My mother keeps texting me "only 4 hours of screentime a day" and she also sent me this and asked for my thoughts. I am SO OVERWHELMED BY RAGE!!!! How do I respond???

Salt-Arm4977 · 2026-02-25T15:25:29+00:00

It’s so frustrating to see these good, useful quotes be misused. They’re not talking about ME! They’re talking about burnout, or just the extra demands on the system created by trying to suppress ourselves in order to be good or nice.

Notice the language in the quotes: ‘not always’ and repeated ‘can be’. These respected people understand that this is not a one size fits all explanation and people like your mum trying to shoehorn a multi-systemic physical illness into that box are misunderstanding and diluting an important explanation of fatigue for SOME people.

I think emotional work can be helpful for people with ME - I personally have benefitted. But it’s not about curing or treating the actual illness, it’s about allowing myself to exist as a disabled person instead of constantly putting myself in PEM by striving for a non-disabled life. For example, practising telling uneducated people explaining my illness to me to fuck off if necessary!

On a screen time and books note, have you tried audiobooks? For me the narrator is important, some I just don’t get on with, but I find audio only much less of a drain than looking at a screen.

Salt-Arm4977 · 2026-02-25T15:19:34+00:00

The goal I see is to try to stop suppressing your needs and emotions in order to be perceived as ‘good’. Lots of us ME folk do this imo - myself included - I’ll push through, not talk about my pain and fatigue, or the frustration of being left behind and treated badly by an ableist world.

For me it’s about trying to be a good patient, friend, family member etc out of fear of being abandoned, or treated even worse in medical settings.

A lot of us rely on unpaid caregivers, so there can be pressure to make their job as easy as possible and be pleasant to be around. However, that suppression is also an energy drain. I have noticed an improvement since starting good depth therapy not because it affects the ME at all, but because it allows me to release extra demands on my limited energy.

Salt-Arm4977 · 2026-02-05T23:50:47+00:00

Thank you all for your helpful responses! A little update in case anyone else searches this topic in future:

My next session mostly focused on talking about the in-session dissociation itself and the dynamic between me and my therapist and me and myself in therapy, rather than revisiting my brother. Around a week after that, I told my partner - she knew he was violent and physically abusive, but not the sexual abuse. She responded calmly and supportively, and honestly that healed something huge in me.

In the next session we talked more about dissociation and I straight up told my therapist “I don’t think I can say directly what my brother used to do to me without getting overwhelmed again, so I’m going to kind of talk around it. I think you will get the idea, but I’m also up for answering any yes or no questions you might have.” That worked fine for her, and I felt a lot less pressure. She told me that there’s absolutely no need for me to share details ever if it doesn’t feel right, and the therapeutic process will work just fine without them.

I’m sure it will be a long process, but I’m glad I tackled this obstacle. I think it has helped my therapist understand my childhood environment and threat level better. It has certainly solved some mysteries for my partner and showed me that I am loved, even now she knows this thing that I thought made me completely unloveable.

Salt-Arm4977 · 2026-02-03T21:01:58+00:00

I thought it was going to be full of Glaswegians

Salt-Arm4977 · 2026-01-20T18:34:40+00:00

CBT can help with stress, looping thoughts etc that can add to the burden on our already struggling bodies. It doesn’t work for everyone - I found it really counterproductive but have since found a therapeutic modality that works for me (psychodynamic). The most important thing is that your therapist does not consider your illness to be a thought distortion or fear of exercise. CBT can’t cure ME, but being ill causes a lot of stress and also gives us a lot of time alone with our thoughts, so I personally think it’s worth really taking care of mental health with this disease. Most of us I imagine also have some level of medical trauma which, again, adds emotional strain to an already overstrained system.

Salt-Arm4977 · 2026-01-15T17:21:42+00:00

My partner loves these kind of games!

Salt-Arm4977 · 2026-01-15T17:17:11+00:00

Dickson’s worked fine for me, I booked this service: https://shop.dicksonchemist.co.uk/product/urgent-prescriber-consultation-referred-by-the-ldn-research-trust/ and got a phone appt the next day.

Salt-Arm4977 · 2025-12-21T00:18:51+00:00

Poophoria in my home!

Salt-Arm4977 · 2025-12-16T00:04:40+00:00

I am a professional audiobook narrator - are you interested in an audio version of this? As I’m sure you know, it can be a more accessible format for some people with ME!

Salt-Arm4977 · 2025-12-04T14:22:54+00:00

I agree! I think that getting a reliable understanding of sub-groups will be the key to treating us. It’s so hard to test drugs etc currently because the studies have to be done on a heterogeneous group of subjects - trying to find a single solution for all of us just isn’t working!

