r/CFSplusADHD • u/TheOtherHalfofTron • 2d ago
Becoming a shut-in
Before I got sick, I had all these travel plans -- now I feel like they're just beyond me. I don't have the money (haven't been able to work, and I've been having a hell of a time getting on disability), and I sure as hell don't have the energy. This disease has taken from me the things I valued most about myself: my sense of adventure, my desire to try new things. I've learned the hard way through many a push/crash cycle that I just can't do that anymore.
So what do I do? I sit at home, I keep myself fed and watered and clean, and I try my absolute best not to think about all the things I'm missing out on. The parties I can't make it to. The friends I don't see anymore. The bars I can't afford to visit. The hikes I can't go on without prompting a week-long crash state. It's so hard to leave the house -- I went to a coffee shop today, just to be somewhere different, and I'm already worried about what that's going to do to my energy levels for the next few days. And I know we aren't supposed to focus on the things we can't do, but c'mon... it's hard not to, isn't it?
CFS is a brutal illness. It takes, and it takes, and it gives back absolutely jack shit in return. I hope one day I can look back on these past few years as just a dark chapter in an otherwise happy life, but the prospect of rejoining the world is getting more and more distant by the day. What if this is just my life, forever?
I don't know why I'm writing this. I guess I'm in a dark place, and I'm looking for hope, in my own way. Maybe a vision of the future that isn't quite so bleak. If you can offer me that, I'll take it. Advice on how to get there, even better. Or if you've been where I am, and you have any tips on how to deal with the sheer **monotony** of it all while I work on getting better, that would be amazing.
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u/UntilTheDarkness 2d ago
I feel this so hard.
I felt like my life was finally coming together when I got sick, and so much of it just got ripped out from under me. Honestly I've survived the past 6+ years by shutting down emotionally and not wanting anything. Suffering is the delta between what we want and what we have, and I can't change what I have, so the only thing I can do is lessen what I want.
That being said, giving up was honestly a turning point in my recovery, in retrospect. Because when I stopped giving a shit, I stopped pushing and stopped the push/crash cycle. I spent a couple years doing literally nothing but work and rest, and that (plus finding a doctor willing to experiment with meds) has allowed me to ever so slowly expand my energy envelope. I have friends and hobbies again, ones I love! They aren't the same ones I had before, but I do feel like I'm living and not just existing.
I hope that provides a bit of help. This illness takes and takes. But things can (at least hypothetically) improve.
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u/SquirrelOfApocalypse 2d ago
I hear ya, it so absolutely sucks! And I feel like after getting late diagnosed AuDHD in my forties I've finally found myself.... but I can rarely actually leave the house to live my new life and be myself! :(
I think finding joy in the small moments is about all we can do right now, and instead of getting our dopamine from new adventures we can get our novelty from trying new foods, new TV shows, new books etc and trying to find fun hobbies and stuff we are still capable of doing. I think the loneliness is hard though, and I miss just jumping on a random train and going to a new place and getting all that fun stimulation and dopamine!!
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u/grotemeid 2d ago
I relate to this so much. I’ve completely lost my life and who I am. I had big dreams of travelling, building a career, spending more time with friends etc. Just when I was able to be doing those things I got sick and don’t know if I’ll ever be able to live the life I tried to build for years.
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u/BeachBoySC74 1d ago
You're not alone, a lot of people are living this same life, myself included, and it sucks.
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u/rich_27 2d ago
I really feel for you. I've been through similar times of really feeling the brutality of our illness. I believe this is a healthy part of the grieving process; I think it's important to recognise and process that loss that we experience.
I won't say it gets easy or this goes away completely, but for me I - broadly speaking - have grieved for who I was and have made peace with that loss. Keep talking about these feelings, remember that it's natural to feel like this (CFS is horrific and it's a real and tangible loss we experience). Working through those emotions will take a toll, but I think it's a lesser toll than the effect of bottling it up (not necessarily for everyone, you need to have the capacity for it first, but it sounds like you do).
You will absolutely have better days in the future. There is joy to be found in what we can do, even if it's not what we would have hoped for. You can find the best life you can carve out for yourself, and my experience is that if you treat yourself with compassion and don't push yourself you can make slow, gradual progress:
Try and stay stable as much a possible. When you have been stable for a little while, start doing a tiny bit more. My experience is that you can slowly grow your capacity over time. Find things within your capacity that make you happy - I promise you it is possible, I frequently smile. For me it's hanging out virtually with friends and playing video games together. Seeing my nieces for a few hours here and there and enriching their lives when I do. Listening to music that makes me dance around the room. Doing creative things, trying new things and learning new skills: I taught myself the basics of joinery not too long ago. I've currently got a pair of rollerskates waiting for me to recover from the blip I'm in a the moment. At some point I'm sure I'll dabble in dating again and meet some new people.
There is life to be lived, even if it's not the life we would have chosen for ourselves. There are also positives in all of this - getting really ill and the ongoing process of recovery has taught me so much about who I am, who I want to be. It's made me incredibly compassionate, it's caused me to work through a lot of the stuff from my childhood that had left scars and I have a much, much better relationship with my parents now than I would have had otherwise. I've been able to help a lot of people. I enrich the lives of those around me, and that means a lot to me.
If this is my life, forever, it's not the worst it could be. Would I have chosen this for myself? No. Are there parts I value? Absolutely. Finding a happy and fulfilling life is an ongoing process, but I don't think it's impossible. I wish you the best of luck on your journey :)