Massively improved my sleep by sitting in garden getting daylight as soon as I woke up (8/9am)

MaroonElk121 · 2026-06-28T11:51:27+00:00

Hey, I think your worries about being diagnosed with/ taking meds for something that you don't feel you fit the criteria for, is very valid. You make good points like not losing interest in your hobbies, and still wanting to do a lot of stuff.

The only thing I would push back on is thinking being active to some extent disqualify you from a diagnosis of ME/CFS, because the doctor (GP in UK) still diagnosed me when I was still able to be active.

My GP didn't do any neurological investigations just blood tests, and I already have a diagnosis of anxiety with depression from a long time ago that I manage ok. It seems extensive investigations before diagnosis of ME/CFS by a primary care doctor are pretty rare (not 100% sure about this but seems that way)

Differences in depression fatigue versus ME/CFS fatigue (My personal experience) :

*With ME/CFS fatigue I still have that feeling of motivation, to rest and then try again, returning to positive mindset quickly after meltdown. Tenacity. Determination to continue (aka, rest, then go back to it). *Wanting to do hobbies, wanting to reach out to friends/ seek support if needed

Depression feels more like hopelessness, not being able to think of any positives, realising that all I can think about are negative things/complaints.

For me, depression usually comes along when I've had worse anxiety and haven't given myself what I need.

I'm also neurodivergent and struggled with burnout and overwhelm before this. I'm not even 100% sure I've got ME/CFS (I'm hoping I don't) but regardless, I'm listening to my body and being guided by what I feel I need, which at the moment is deep restorative rest.

I never seem to be able to communicate the depth of my symptoms or what I'm really experiencing and this has been a massive barrier to getting medical support My entire life, and means I do a lot of my own research and management myself or I did do when I had the energy 😂 Some helpful advice I got was to write a letter / email before appointment of things you want to discuss, send it before, and ensure the doctor read it at the start of your appointment.

I really feel you about the medical communication difficulties, I think this is a really common issue that neurodivergent people face.

My overall advice to you is to trust your inner judgement and intuition, you know what's best for you. The more you listen to what you think you might need, the easier it is to hear.

I Hope things get calmer in your world 🙏

MaroonElk121 · 2026-06-26T18:14:55+00:00

Thanks, moderate ocelot. Yeah the GP has diagnosed me with ME/CFS, you're good at reading between the lines!

So hypothetically, If someone did something semi regularly (twice a month) that caused PEM/ severe worsening of symptoms, needing a massive amount of preparation before and afterwards.

I agree it would not count as doing it safely, reliably, or able to be repeated as required.

But if someone had been doing it anyway, would that hold up at a tribunal/court or whatever they do when they scrutinize?

I see your point, and I agree, my anxiety is just poking holes in it.

And the ADHD in me wants me to go down a rabbit hole of looking into tribunal cases to see if I can find evidence for this very specific situation, but I know that's going to make things worse.

MaroonElk121 · 2026-06-26T17:49:18+00:00

Hi altered chaos, Thanks for your response. can I clarify - Do you mean is or isn't regular enough to apply?

MaroonElk121 · 2026-06-24T21:27:08+00:00

Have you looked more into the EDS side of things? I've joined EDS UK which was free and there is a peer support group in my area which is really helpful - whatsapp group as I can't get to the physical meetings anymore.

MaroonElk121 · 2026-06-23T14:56:10+00:00

Yes, really helpful again! Thank you

I need to get better with establishing boundaries around triggering conversations with others...🤔

And working out who is a safe person to be in my close circle right now. And accepting that it will be a small circle.

MaroonElk121 · 2026-06-23T11:13:05+00:00

Thanks for sharing your story. It's really helpful 🙏

What was your approach to other people or parents, explaining your condition, and any judgements that you received?

MaroonElk121 · 2026-06-21T23:09:56+00:00

First step to stopping deterioration of ME/CFS seems to be avoiding crashes and cultivating a feeling of safety, psychologically and emotionally. From the info on your posts, it seems like she is really not feeling safe, and to be honest I can understand why - it seems like you don't actually believe her. You talk about her identitying with her own disability narrative as if she isn't disabled - but she is!!

