Mamgu With M.E
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mamguwithme.bsky.social
Mamgu With M.E
@mamguwithme.bsky.social
Mild M.E 2010-15; Severe M.E 2015-date.
🏴󠁧󠁢󠁷󠁬󠁳󠁿From Bed, Beddingham
🎄🎅🎁Christmas lover. Advocado hater🥑 Coeliac & PCOS.
⏳️Patiently waiting for a cure or treatment for M.E⌛️
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✊️🫶
April 10, 2025 at 6:48 AM
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
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 .
media.tenor.com
March 21, 2025 at 1:07 PM
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
March 19, 2025 at 11:25 AM
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
March 19, 2025 at 11:25 AM
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
March 15, 2025 at 1:16 PM
.... 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.
March 15, 2025 at 1:07 PM
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...
March 15, 2025 at 1:07 PM
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!
March 10, 2025 at 11:34 AM
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
March 4, 2025 at 8:51 PM
Thanks😊x
March 4, 2025 at 8:47 PM
It's definitely helped having people who understand😊 It must have been so hard before🫂
March 4, 2025 at 6:57 PM
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😃❤️
March 4, 2025 at 6:12 PM
Thanks😊x
March 4, 2025 at 2:15 PM
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
March 4, 2025 at 12:47 PM
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
March 4, 2025 at 12:35 PM
Thanks in advance of any replies, incase I crash and can't reply x

#MyalgicEncephalomyelitis #MECFS #MillionsMissing #pwME #SevereME

4/4
March 4, 2025 at 12:15 PM
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
March 4, 2025 at 12:15 PM
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
March 4, 2025 at 12:15 PM
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.
February 7, 2025 at 11:37 AM