If there’s only one point I manage to coherently make during M.E. awareness week, I want it to be this.
You cannot push through M.E
You cannot fight it in the same way you might fight other diseases and illnesses. I despise that rhetoric anyway. (If I ever die as a result of an illness please don’t ever say “she lost her battle but fought so hard” Eurgh.)
I strongly believe that with M.E. you must work with it; you must be on the same team as your body. M.E. myself and I.
Your body is struggling. It is not producing energy properly at a cellular level. That impacts EVERYTHING. You must be kind to it.
With this in mind, I feel it’s important to quit while you’re ahead. Take Saturday, for example, when I was out with friends for three whole hours. I probably did have enough energy in the tank to stay out for another hour. But that would have been living right up to my body’s limit; using 100% of my energy supply. If I hit that limit there is no more of me left to give. Nothing. No energy to function properly even at the most basic level; digesting food, processing what my eyes are seeing…
And absolutely no-one, even those fully fit and healthy, should be reaching their maximum limit. It’s just that with M.E. the maximum limit is far far far lower than it should be. And so we often feel we SHOULD surely be able to keep going and do more
It’s frustrating for us but our 100% is less than a healthy person’s 100%. Our bodies are broken at that cellular level. A healthy person would not be able to push through once they’d hit their maximum limit. It’s just that they hardly ever reach it, because their energy supply in abundant.
Instead I try to always do 50% or so of what I feel able to.
Let me tell you, that is HARD. When you rarely go out it would be so easy to get swept up in the excitement of BEING OUT OF THE HOUSE and staying out as long as you possibly can. The punishment you’d get from your body after doing that would be off the scale. I do do that sometimes. But it would be silly to do it often, or regularly. That’s the last thing my body needs from me.
How can I expect my energy supply to replenish if I am constantly using it all up? Every last drop of it. It never refills properly anyway, so…
That’s what I want you to know. That there is less energy in our tanks than in yours. That pushing through to achieve the things that you feel we should be doing is simply not possible. The energy supply simply is not there.