This life is like a tightrope higher than you can imagine...

How can we walk across it and balance all that we need to? Physically, mentally, medical treatment, trying to live and do what we can, and family-wise. 

How do we balance doing anything vs PEM? Activity levels and resting (or being completely unable to do any activity) vs muscle loss from lack of movement. Medication to relieve symptoms vs side effects. Illness vs its comorbidities.  

It feels impossible and there is such a long fall. That is ME (and many other illnesses). 

We all make mistakes in life. Some big, some small, it’s how we learn. But no matter how many catastrophic mistakes I make with ME and pacing I can’t seem to learn much because I remain in the same impossible situation. Walking the same tightrope with the ability to tumble further than I could ever imagine. 

I am really struggling at the moment to balance the different aspects of my life. 

This isn't something new but it's really getting to me at the moment that I truly can't win. 

My illnesses all need different management that all contradict each other.  How do I prioritise which of these debilitating things to try and help?  “if you don't use it, you lose it” but if I try to use my muscles I lose the little functioning I have. I've had to accept knowing I'm losing it. 

How do I balance my mental health vs my physical health? And it isn’t as simple as just letting one of them win. Leaving my mental health to suffer also affects my physical health as emotions are physically draining. But neglecting my physical health and doing too much leaves me in a worse of mental state. 

Being bedbound has negative effects on so many areas of physical health but there’s no choice about it. 

POTS can sometimes be helped by movement, subluxing joints need stronger muscles to support them, and the longer I lay in bed the more it happens, but I'm not physically well enough for physio. 

Gastroparesis isn't going to be helped by eating my meals at a reclined angle and being immobile but again there's no choice. I'm unable to even try to move around. 

The need for medical appointments vs the crash they bring. 

Sometimes it's the classic 'given an inch, takes a mile'. Not deliberately but because we have to. 

We make all make mistakes in life. Some big, some small, it’s how we learn. But no matter how many catastrophic mistakes I make with ME and pacing I can’t seem to learn much because I remain in the same impossible situation. Walking the same tightrope with the ability to tumble further than I could ever imagine.