It will get better

Are you tired?  Get some rest! It will get better.

A lot of people think that having ME means that you are just really, really tired.  That you can rest for a while and it will get better.  Some people think that you are really sad and depressed and hide under the covers in bed.  They think  that ME is what you get because you are sad, depressed or traumatized  Then some people think that people with ME are tired of life and cannot see through the fog.  That if you just can find the bright rays of light, the things you like doing, then everything will be really good and back to normal.  Think positive thoughts and everything will be okay.

I am dead tired sometimes. Sometimes I am so tired I can’t lift my arms to scratch my own head.  Sometimes my energy level is so low that I can’t hear myself think, not to mention making my thoughts go where I want them to.   Sometimes my body can’t take any more and I am so tired I feel sick to my stomach.  I can’t do any more, won’t do any more.  But I don’t have ME.  Sometimes I feel that my energy reservoir is empty – or close to empty.  When my thoughts just swirl around in my head and are hard to catch , when all my energy is sucked out of my body and I feel like a rag doll without a spine, I know what helps.  Rest, sleep and relax.  And it gets better!

If I don’t feel like doing the dishes, getting the laundry done or decide what to serve for dinner – again, if I cannot stand the thought of all the repetitive boring chores that I have done every single day for what feels like half a million years, I can think  positive thoughts, remember bright episodes of life and the reasons why I actually do all these tasks all these years.  And it gets better.  But I don’t have ME.

My son is really tired – all the time.  He rests too – all the time.  Or he sits in the recliner – resting.  He has been resting for almost 2 years now.  We are waiting for it to get better!  He can be sad or upset, but that is not the reason why he hides under the covers.  He has already been hiding under the covers for 2 years.  We are waiting for things to get better.

The boy is not tired of life. He was not tired of life before he got sick, and he still has a huge appetite for life.  He can see through the fog, all the rays of light far away and he dreams of all the things he likes doing – that he hopes he will do again, when only it gets better.  His reservoir of energy is empty – or close to empty.  His thoughts swirl around and are hard to catch and hold on to more than a few minutes at a time.  He can’t, but he wants to!  He is resting, relaxing and sleeping.  It still is not getting better!  He does not want to do the dishes either.  But he does want to go to school.  He does not want to do the laundry, but he does want to get his driver’s license.  He does not want to make dinner, but he does want to hang out with the boys.

Sometimes he uses all his energy on a little bit of schoolwork, or he chooses to meet one of his friends for a short while.  Later he has to pay the debt.  And the debt is not paid by getting a good night’s rest.  Not by two nights.  Not even by three or four.  This is ME.

He does not want to do all the «musts», because his musts are the only things he does every day.  But he has a lot of wants.  And when all the wants get too strong and powerful – and all the dreams and wishes so clear and bright in his head when he is «resting» – what positive thoughts can he think?  What bright rays of hope can he cling to?

We are waiting for it to get better.

By H R

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