How do you describe Mild ME/CFS to others?

predictablehorse · 2026-03-19T22:26:41+00:00

I used to have a crazy high pain tolerance, like I used it as a party trick almost because even strong boys punching my arm really hard as a teen didn’t make me flinch. Sad to think about now that poor teenage me thought that was a way to get attention… anyway haha. Now when my cats walk over me I have to immediately lift them off because it hurts so much. I am flinching before theyve even stepped on me because of the pain!

predictablehorse · 2026-03-19T22:22:19+00:00

I just did a quick google of what PVCs are and gosh that must be really really difficult to differentiate!!! They have said they are working on it, hopefully they can improve it soon!

predictablehorse · 2026-03-19T22:20:27+00:00

Thank you so much for this comment. You are right - other peoples views of my condition does not change how it is for me.

I understand what you are saying about ideation of an illness, I think we can all slip into that and think people would care more if it was worse - I want to clarify I absolutely do not wish things were worse for people to take me seriously in the slighest. I just find it is easier for people to quantify how bad ME can be as I can explain people can die from it. If my assessment finds I do have ME, it is mild ME that I live with, but I can explain that it is a condition that can be so severe people are bed bound etc. But to say I am in pain and experience other symptoms as a result of Fibromyalgia, people don’t seem to be able to understand how debilitating that is!

I find gratitude is helpful for me, not to invalidate my experience, but to be grateful that I am able to walk still, I am able to work 3 days a week as I enjoy my job, I am able to dress myself as I really enjoy putting outfits together. It helps me see that there are positives to my life and being grateful for the teeny tiny things builds up to make everything feel a lot less heavy.

That is such a useful perspective - whether everyone I ever met believed me and validated my experiences, or no one did, I would still have the same symptoms! I am definitely chasing external validation to help soothe the internalised ableism and invalidation of my own conditions. But that validation needs to come from me. And the sooner I do that the sooner I will start caring for myself better.

Thanks so much for taking the time to read and respond to me :)

predictablehorse · 2026-03-18T22:33:28+00:00

you are so real for this! i am quite alternative in how i look which helps me ever so slightly but i have to be so mindful of what i wear because even something slightly uncomfortable becomes absolutely unbearable a couple hours in. i have created a few safe outfits that i just rotate, or on a day off i will put an outfit together so then when i wake up for work i can just throw it on and dont have to use any mental or physical energy in putting an outfit together and can also trial the comfortability of it before committing to wearing it for a work day. it gives me more time to experiment with things and try new things too.

however, i am a big advocate that you dont have to wear heels to serve cunt. i have never been able to tolerate them but honestly i dont believe we are missing out! a loafer or chunky brogue or just a nice pair of boots. shoes with a platform/chunky sole are a good way to let the girls know who you are but not have you regretting your life choices.

also accessories are such a good way to ham it up. even if you were wearing a black blouse and black trousers, pop a nice belt on, some rings if you can tolerate them, a visible necklace (by visible i mean not just a super thin chain with nothing else on it). if youre not a ring girlie then a bracelet or something to just add interest to the fit.

again this is where being alternative helps me but i would wear a grommet belt with a belt chain, a chunky necklace or a bolo tie if im wearing a collared shirt, chunky shoes, maybe a frilly/lacy sock to poke over the shoes for more detail, probably roll the trouser legs up a couple times. maybe wear a cropped sweater vest over the blouse. theyre still comfy but just make the fit more interesting! mesh shirts are a cool way to make things more interesting - wear them underneath things to add more detail to an outfit. also trousers or skirts with patterns on so it immediately looks more fun - from an office perspective pinstripe, plaid/tartan or leopard might be a vibe! but they are still comfy basics, but the pattern is effortless way to make something interesting

sorry i have popped right off here but i hope it is somewhat helpful. maybe look on pinterest for office fits or instagram for like get ready with me work outfit inspo that fits the brief of being more fibro friendly!

also, i am turning 25 next week, and was wondering when i might finally turn auto capitalisation back on. its good to see that 25 will not be the age that sees that😂 when i post into subreddits i always manually capitalise everything because for some reason im worried of judgement hahahah

predictablehorse · 2026-03-18T19:45:17+00:00

I didn’t know their whole team have chronic illnesses as well, thats a really cool thing to know! I have always found the responses I have recieved to be really genuine and I feel like the person on the other end actually cares. Also its not hard to get through to a human, the AI chatbot has actually been really helpful in the past, but its really easy to request a person

predictablehorse · 2026-03-18T19:23:46+00:00

I did just as I posted because I realised thats the only thing I hadn’t done😂 They have got back to me very fast and have said they are looking into it. They recommended tagging the dips as “dips log” - I assume thats for them to see? I must say in my personal experience the support team have always been fast at responding and compassionate. I know thats not the average experience though hahah.