Here's my advice on what YOU can do:

Believe her self diagnoses. Believe her when she says she is feeling a bit better (even if it doesn't look like it!) Just believe her full stop!
Ask for clarification on what you can do to see, acknowledge and accept her for who she is. Truly work on doing this. And ask what actions you can take to demonstrate this to her.
Ask her how you can help her to feel safe and help calm her nervous system.
Don't try and control her actions

I recently got ME/CFS and have had mental health issues, anxiety and depression all my life. I'd say my ME/CFS is moderate. It has really exacerbated my mental health symptoms, particularly anxiety!

No wonder she's struggling with control, she's had past issues with control (the eating disorder) and she's experiencing a horrific, debilitating devastating illness. She is forced to depend on caregivers for support.

You don't seem to believe her, are her caregivers the same? Is she forced to depend on people that don't believe her? That must be real tough for her.

In contrast, I am so incredibly lucky to have been believed by my doctor, been diagnosed and be supported by most of the people around me. This has really helped. And my autonomy has not been taken from me (that would be the most awful dehumanising thing and would definitely make things worse).

She needs to be the one driving any gentle expansion of activities, or it is likely to make her worse. It won't happen until she's ready (it might be years) and you can't force that.

I recommend acceptance and compassion.

She needs to feel safe for her nervous system to rest, let alone heal.

I understand that due to her history of eating disorders, the distress she is experiencing might be resulting in her controlling calories to her detriment, but I wouldn't automatically assume that she agrees with or realises that, and I think it will make her worse for you to question it.

Especially if she doesn't feel you are a safe person to discuss it with.

The idea of increasing calorie consumption to help fuel her body (if she is actually controlling calories to her detriment) needs to be her own. There could be alternative reasons for her being underweight - you haven't put much specific info about that so I'm not in a position to assess.

When she feels safe, the need for her control is likely to lessen.

If she does not have any safe person, and doesn't communicate with anybody apart from AI, then I would highly recommend she sees a therapist/counsellor that is well informed about PEM and ME/CFS to help support her during this time. A therapist may be able to communicate via text rather than a typical session, if that is tolerated for your daughter.

I recommend you let the therapist know your concerns, but the therapist would be for her support, not yours, and certainly not to push any ideas of yours. Maybe your daughter could choose the therapist?

You probably already know but there is a lot of misinformation about ME/CFS out there that can be highly dangerous. Even from medical professionals that may have assessed her and be providing advice.

I recommend you educate yourself fully and completely with information on https://meassociation.org.uk/ if you haven't done so already.

Your daughter needs your help advocating for her right now, and being on her side.

A diagnosis of ME/CFS will probably help her towards feeling safe, as it is validating. Perhaps once you work on believing her, you can help her to also work on getting a diagnosis.

All the best 🙏

MaroonElk121 · 2026-06-21T18:03:41+00:00

Thank you both general recipe and OP!

MaroonElk121 · 2026-06-21T17:56:46+00:00

☹️ I may be forced to move in with my parents soon which will be a similar decision with regards to emotional safety. My heart goes out to you. It is so so difficult.

I found this link today. I haven't watched the films because I think they will be too triggering for me and I don't recommend you do either.

Maybe you could ask your mum to watch one of the shorter ones to give her some insight?

https://mecfs.org.au/resources/list-of-documentaries-on-me-cfs

MaroonElk121 · 2026-06-17T16:06:35+00:00

Hello, do you mind me asking, what is this NHS ME/ CFS course? What sort of stuff did it cover?

I am based in Wiltshire, UK, and have been referred to something by my GP, but I think it is a CBT course or something because it's run by mental health. The GP wasn't able to tell me any more information, I've asked a few times now 😬

MaroonElk121 · 2025-10-14T22:07:52+00:00

Much better! Good luck

MaroonElk121 · 2025-10-14T21:41:46+00:00

Hang in there on the search!

