I was diagnosed with M.E. about 12 years ago, and I was poorly for about 3 years.
I then enjoyed an 8 year remission and actually complacently thought that M.E. was no longer part of my story.
Then in January 2019 it came back and I am slowly coming to terms with the fact that this is part of my life again, for however long it lasts this time.
Living with it
The most important part of living with it, for me, is living. I'm trying not to fight it every step of the way, as that feels like the worst possible approach. But I also can't contemplate giving in to it. There are also the challenges of it being mostly a hidden condition, feelings of shame and widespread misconceptions about it. I want to try and address some of that here.
Choosing to make the invisible known
M.E. can be a largely hidden condition. Personally I'm super private so always kept it hidden from anyone but a few very close people. When things get really hard, that isn't helpful. I need to ask for help, or understanding. So it's time to be open about this.
Exploding the shame
Getting away from useless emotions
Shame is an interesting emotion. And it is often misplaced. Shame is part of the reason I have been secretive about my relapse. It doesn't fit with my idea of myself, or with who I believe others think I am. And not being your authentic self with people really limits intimacy.
Learning more and being more open
When I was first diagnosed, this was a process of ruling out everything else. Now I've relapsed I cannot face going through that again, running the gauntlet of doctors that think you are malingering. It is misunderstood, but I'm going to learn more
Want to know more?
I intend to write about what I learn, paying attention to the changing energies of the seasons and how my M.E. and peri-menopausal body responds to swimming through this winter.
Check back here for more.