"My whole life just disappeared…"
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- Опубліковано 9 лип 2024
- Millie shares her story living with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a serious, often life-long illness that affects many body systems.
Follow Millie on TikTok at @cfs_millie and Instagram @chronicfatigue_millie.
#mecfs #chronicfatiguesyndrome #longcovid
I relate a lot to your story! I got mononucleosis twice between age 14 and 16 and that's how I got ME. It destroyed my life. I wasn't able to finish high school normally. I had it mild until I was 25 so I kept pushing and pushing and I miraculously managed to move to Japan but, then the big earthquake & tsunami happened and my grandma got diagnosed with cancer, I also think I was exposed to mold and the stress caused by all of that just made my condition worsen. I ended up having to move back to Canada and I couldn't hold my remote job or even study part-time online anymore. I'm now 39, with severe ME and I've lost 95% of my social circle/life, I'm incredibly isolated... the pandemic doesn't help either. I almost only go out for medical appointments nowadays. I still mask everywhere and people treat me like a hypocondriac... even people close to me, which makes me feel even more alone. Also, I only got officially diagnosed in 2020 after years of being invalidated by multiple doctors and psychiatrists. Thank you for sharing your story! The world needs to hear us!!!
Your story about swimming and losing that joy and sport is one of the changes I still struggle with as well. For me, volleyball and cycling were my favorite activities and then suddenly it all disappeared. Luckily, I was 19 when it happened and got diagnosed years later at the age of 23. So I had a little bit of time, which still feels to short. Hopefully in the future OMF and Norway will make such progress that others won't have to go through the same struggle of Doctors not listening and not having any idea how to help.
Like you Millie, I have a case of M.E. that is not as severe as so many have. Like you, and like you on this video, I appear to be perfectly healthy, energetic, articulate and doing well a lot of the time. What people DON'T SEE are the many days of the month that I am in bed with a horrible migraine that was triggered by a strong fragrance or heat, or loud noise, or stress. It's what I call "fallout". Sometimes it takes a day or two to crash, sometimes it's almost immediate. It's this unpredictability, no pattern, varying symptoms from patient to patient that has made it so hard for ALL OF US: the sufferers, the medical community, our friends and loved ones etc. etc. It is such a monster that changes shape. Thank you for sharing this and I am sorry that you suffer too. We must stay hopeful that we can someday get our lives back. Thanks to the Open Medicine Foundation, Bateman Horne Center, Stanford University and many others for being persistent in their efforts to find a treatment or a cure. Stay Strong Millie.
OMF has given me hope, too! 🙏
I can't say how much I appreciate their openness, and the information they are sharing on UA-cam!
I'm living in a country that has little knowledge about ME, and no information - OMF has been my only reliable source of information and education about this disease.
I wish more people understood how skilled these scientists are, and how unusual and special this non-profit research is, with a team of scientists from different parts of the world, cooperating on so many levels to solve ME as soon as possible.
All honor to OMF! 🙏🌹
And I hope that we all can go back to the hobbies and interests we love most. And have a life again! Take care!
❤❤❤
Tgis all sounds very relatable
WoW so young an age to get me/cfs - i hope some clues comes out of this research, as to the cause, and/or either a cure or a 'how to manage it' me/cfs. I notice the younger age groups are getting younger because i got me/cfs at age 15. Lets hope this research gives us, and you, some hope for a cure.
Please don't call it chronic fatigue syndrome.The name of the disease is myalgic encephalomyelitis, or ME.
It's the same thing.
Yea, I guess the medical community is trying to change the name from Chronic Fatigue Syndrome to Myalgic Encephalomyelitis. Not quite sure why but to me, it seems that it gives the disease a more medically valid terminology and therefore, possibly more attention and research.
Hi Millie, my auntie’s name was Millie. Do you recall what medicine you were given, at the time you became ill. That is, before you became ill.
💙👌💙