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I have been diagnosed with ME/CFS (and later also POTS). I would like to tell you what this means to me and how it affects those around me. You can also subscribe here: / @gezondnaarhonderd I hope that fellow sufferers will find recognition and acknowledgement in my video and that I myself can be better understood by the lovely people around me. By ensuring that this disease is visible and by making the neglect of this disease by the medical and political world clear, I hope to be able to leave my anger and frustration behind with this video to focus on my recovery. Who am I I really enjoy sharing information that makes life easier and more fun. In 2009 I was diagnosed with mild ME/CFS and POTS, but I only received the diagnoses when I made my illnesses much worse with an internship in 2022. Now I am slowly recovering from it and I would like to share everything I learn about it as well as how I deal with my ADHD in this story. What I say may also be relevant to people with longcovid/post-covid, Lyme disease, chronic Q fever and other PAIS or similar conditions. Contact You can always email me at [email protected] Time stamps My ME/CFS and my environment 00:00 Intro 00:16 What is ME/CFS My symptoms 01:04 Brain fog 02:55 Headache 04:12 Cortisol boost / hot flash 05:00 Preventing symptoms 05:37 Loss of muscle strength 06:30 Acidification 07:40 Cold sensitivity 08:37 What to do in case of symptoms 09:20 Poor or no sleep 09:53 What others can do for me - Understanding - Offering rest & thinking along with how to take it easy - Asking questions - Confirming feelings 11:40 - Taking over energy-intensive tasks 13:06 Having conversations / daytime activities 14:28 My recovery 15:26 Preventing PEMs 16:31 Saving energy 18:09 Because of my ME/CFS I had a years to make this video So I'm super happy that it finally worked. I hope to get rid of some anger and frustration with this Thanks for watching! Related videos Learning to live with less energy in which I explain the activities more clearly • Learning to live with less energy Recognizing a PEM • PEM symptoms - Episode #3 Podcast... Preventing or recovering from a PEM • ME/CFS symptom management - Episode #... Links Listen to the podcast Living with ME/CFS and POTS now also on Spotify, Apple Podcasts, Amazon Music, Castbox, Goodpods and Overcast. ME/CFS and the figures briefly explained: https://me-cvsvereniging.nl/me-cvs/wa... More figures and explanation about ME/CFS: https://mecvs.nl/informatie-mecvs/wat.... Thanks to all the dear fellow sufferers in the ME/CFS Facebook group. (Group name: Myalgic Encephalitis (ME) and CVS) I have also learned a lot from you and experience a lot of support from the group.