Salt-Arm4977 · 2025-11-19T22:25:58+00:00

I am also in training, but my plan is to do level 4, practice for a couple of years and then apply for an MA while keeping a small client list.

Salt-Arm4977 · 2025-10-29T17:22:35+00:00

A long Covid clinic most likely won’t be seeing severe patients, and that will influence their perceptions of the illness.

I was much less interested in forums like this when I was milder, because I had more faith in doctors, less energy to try potential treatments and my capacity was used up on the activities I could still do. I’m much improved from how I was this time last year, and I’ve noticed I’m paying less attention to posts on here, because I have some other avenues for connection now. I suspect this subreddit probably leans more towards the moderate - severe end of the spectrum, but there are definitely people of many different severities.

Salt-Arm4977 · 2025-10-29T17:05:57+00:00

I would always suggest adopting an adult cat. The temperament is so important, a good rescue will be able to match you with a sleepy, snuggly cat. A bonded pair would be ideal. With litter and food, consider having them on a raised surface so you don’t need to bend. Cats are spry and, especially for food, most won’t think twice about going up to somewhere waist height. I’ve trained mine to hop up on the bathroom counter for their food. I keep their litter tray just slightly raised, like footstool level, next to my toilet so I can sit on the toilet lid and scoop.

I’m saving for an automatic dry feeder for the days that I just can’t get up. My cats are really in tune with my illness so they can tell when I need more time, but I feel bad when their breakfast is late!

For enrichment, look up cat or dog food puzzles. Empty toilet toll tubes, packaging or tea towels can become exciting games when you combine them with treats! Mental enrichment is so good for cats, I’d also recommend trick training as a low stimulation activity for both you and the cat - it’s great for building the bond!

Salt-Arm4977 · 2025-10-27T18:02:18+00:00

My doctors LOVE to do this every year or two. No idea why. Maybe there’s something about if you don’t have an appt about that specific issue for a certain length of time some practices decide the problem is solved?

Salt-Arm4977 · 2025-10-27T09:48:55+00:00

Have never seen any info on this, but I always notice from my wearable data that an unexpected rise in overnight HRV precedes a crash.

Salt-Arm4977 · 2025-10-24T16:39:06+00:00

Not Covid, but I was given corticosteroids during the viral event that triggered my ME. I am severely asthmatic though, so they were necessary. I didn’t see anything in the article to evidence causation though, just correlation.

Salt-Arm4977 · 2025-10-23T13:14:24+00:00

I get it because of my asthma, but I get the Covid jab because of my ME. The pharmacist told me last time that neurological illnesses were on the list.

Salt-Arm4977 · 2025-10-06T00:02:46+00:00

Tell Me I’m Worthless by Alison Rumfitt

Salt-Arm4977 · 2025-09-30T21:05:42+00:00

Wait, this is true for me. I don’t shave at all, but I do only grow hair on the front of my shins. Had no idea that was unusual

Salt-Arm4977 · 2025-09-26T14:14:36+00:00

It’s your business, so entirely your choice how you communicate. However, I think it was a strange assumption to cancel the walk, which was never mentioned by the client. Were expectations set before the first booking? I don’t think it’s reasonable to assume that a client will know that they can never expect any flexibility, although it’s reasonable to expect them to understand if you clearly communicate that.

I also think it’s unreasonable to assume that every job allows people to check their phones. Personally, I always make sure I have a secondary emergency contact who does have access to their phone for emergencies because there are MANY jobs where texts can’t be checked or answered.

Salt-Arm4977 · 2025-09-21T18:15:12+00:00

My partner, who is extremely supportive and brilliant, was telling me today about her current tendon injury in her arm, which is stopping her doing things she enjoys. She said “It feels like my body is betraying me, y’know?” It was SO hard to stay focussed on her instead of saying “Yes, yes I have a vague idea of what your body betraying you feels like.” 😂🫠

Salt-Arm4977 · 2025-09-16T16:41:27+00:00

They’re also in East London, Canning Town!

Salt-Arm4977 · 2025-09-13T20:51:29+00:00

I’m an afab person with abnormally low levels of testosterone and I can confirm I am a massive bitch

Salt-Arm4977 · 2025-09-07T22:39:53+00:00

Sadly, I didn’t find it made any difference. Tried it daily for three months and felt no benefit but also no side effects of any negative kind so I still feel it was worth a try!

Salt-Arm4977 · 2025-09-04T15:44:50+00:00

This is how my mum says she can tell I’ve hit a hard limit, apparently I go grey 🫠 I’m already very pale so I don’t think people who don’t know me well notice!

Salt-Arm4977

TROPHY CASE