iiinova — where your digital self keeps evolving

Mamgu With M.E @mamguwithme.bsky.social · 21/07/2026

I'm not online much due to ill health but your perfectly, fitting meme is well worth a like

Mamgu With M.E @mamguwithme.bsky.social · 25/03/2026

10 years & counting of being housebound with #severeME and the @labouruk.bsky.social cause another delay for any kind of progression in support for pwME. People with bunions have better treatment plans than pwME & pwLC🤨 #mecfs #myalgicEncephalomyelitis #LongCovid #NHS #ChronicIllness

011

Mamgu With M.E @mamguwithme.bsky.social · 27/01/2026

Havent been strong enough to shower or wash my hair since Xmas Day & its killing me, mentally. Wash daily but cant use dry shampoo cos of allergies, so left with really greasy hair & sores on my scalp. I feel so dirty. This is not me! Fruck you M.E #MyalgicEncephalomyelitis #pwME #pwLC #LongCovid

130

Mamgu With M.E @mamguwithme.bsky.social · 27/01/2026

Yep, totally get this, sometimes, some plain Goats milk yoghurt is all I can do

010

Mamgu With M.E @mamguwithme.bsky.social · 30/06/2025

But according to the Simon Wessley et al, it's all in the mind! Tell me how infants & toddlers can think themselves ill, I'm waiting⏳️

041

Mamgu With M.E @mamguwithme.bsky.social · 12/05/2025

Struggling to post but want to for #MEAwarenessDay I'm dizzy, cant lift my heavy head, Ive full body pain & weakness but not 'fatigued', which is always used to describe #MyalgicEncephalomyelitis This is my daily life with #SevereME #Researchers & #Pharmaceuticals please help #MEAwarenessMonth

030

Mamgu With M.E @mamguwithme.bsky.social · 10/04/2025

Same here, cant even take paracetamol without a reaction🤦‍♀️ After 9yrs given up trying🫤 Tried starting at a lower dose, cutting up tablets & slow increase, as works for some, but to no avail, still had a reaction. Just know that you're not alone, there are quite a few #pwME & #pwLC who are the same✊️🫶

110

Mamgu With M.E @mamguwithme.bsky.social · 08/04/2025

Get up in the morning & I fight, all day long, fight, then go to bed & the hours that I dont sleep, fight. A mental fight to survive SevereME, some days are harder than others & today's a hard day but I'll get through it, as I have all the other bad days #pwME #MyalgicEncephalomyelitis #MEcfs #pwLC

050

Mamgu With M.E @mamguwithme.bsky.social · 21/03/2025

Yep, totally agree. Last 9yrs, Ive spent mnths at a time, lyin in bed with my eyes closed, 2 weak to lift my eyelids open but wide awake, my joints slipping out of position every few seconds cos my muscles are too weak to support my bones, yet, fatigue, headache&nausea seem an adequate symptom list

media.tenor.com

a woman is making a face and saying `` so frustrating '' with her hands .

Alt: a woman is making a face and saying `` so frustrating '' with her hands .

051

Mamgu With M.E @mamguwithme.bsky.social · 19/03/2025

many years and I had no issue with that because I was raised to believe that the tax we pay contributes to the welfare of the country and it's people. I detest having to claim benefits to support me, my pride has taken such a knock that I no longer feel good about myself, my pride & confidence 4/13

020

Mamgu With M.E @mamguwithme.bsky.social · 19/03/2025

24 hours. Labour's intended Benefits changes are extremely flawed and are clearly designed to make disabled/sick people's lives exceptionally difficult, we didn't ask for these illnesses & disabilities. I was a high earner, prior to #MyalgicEncephalomyelitis I paid high tax for many, 3/13

120

Mamgu With M.E @mamguwithme.bsky.social · 15/03/2025

After my M.E diagnosis it would always affect me when new #pwME came online, not wanting them to have the hellscape life I have. Then came Covid & #pwLC It broke my heart,so many people, #LongCovid should never have happened. #pwLC we see you, we hear you, we understand✊️🫶 #LongCovidAwarenessDay

0214

Mamgu With M.E @mamguwithme.bsky.social · 15/03/2025

I also question, why the assessor reports exactly the situation, ie 'completely bedbound, cant walk",the DWP then class this as, '0 points, CAN walk over 20mtrs'? Whats the point of us enduring these self worth, knocking assessments, when we're going to end up with a 'no' reply due to the DWP lies

072

Mamgu With M.E @mamguwithme.bsky.social · 15/03/2025

.... to answer with what she had been trained to fit. If your answer doesn't fit to their questions, they're stumped. So, the thought of these questions ahead, are so depleting of mental strength, energy, confidence, pride and self worth.

171

Mamgu With M.E @mamguwithme.bsky.social · 15/03/2025

In an assessment, the assessor asked, "when you shower do you have support", I replied, "I cant shower, so I dont know, Im completely bedbound", she then kept repeating the same question, on and on, "but if you could shower, would you have support", "what if you could shower?", trying to get me...

1121

Mamgu With M.E @mamguwithme.bsky.social · 10/03/2025

They've not just lost the votes from the disabled people, but their family and friends around them, who are witnessing their struggles, bad move Labour!

