One of my dear friends – also an ME mum – posted this a while ago:
“Today I am just tired and sad. Afraid to fall into the big black hole. Will not go there! Tomorrow is a new day. There’s always hope, right?”
That day, she was the one who needed support. A few days before it was me. Tomorrow it’ll be another.
– Always hope, my friend. Always H O P E!
But it’s not always easy to find. And remember: It is allowed to be tired and sad from time to time! Never feeling sad and tired would be very strange, indeed unnatural. We live in an extreme situation, and must be allowed to react! That we are tired and sad, doesn’t necessarily mean that we must fall into the black hole. Or in the ditch. Or slam our head in the wall – whatever you call it. But sometimes the edge of the black hole is dangerously close. Then I’ll take as good a rest as I can. Sometimes I actually forget about all and everything, even my own birth date. Then it has gone out of controlm and I have to ask for a short sick leave. I have to catch my breath. And I’ll go walk in the dark and cry – sometimes even roar! I speak with specially selected friends. Not the kind of friends who simply MUST come with “good” advices… And I write. Some of the things I write ends up here. I sincerely hope that what I and my fellow ME mums write on this blog may be of help to some of you who read it.
– Hold on, my friend! We will hold you. Always!
The situation wears us out. We get tired of fighting to be believed and constantly having to defend the need for shielding and protection from sound, light, touch and the smallest activity. Tired of explaining that it is impossible to get well from ME by straighten up and pulling oneself together. Tired of shielding, protecting and care giving. Fighting for essential help. Sad because life with ME provides such great challenges and limitations, and of seeing our children very sick for a long time. If we did not react and need to take a break sometimes, well, we would’ve been robots. And we’re not. We are very much alive people, with completely normal and healthy reactions to the absurd situation we are in.
However, there is immense support and strength in the fellowship with the other ME mums. The ME mums are the only ones who can fully understand my situation. I don’t know what I would have done without them. I was “picked up” after commenting on an ME web page and asking for them. What a relief! It’s almost another era. Before they found me, I felt so alone and had no one who could confirm that what I observed was even possible. And I could not understand what was happening to my daughter.
Now I understand that all the weird symptoms are common in ME – to be exhausted and not being able to endure sound and light is only a fraction of ME. It is crucial to understand as much as possible, both to help my daughter and to stay sane myself! I am so grateful to the other ME mums. For all they teach me, and that I may be allowed to contribute however and whenever I can. Mostly from home, through the Internet.
We’re stuck in our homes but are still together. We are there for each other – just a click away. We cry for each other’s children, we cheer, we comfort, we complain, explain, and support each other. And we rejoice every time one of the kids gets better, or even well.
Thank you, dear co-ME mums. Thank you for being there!
Written and translated by @fryvil