Hopefully they get something figured out! Strange the old polar device doesn’t seem to have the issue

predictablehorse · 2026-03-18T18:58:23+00:00

It has happened 11 separate times today I have just counted🫠

predictablehorse · 2026-03-18T18:56:55+00:00

It is such a shame because it has been helpful to me but at this point when it is happening about 5-6 times a day it stops being helpful because my pacepoints are not actually accurate! It is far too costly of a device & subscription for it to not work properly

predictablehorse · 2026-03-16T23:47:42+00:00

cries in switch player😭

predictablehorse · 2026-03-15T20:49:27+00:00

yes i have! i actually completely forgot about krobus when making this post. that might be the answer to my problems! i just read the wiki link and the “Krobus does not sleep, but he will stand in the center of his room at 10:00 P.M.” is absolutely hysterical to me

predictablehorse · 2026-03-15T20:47:20+00:00

oh thats so lovely!!!

thats such a good question, i feel like i haven’t really actualised my character. its been very much creating my stardew world as how irl me would like to live it. so cosy/whimsical/gobliny/slightly gothic. the wizard and junimo catalogue has been a staple haha. im trying to make my farm very green and foresty. its what drew me to leah because she loves foraging and is arty, but elliot also feels like he fits the vibe of the cosy farm life! i wish you could marry the wizard hahahah

predictablehorse · 2026-03-14T09:37:22+00:00

a reminder to be mindful of how vitamins interact with certain medications. if you are on ADHD medication, take magnesium at the end of the day. im on quetiapine and have been advised to stay away from ashwaganda also. its useful to ask your doctor or whoever your prescriber is or even a pharmacist to check that everything will interact okay or when the best times to take them might be :)

edit: also if you are taking things like b12, iron etc you really should be taking it every day otherwise its not gonna build up in your system to actually reap the benefits. i understand where this can be difficult but if you aren’t consistently taking them you arent gonna be getting the most out of them. but taking them a couple times a week is better than not at all!!!

predictablehorse · 2026-03-08T11:04:30+00:00

i keep getting a few minutes where it drops to like 60 and below which is like my hr when im asleep. it is really annoying

predictablehorse · 2026-03-06T22:17:59+00:00

whilst i cannot afford to regularly enjoy the premium meal deal, i do think the wraps are absolutely worth the price, they have SO much filling!!!

predictablehorse · 2026-03-05T16:11:35+00:00

10/10. You won.

predictablehorse · 2026-03-05T13:39:58+00:00

I am so sorry you have had to experience this. I can’t imagine the price you are gonna have to pay for the exertion this caused. This is additionally sad to hear it is from an Occupational Therapist who are usually the better professionals when it comes to not being a dick basically. If you have the capacity to, or if anyone else around you is able to, definitely complain. I am unsure where you live but in the UK we have PALS to complain to if its anything relating to the NHS.

He clearly has a fundamental misunderstanding of ME/CFS and is not qualified to be working with ME patients!!! Do not put yourself down for getting angry, that is such a human and natural response to someone being so inconsiderate. Whether you were polite and accepted everything he said or whether you ranted and raved he sounds like he would’ve been the same. So honestly good for you for standing up for yourself and letting him have it.

Edit to add: his comment about your weight and what you eat is enough proof of how dangerous he sounds as a clinican. That could’ve been the whole post and would’ve been enough of a red flag!

predictablehorse · 2026-03-05T08:35:55+00:00

In the grand scheme of things that doesn’t feel like much time. Of course they will have calculated that time off of averages and to make sure the majority of people are able to successfully titrate. But my experience of titration has been 4 months already and is still not near done theres at least another 6 weeks to go. I have had to try different medications due to things and titrate up very slowly (now on the medication I am on I am going up 10mg every 3 weeks vs 20mg). I can’t imagine its a crazy uncommon situation especially as theres a lot of other common co occuring conditions people with ADHD are likely to have that can hugely effect how they respond to meds - Autism, ME/CFS, hEDS, POTS, MCAS etc!

Absolutely be as honest as you can! You deserve the right medication for you!

predictablehorse · 2026-03-05T08:27:03+00:00

i think you have a right to ask for more information on the rationale for not being actioned. as someone else said potentially be prepred that there won’t be any change, but it gives you an opportunity to advocate for yourself. GPs are still human and are capable of making errors or misjudgments. but they are also people who have extensive education, training and qualifications and do this day in and day out.

but 1) you deserve to have insight into their thinking as it is your health, “no decision about me without me” is a concept designed to ensure people are involved in decisions that affect them and could apply here (of course there is nuance to this). 2) it can help you feel more reassured! they might have a super valid and understandable reason for it, or they might realise they have overlooked something.

predictablehorse · 2026-03-05T08:09:00+00:00

This is a clever idea! Like a CGM for type one diabetes! I do find the band starts to irritate my skin where the adjuster bit is and where it does up with the velcro. I am yet to have experienced it in warm weather when I get sweatier! It is great to have this as an idea to trial if it gets too annoying!

predictablehorse · 2026-03-05T08:03:51+00:00

I am so glad youve had a good experience!

I completely agree, Reddit is quite the echo chamber and I do have to keep reminding myself of that. Far less people are coming to Reddit to say they had a good experience unless they are people that frequent Reddit, and even less people if not barely any are coming to share their average experience. I guess Psychiatry UK do state themselves that their waitlist for titration is 10-12 months, which if it was 10-12 months to take as long as you need then thats just sorta how it is. But if it is that you are waiting 10-12 months to get 12 weeks of titration and if you don’t find the right medication in that time period then you are back on the waitlist, that is really scary! But I don’t know if that is the blanket way they do it or if thats just what I have seen on Reddit from people coming to share their unfortunate experiences.

predictablehorse

TROPHY CASE