090

Mamgu With M.E @mamguwithme.bsky.social · 04/03/2025

Thank you and today has definitely taught me this is the place to be, you've all been so lovely and helpful. Thank you to you and everyone else❤️x

020

Mamgu With M.E @mamguwithme.bsky.social · 04/03/2025

It's definitely helped having people who understand😊 It must have been so hard before🫂

130

Mamgu With M.E @mamguwithme.bsky.social · 04/03/2025

Thanks and great idea, that's given me a more positive look at the Sickaversary, using it as a tool makes me feel so much better, thanks😃❤️

120

Mamgu With M.E @mamguwithme.bsky.social · 04/03/2025

I'd forgotten about meditation and breathwork, I used to do this in the beginning, I'll definitely get back to doing that, thanks and thanks for the offer of info but my brain struggles to absorb lengthy written text. You've been really helpful, thanks x

110

Mamgu With M.E @mamguwithme.bsky.social · 04/03/2025

Hi, thanks for your reply, unfortunately I cant do any exercise, I can only shower once a fortnight & I'm also highly intolerant to medications, so I'm extremely nervous about trying psychedelics but your post might help others who are struggling mentally like me, so thank you very much😊❤️ x

110

Mamgu With M.E @mamguwithme.bsky.social · 04/03/2025

Thanks in advance of any replies, incase I crash and can't reply x #MyalgicEncephalomyelitis #MECFS #MillionsMissing #pwME #SevereME 4/4

381

Mamgu With M.E @mamguwithme.bsky.social · 04/03/2025

missed out on sooo much life, I had so many plans for this time of my life. Having not mentally struggled, majorly (the odd down moment) with #MECFS I don't know how to deal with this, so any help or advice would be really appreciated. 3/4

281

Mamgu With M.E @mamguwithme.bsky.social · 04/03/2025

Any tips on how to deal with this would be gratefully received. I would like to point out, that I'm so grateful to still be here, after all this time of being severe, but the majority of my 40s and beginning of my 50s were spent either in bed or on the sofa which is next to my bed, I've 2/4

1102

Mamgu With M.E @mamguwithme.bsky.social · 04/03/2025

Hi all #pwME I'm struggling mentally, I'll have been bedbound/housebound for 10 years, next Xmas and its really affecting me. Usually, the Sickaversary passes me by with no effect, but 10 years, is such a long time to be missing out on life and no sign of a cure or treatment in the near future. 1/4

5264

Mamgu With M.E @mamguwithme.bsky.social · 07/02/2025

My son has developed coeliacs at the same age that I did. It has been a massive fear of mine that the M.E might be passed on also. He gets warned to over-rest whenever he's ill to try and prevent it😨 I'm so grateful for research like this.

010

Mamgu With M.E @mamguwithme.bsky.social · 20/01/2025

Today's main symptom is extreme nausea, yet still feel hungry, #mecfs really messes with the body #pwME #pwLC #MyalgicEncephalomyelitis

020

Mamgu With M.E @mamguwithme.bsky.social · 20/01/2025

They are horrible and frightening, hate them so much but then I detest PEM full stop, so, this symptom is hated just as much lol, take care

010

Mamgu With M.E @mamguwithme.bsky.social · 16/01/2025

Should add that my heart is healthy, been checked out, it's just a bad ME time and this is one of the symptoms I get

media.tenor.com

a red heart with a heartbeat line going through it

Alt: a red heart with a heartbeat line going through it

010

Mamgu With M.E @mamguwithme.bsky.social · 16/01/2025

Having a 'heart tired' #MyalgicEncephalomyelitis day, its where my heart feels like it's not got the strength for me to get out for bed, not even for the loo, it's a struggle but a day where I definitely listen to my body #scary #ListenToYourHeart #mecfs #pwME #pwLC

120

Mamgu With M.E @mamguwithme.bsky.social · 06/01/2025

It's daunting, hope you manage to find some kind of a solution. Hugs from Wales, UK

110

Mamgu With M.E @mamguwithme.bsky.social · 06/01/2025

😱 They're supposed to be supporting disabled people not ripping them off, so wrong 😠

110

Mamgu With M.E @mamguwithme.bsky.social · 06/01/2025

Don't know where you live but the Red Cross near us hires out mobile equipment including electric wheelchairs, we've never used the service, so don't know what it's like but thought give it a mention incase it helps. Really hoping you get to a better baseline real soon🤞

230

Mamgu With M.E @mamguwithme.bsky.social · 24/12/2024

🎅Happy Christmas to all #PwME and #pwLC Hope your day goes as well as it can with a #ChronicIllness🤶

020

Mamgu With M.E @mamguwithme.bsky.social · 06/12/2024

A WARNING for #pwME and #pwLC in Wales, mobile phone Emergency alerts have gone off this evening. As the storm crosses the country, the alerts may go off on your phones, I don't want anyone's illness getting worse from a shock or disturbed sleep. Batten down the hatches and take care all x

media.tenor.com

a black and white photo of a house with the words " it 's just a wee bit windy outside "

Alt: a black and white photo of a house with the words " it 's just a wee bit windy outside "

031