The sky is not the limit

If there’s only one point I manage to coherently get across during this 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.

8 thoughts on “The sky is not the limit

  1. My heart, love & prayers go out to you with lots of comforting hugs! I pray for a cure one day, not too far off! Until then, take comfort knowing you are not alone! With so much love, Anni

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  2. Excellent snappy blog. A very timely reminder not to go bonkers. I’ve fluctuated too much recently. Definitely need to slow everything down.

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    1. Benjamin Kidd-Bentley May 25, 2019 — 12:59 pm

      Thank you. I always felt guilty about using my wheechair because I can Walk (bit like a plodding donkey).
      I think this is an example learning to live along side instead of the fighting… which exhauts you anyway.
      I use it all the time now knowing that if I do, I will make to going places that I wouldn’t have done before like walking around the house. X

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      1. I can completely relate to that!

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  3. So, so true! Thanks for writing this.

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  4. I soooo needed to read this today. Thank you for sharing some of your lessons of life with ME. As someone only diagnosed last March I am still learning the boundaries of this insidious illness. I am also only starting to learn that as much as folk want to help you, they really don’t get it… “This too will pass,” ” It will burn out. ” Really? What if it doesnt ? What if this is as good as it gets? What then? Am I to made to feel like some kind of failure because I didn’t mend, don’t get better? I’ve enough emotional battles of my own trying to settle into these new boundaries without you adding to them. Sorry about the rant, it’s just good to be able to voice some of my frustration with someone who understands. As a newly diagnosed ME person I am so thankful for your sharing including your advice to work with the illness rather than trying to push through it. God bless you in your doing and your resting this day.

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  5. Great simple explanation of one of the major problems with ME

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  6. Really good simple explanation of one of the worst aspects of ME.

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