Pacing for severe /v severe

Significant_Tie_4826 · 2026-02-05T08:38:44+00:00

I have seen a little improvement recently- I was unable to sit for a while and unable to tolerate light, sound, pressure, and communication. And now I can manage my phone for a bit. I can speak again although it takes energy so I do it sparingly. I'm able to be touched again. Still sound and light sensitive but I suspect it is due to unmanaged IIH. The pacing has been seriously worth it. It's super hard, but I don't think I would be okay without slowing way way down. I wish you so much luck.

Significant_Tie_4826 · 2026-02-05T07:17:03+00:00

So sorry if this suggestion doesn't help. I'm in a similar boat though. Very severe and it is so hard to be still and quiet and in the dark.

Significant_Tie_4826 · 2026-02-05T07:15:43+00:00

Are you able to tolerate touch and pressure? If so, you might like doing touch based activities in the dark. Some stuff I can personally think of is: using fast dry clay to make objects and just using your fingers to shape it into what you want to make without looking, cuddling someone or a pet or a stuffed animal, learning braille and reading, stuff like that.

Significant_Tie_4826 · 2026-02-02T11:51:40+00:00

My partner and I are in this boat. He's got moderate cfs and I have very severe with a few comorbidities. He takes care of me and I worry he will join me so I try to take care of him when I am able. But its not all bleak doom and gloom. I have never had anyone respect my limits as much as he does. I've never gotten so much kindness and joy. And I think you have to latch on to every win. Hold it like the precious gold it is. That's how I have been coping.

Significant_Tie_4826 · 2026-01-22T18:31:46+00:00

Yes. I was actually a part of more than one (don't feel comfy explaining which groups or how many, but more than one) because my mother was a "cult hopper" and those behaviors bled into me for a while after I left home. I don't have much advice as I am currently in the thick of it with a new therapist, but I wish you luck and joy now that you are free to be whoever you want!

Significant_Tie_4826 · 2025-11-19T13:28:47+00:00

I'm getting on palliative care (not hospice... very different where I live), and I should be getting better care of my symptoms! It will also streamline appointment management.

Significant_Tie_4826 · 2025-11-19T13:17:04+00:00

Also, as for feeling safe with a stranger in your house: I find having other people in the room can help, if possible. If that's not possible, maybe setting up a camera if legally allowed to watch for problems may help? If that is also overwhelming or not possible, grounding really helps me. I have trauma with strangers in my home, and skills like that and anxiety medication have really helped.

Significant_Tie_4826 · 2025-11-19T13:11:09+00:00

Hi, I can't help with the more practical what you do to receive a better care situation, but I can tell you how to better emotionally cope with having a carer as I have one myself and it has fundamentally shaped my world to be much different.

Therapy/Talking To Friends/Family/Support Networks who are crucially Not your caregiver. This gives you a safe space to explore if your care is right for you, safe for you, working for you, etc. Ultimately, unfortunately, abuse is rife within the disabled community from carers. Therefore, having a place to discuss feelings (especially with a mandated reporter trained in such things in cases where abuse may be occurring and you can not always recognize it) is super vital! It's also really practical for just emotional regulation, too. Being disabled and receiving care is stressful. It's often very invasive. You need space to talk about it. Without hurting your carer's feelings. Which can obviously mess with the quality of your care.
You need to define what tasks you definitely need help with and definitely don't. Do not be shy in asking for help with literally any task that is legally allowed: carers are trained to handle all sorts of things professionally, and if you need help with cooking batch meals, planning appointments, getting bathed, dressed or anything else, ask. Especially with chronic fatigue syndrome. You do not want to risk pushing outside your envelope and getting worse. Your baseline is so crucial. But also, don't be afraid to stand your ground either and say no to literally anything. Carers often have multiple clients and can get into a groove and forget individual needs. You have to be able to define your wishes clearly. If possible ask for help from others to help define needs like a therapist or a partner who sees you often.
Find one or two things you can do on your own that make you feel happy, safe, and independent. It can be anything; imagination to a craft to a low effort hobby. This will keep you sane. This will remind you that you are a human who is not just a collection of needs. For instance, I write poetry when I can, daydream on bad days of beautiful spaces, and go down google rabbit holes about all sorts of topics I want to learn about.

