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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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"One year on: what I would like my friends to know" (October 9)

SuzieSam

SuzieSam

Senior Member
Messages
201
Location
Israel
This:

"I have seen how even when we still have so many limits and still are sick, those with M.E actually try twice as hard as the average person to keep living their life, and try so many things in the hope of getting better, but are often only able to achieve a fraction of what others can. Its like living with the functionality of an 85 year old (and for those with severe M.E, that is actually the observed functionality)."

Really hit home for me. It's such a relief to read things written by fellow ME sufferers. I push myself too hard to care for my teenage kids and husband. I've made myself more ill. Knowing that we're a whole spread out community of people with similar stories is helping me see that I HAVE to stop this. I've tried so hard - it's not a personal failure. I'm very ill. I must rest. They can cope. I'm the one who is suffering, and will continue to do so long after the kids have left home.

It's so hard to admit, but yes, I'm seriously ill. And my husband just has to cope with the harshness of that fact. And stop laying on the guilt.
 
SuzieSam

SuzieSam

Senior Member
Messages
201
Location
Israel
It is SO maddening. In the 9 years I've been ill I've seen several people I know go through cancer, surgeries and chemo, and thankfully return to full lives. I'm so jealous. I'm still here, now 41, desperate to be well, worse than ever.

As one of the ME doctors says, I think Nancy Climas - I'd rather be HIV positive. And I'd rather be paralysed from the waist down, but otherwise healthy and energetic. Able to be out in the world again, with people, talking, laughing, living!

I'd swap this for that in a heartbeat.
 
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