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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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visit at my home from the ME/CFS one i talked to on phone the other day

I had the other with ME/CFS I rang the other day come an visit. :)

Amazingly she turned out to be my primary school teacher who apparently first developed ME/CFS when I was there.. (she thinks it was the year before I was in her class... anyway its close to when I had her as a teacher and it appears she had ME/CFS while teaching me).
(coincidence or what? I had a couple of ME/CFS incidents in my childhood so think I did catch it in childhood but then had it lay like dormant for a long time)

It took a little while to find a time when we both were well enough to meet (it was a situation of she was too ill when i was going to invite or I was too ill to have visitors when she was going to visit).. finally it sorted out and we had a time when we both were well enough to physically meet at my place. :)

We both had quite a good chat :) with her leaving when she could see I was getting wrecked. (its good to have someone who dont ignore what they are seeing and can see when you are starting to crash :) ).

We would of looked funny to anyone who didnt understand this illness... she legs up across my couch at one point, while I was laying across couch and a stall.. For anyone who cant notice the difference of those who have ME/CFS, I think they must be half blind.

She left forgetting her purse and phone and hence had to drive back.. only to find me looking for my own phone which I had miplaced to try ring her to tell her she'd left purse behind. So we then were both searching my house for our missing stuff :D hahah a real bonding experience...
(I do think some good comedies could be written just from observing CFS/ME people)

Comments

I am so glad you had someone visit you with this illness. It really helps you not feel so alone. And I totally agree about CFS and how people don't realize when you are starting to slump. I have fibro bad and my friends will say, "let's sit at the bar on the stools" and I always feel pissed off. A stool with no back is not good for us CFS folk. Another friend of mine always comes over and makes herself home on my couch, nevermind that I am in pain and wanting to lay down.

I hope you keep in touch with her!!
 

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