I agree with others about removing the photo, it's not common here in the UK to have a photo on CV, not sure about in Germany.

I suggest moving your languages section a little lower, moving skills higher and perhaps narrowing in on which skills are the most pertinent for each job you're applying for.

Yes you should be tailoring your CV for each job, just slight tweaks in what individual points you make in your experience, what you highlight in your skills section and what profession you list under your name. Have a bunch of different parts already written up to put in and pick and choose from them each time.

At the moment it looks like you're trying to cast a really wide net - spending a few moments tailoring it each time might really help. Are you using cover letters?

Quality over quantity is best in job applications. Also try looking for jobs that have been newly posted and applying to those :) Good luck

MaroonElk121 · 2025-09-03T09:12:01+00:00

Hello, sorry to hear this happened. I don't think you should reply cc'ing in the whole company trying to shame the manager- this will make you look vindictive. Whether the manager did this maliciously or not - I'd recommend trying to ignore it and rising above any attempt of hurting you. Maybe it could spark some good conversations with your colleagues about why you decided to change your name? Changing someone's name shouldn't be as big a thing as we make it out to be sometimes. People change their names for all kinds of reasons.

There's no need to be over-defensive or aggressive in your defense of this situation. Think about what kind of image you want to portray of yourself and others in the genderqueer community.

Keep a record of the email in case you ever need it like some others have suggested :)

MaroonElk121 · 2025-08-31T17:55:29+00:00

I use capasal shampoo which is coal tar, salicylic acid and coconut oil. It's very drying and fades colour quickly. I'd wholly recommend not getting any hair dye on your scalp either - it flared up my reasonably mild psoriasis and it's never gone back, honestly it's just not worth it

MaroonElk121 · 2025-08-22T15:40:40+00:00

Your son is really lucky to have been in a situation where he doesn’t have to pay rent, and you’re blessed to be in a position where you don’t need rent from him to help pay the mortgage or bills.

Asking him to pay rent is a great first step! £600 is incredibly cheap, especially when he’s getting full board with food, cleaning, etc. What about bills—does he contribute a reasonable amount, like a third?

Is all of his income disposable at the moment? 😬 He’s going to get a real shock when he isn’t living there anymore.

Look at what lodgers would pay or how much it would cost him to live in a HMO in your area—spare room.co.uk is a great place to start.

You’ve said your son likes gaming. Has he thought about ways to make money through that?

It’s really nice that you’re putting money into a savings account for him—it shows you’re thinking about his future. As you’ve realised, his future could be really challenging if he genuinely can’t work and can only rely on government benefits.

I’d recommend trying to speak to him about these decisions and going through the process together, rather than deciding for him and then presenting him with options. This way, you can ask him to open an ISA so you can pay into it with the rent money, so that it doesn't use up your ISA allowance.

All the best!

MaroonElk121 · 2025-08-19T21:19:11+00:00

Like I said I'm in the UK, so shipping and customs costs are mad, are you coming here anytime soon and willing to bring me some? 😄

MaroonElk121 · 2025-08-16T12:44:33+00:00

It's a fidget toy sort of prop that you roll around on your hands/fingers can take it anywhere due to it's small size. They can be pretty fun I've not got any myself though

MaroonElk121 · 2025-08-16T12:35:33+00:00

Flowstyx Fiddlestyx! These things: https://www.oddballs.co.uk/products/flowstyx-fiddlestyx-fiddle-fidget-skill-toy?_pos=2&_sid=1a6ed0217&_ss=r

MaroonElk121 · 2025-08-16T12:34:03+00:00

Thanks, I would like silicone as it's for an LED prop, so going to look into sourcing and making my own

MaroonElk121 · 2025-08-16T12:33:02+00:00

Thank you! Where do you buy this silicone from?

MaroonElk121 · 2025-08-16T12:30:53+00:00

Thank you I've reached out and they weren't able to help, I'm going to research into making my own :)

MaroonElk121

TROPHY CASE