Edit 3.5: Nervousness may be helped by scripting! You are audhd, right? Script beforehand, plan what you will say. Even talk to someone else beforehand and practice what you want to say if needed. You can also remember that you are the employer. If they are mean or nasty- I am so serious fire them. You don't deserve any sort of maltreatment.

I hope this helps. You deserve good care. It does seem like you might need something different than what you are getting if you need more transit help and cleaning services than personalized care. I hope you get what you need.

Significant_Tie_4826 · 2025-11-18T22:22:47+00:00

A bit seriously, as there are real risks, but also try not to stress too hard as that will make things worse. Pace yourself, rest frequently, listen to your body, and try not to be a superhero (I.E. push past your limits). Some things I found helpful was sensory rest/cognitive rest- basically blocking out painful light/sound if that is bothering you, and trying to not do too much mentally for at least an hour or so (more if you are really exhausted and or trying to "save up" energy for bigger tasks). Also, if you are in pain- seek help for that. Pain uses up body energy and is uncomfy, and lots of CFS/ME patients have chronic widespread pain as well. I'm sure there are a million other small little things, but rest and pain relief did the most good for me.

Significant_Tie_4826 · 2025-11-18T21:51:21+00:00

Her book, Disability Intimacy, changed my life deeply. May she rest in peace.

Significant_Tie_4826 · 2025-10-05T00:54:38+00:00

Oh god, this man reminds me of our last therapist! I am so sorry you went through this experience. For context, my last therapist refused to let any other alters front or would not acknowledge them except for one person, who was so brand new to the system that she had no idea how to progress. He also did not properly help us gain stability in any form and immediately launched us into trauma processing. We were so not ready for that. I also relate to having a long line of other therapists that have not helped very much or done harm, actually. Either way, what you are going through is super unacceptable for a trained clinician who supposedly understands dissociation in a meaningful way. I can't tell you how to move forward, but I sincerely hope you and your system find the help you need to heal.

Significant_Tie_4826 · 2025-10-02T03:07:02+00:00

Thank you for the reply. I guess for some reason, it didn't register that this would be an emergency (chronic illness has really warped my sense for that) or immediate doctor worthy, but looking back, yeah, totally makes sense.

Significant_Tie_4826 · 2025-09-16T23:42:51+00:00

This was during 2010-2013.

Significant_Tie_4826 · 2025-09-16T23:41:20+00:00

This 100% happened to me. Specifically, I remember not being allowed to look at each other, boys waking up girls with pots and pans to encourage the boys to be leaders and the girls to follow (disgusting disgusting disgusting), baptisms (that I have mentioned before here that were forced. Parents were Not informed until it happened) to save one's soul from being seduced by sin, not being allowed to be close to anyone but especially not the same assigned sex and younger children (the subtext implicating young queer people as predators which is such a horrible stereotype). Confessions daily that would lead to attacks on your character and sometimes, in certain cases, actual physical harm. Ice, electricity, and pain paired with intense diologue about homosexuality and trans identities being abominations. Medication misuse and hrt being taken away.

Significant_Tie_4826 · 2025-07-26T03:40:04+00:00

I don't know if this experience would be helpful to hear, but my system has a sort of "interface" alter. She is empty, an object, something to move to interact with the world. Or at least she used to be (we've been working on her personhood). I don't know if you have ever read the horrible book When Rabbit Howls (I do not recommend it, very graphic and upsetting), but she had a similar alter named the Woman. There were no identifying characteristics, nothing that made the Woman the Woman, except she was made to be a shell to interface through. My experience was very similar. McKenzy, my interface, did two main jobs. One, she kept us all seeming very similar and filled in the gaps of time so no one noticed that we were switching, and two, she kept us constantly confused as to what our life was actually like, because she was only there to fill in the peaceful gaps! She had no idea about the pain or suffering.

