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This weekend has been genuinely interesting when it comes to awareness. I previously considered May 2017 as starting point of ME symptoms. It wasnât, thatâs when it worsened. Iâve had PEMs for well over a decade, close to 2 I think. I just called them âflu w/o feverâ #NEISvoid
Same for thinking âdo I have chronic painâ I kept using October 2017 as starting point. As thatâs when the widespread pain increased. It got worse, but it didnât start there or then. It has been present much longer.
The imposter syndrome has been strong on everything, but Iâm only now realising that worst severity is not a requirement. Itâs not suffering olympics until you can say âthatâs itâ. Seeing only the most severe cases represented has mental impact, I felt so fake for years #NEISvoid
Obviously having doctors confirm the idea that youâre not yet doing bad enough to consider what you have as real truly doesnât help either. At the same time I can no longer ignore its presence and impact. Iâve started to respect what PEMs are telling, respecting the need to rest.
As for being #pwME, I can also no longer ignore that aspect. Not as much as I could. Iâm mostly housebound/bedbound, and I hadnât thought Iâd say that but to me that isnât as bad as I previously thought. Listening to my body is the first step, neglected by me and my doctors.
Thinking the fatigue isnât that bad is a dangerous line of thought. So is thinking you should finish your activity when the telltale signs of my PEM sweating attacks hit. In secondary school, I missed about 3-5 days of school a month for âflu w/o feverâ, what Iâm realising is PEM
It made me feel guilty, missing so much for something thatâs not even that bad? Yet at the same time, the second day was always worse than the first and I became aware that it was so necessary to rest. I wasnât skipping, and it wasnât purely stress either.
Surely it was worsened by stress, by feeling the pressure of everything I needed to do knowing my energy wouldnât reach and I definitely couldnât write as fast as others. But it wasnât just stress or stress induced: it was PEM.
In hindsight itâs amazing to see how much I accomplished: I did 7 years of secondary, with frequent PEMs, with pain from #hEDS constantly over-stretching my fingers while writing. With MCAS allergies, and homemade isotone solutions to battle orthostatic intolerance.
And I did that all without having a clue, thinking it to be stress. But at what cost did I push through? How much has what I did back then been affecting me now? Was it truly worth it? I really donât know. But at least Iâm aware now, and itâs making sense.
