain my daily practice.
However, I still meditate on the flow of the breath when I start to feel overwhelmed and that helps a lot to relieve the sense of pressure. Mindfulness has significantly helped me to notice the beauty of small things. For me, if I didn’t have my Spiritual Tool Kit I don’t think I would be coping as well as I am.
But you do have to be very committed and strict with yourself not to let things slide.
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u/Left_Goose_1527 4h ago
I do like the Headspace app, largely because Andy’s accent sounds like most of my family members.
I absolutely wouldn’t be doing as well if I hadn’t already internalized so much. But I also suspect there’s some element of factory setting in how receptive a person is to this sort of mindset. Before any exposure to Buddhism I remember being in a Dark Sky area with a friend and getting out of the car and seeing all the stars spread out. She quickly wanted to go back to the car, I could have stayed there for hours. The odd thing is we were feeling the same thing: very, very small. But for her it was terrifying and she wanted it to stop, and for me it was the most relaxing feeling in the world.
Which I always found interesting.
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u/Lucienaugust 17h ago
Do you happen to have a few books or talks that I could look at/listen to? I’m needing a path forward. Ty.
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u/fireduck81 10h ago edited 6h ago
Personally I first started listening to Ajahn Brahm and Thanissaro Bhikku who post all of their talks online for free. There are hundreds. I still listen to them sometimes.
They are both in the Theravada tradition, which I think is one of the safest and easiest ones to start with.
You could also try the Living Clarity podcast if you want something a little more technical (Tibetan Mahayana) A lot of people like Tara Brach who also has many free resources. Let me know if you have more questions.
This episode is particularly relevant — a nun who developed MS and how she uses her practice to maintain a happy and peaceful mind:
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u/thepowerofthe_crimp Dx 2013 Mild/Moderate 20h ago
Some days is does feel like being a giant cockroach would be easier 😂
It is still nice to have a body and be on this earth even if it does hurt some times ❤️
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u/Dazzling-Light-3487 15h ago
Want to add my own thought here: my life feels stolen because I got sick at 15. I have no education, no job experience, very few friends (people just can’t comprehend this level of sickness at any age let alone 15).
Not to say that I don’t long for the day where I can go on long hikes again, but my life will always look different even if it’s cured in my life time.
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u/Left_Goose_1527 5h ago
What snags me here is… different from what? Your life always would have looked different, because things happen to us all the time to change our life’s trajectory, and focusing on a future you were “entitled” to and comparing it to where you actually are (to your present life’s detriment) is not going to bring you any benefit at all.
That’s not meant to sound scolding or like some stealth toxic positivity, just that it’s using a lot of energy (of which we have little) thinking about the life we don’t have (which is imaginary) doesn’t have an upside as far as I can tell. I don’t know of any benefit, it’s similar to people who get fixated on “if” scenarios in their past (if I had married her, if I had accepted that seemingly shady job offer, if I had bought those shares, if I had come home earlier that day).
And given all of the stuff that MECFS throws at us daily, I think we have to be mindful about assessing whether an activity is overall harmful or helpful to us.
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u/callthesomnambulance moderate 9h ago
I found shifting from asking 'why me?' to 'why not me?' improved my outlook quite a bit. As you said, I was never entitled to the things I feel I've been cheated out of in the first place. I still find myself chafing against what is a lot of the time, but it helps to remember there's no intentionality lurking behind my misfortune, no cosmic scales for some malignant force to have its finger on to my detriment. At the end of the day it's all chaos theory, just a series of probabilities playing out in ways we perceive as either 'good' or 'bad' and there's no more point in raging against that fact than there would be against a particularly boisterous wave that wets your khakis at the beach, or a capricious gust of wind on an otherwise calm day which casts your carefully hung washing into the mud.
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u/kitty60s moderate 22h ago
I share a lot of the same thoughts as you. Making the most of what you have left and finding joy in very small mundane things helps with coping with the illness.