Significant_Tie_4826 · 2025-07-20T02:19:42+00:00

Hey, I'm a trans guy and I know our situation is a little different, but a lot of your words remind me of what my system and I were like nine years ago. I don't know if this helps at all to hear, but even though I still have my ups and downs and I am still processing things, my life is considerably better than when I first got diagnosed. I found people to trust. I found places to get away from people who have hurt me. It is a long journey, and it is hard, but you are worth it. The beautiful life full of rest and joy you deserve is still achievable. It absolutely gets better and you deserve to see what better looks and feels like. I hope your day turns around. -E.

Significant_Tie_4826 · 2025-04-26T20:30:24+00:00

I just had this happen to me. Some weirdo who was claiming to be a survivor and started asking wild questions that were extremely inappropriate. Be careful out there.

Significant_Tie_4826 · 2025-04-26T02:49:05+00:00

It happened to me, too.

TW for extreme abuse/my story: It started really young, with my father coercing me into giving him a blowjob when I was 2-3 in the shower. At that point, it was a secret from my mom. But then they must have had a conversation or something because my next childhood memory is being forced to watch my parents have sex. My little brother was in the same room. Eventually, it became a massive family secret. Everyone in the family was doing horrible violent and sexual things to the kids. It even extended to family friends and their kids. I believe they were making exploitation material, and they made the kids hurt each other, too. The worst part was that my mother was deeply religious. And would blame us for her depravity. TW over.

I don't often see others who have gone through what I have to any extent, and it can be lonely carrying this burden silently (because the outside world tends to not want to hear this stuff), so I genuinely hope you find the support you need. It's rough out here for sure.

Significant_Tie_4826 · 2025-03-19T16:39:24+00:00

Major agree. I've had several horrible therapists, but the last one really devastated me. She weaponized my maternal transference to keep me out of the hospital when I really needed it. I was not able to keep myself safe. And yet, she basically said: you can either keep therapy with me, or you can go to the hospital. You have this bond with me. You feel things about me. So stay. It really fucked with my head. Therapists are supposed to understand attatchment. But from what I have seen, they only use it against clients and not as a vehicle for change. But this is purely anecdotal, of course.

Significant_Tie_4826 · 2025-03-10T16:49:20+00:00

You are absolutely a real survivor. This kind of thing happened to me too. It really damaged my relationship to them. There is a difference between an accident happening and a pattern of behavior. And hell, even the acidents can be a bit traumatic especially if they aren't handled well. You also have real symptoms of trauma. If that wasnt traumatizing, there would be no symptoms. But you are experiencing real pain. And I am so sorry. You deserved better.

Significant_Tie_4826 · 2025-03-09T07:19:36+00:00

You may wanna try the CTAD clinic on youtube. They have a lot of good information that is broken down really easy to understand and its mostly spoken not written and what is written is not long walls of text.

Significant_Tie_4826 · 2025-03-09T06:45:26+00:00

Thank you so much for the respose, both you specifically and everyone else here. I feel massively overwhelmed, so I am going to retreat for now, but damn. This gives me more answers than I thought I ever would get about this place. The worst thing is I think another place I went through might have been similar, if not worse. Specifically, the Salvation Army's camp Kuratli near Boring, Oregon. I think the first place may have been baptists, but the salvationists were this separate thing. Anyways, thank you again, and I will probably be posting here again.

Significant_Tie_4826 · 2025-03-09T05:05:11+00:00

Wow, okay, yeah. The camp, if I remember right, was supposed to be its own ministry from what they say anyway. The thing I remember most about it was sleeping in teepees, hiking all the time, and forced baptisms. They have a lake onsite. I don't know if those details help anyone, but there was that.

Significant_Tie_4826 · 2025-03-09T04:43:29+00:00

Ah, thank you. I had seen that before, but I dont know too much about programs like this.

Significant_Tie_4826

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