today, May 12 is international ME/CFS day
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Hello everyone! I am a freelance voice teacher and singer, I love chocolate and good food, I love to laugh and I love to travel for my life.
Since I have ME/CFS,
(since 2011, bad since 2015 my progression/onset was not sudden but gradual, there are also, symptoms I had all my life…)
travel is very hard for me. The other day I made my first trip and vacation in 7 years. And promptly a train broke down and instead of 7 hours, I was on the road for 10 hours. I have been recovering from this for 2 weeks now, so to speak. And I am incredibly lucky. I am comparatively well. I have been much worse. After all, I dared to make the trip and saw wonderful mountains and even “climbed” them.
My comrades-in-arms in this fight against ME/CFS are usually much worse. I have a mild course, which I am also slowly but steadily improving, with a diet according to Anthony William (have gone from Bell 30 to Bell 60). I have been very lucky.
What I miss is not only having limited ‘spoons’* at my disposal, i.e. just being able to do a lot, a lot in a day and also being allowed to go over my limit sometimes without having to pay for it right away. I miss dancing regularly, I miss being free to plan vacations and trips, I miss being able to go to concerts when I want, being able to see friends at all without worrying about what it might do to my energy budget.
In general, control plays a big role in my life, because otherwise I would be flat all the time. Pacing is the name of the technique with which one consciously divides one’s energy in ME/CFS, so that one doesn’t simply collapse and can’t get up for hours or days. Been there, done that.
I am already professionally good at meditation, even if it is not traditional mediation, I am fit in mindfulness work, do somatic body work and without positive thinking, I don’t think I would have made it this far. I can say with certainty, my mindset is not the main problem. It’s tangible, physical.
Today on #LiegendDemo day we are challenged to show up and say what we are missing. So I’m going to be bold. I am still Julia, with all my desires and abilities, only sometimes I need a cane (which is a big help to me), or I simply cannot do as much as others.
Disability and chronic illness is so taboo, as if people who are affected are not so much more, they have professions and dreams, are fashion fans or love football.
So I was allowed to learn a lot the last years, through my illness, even if it leaves me more and more (GSD). What I have learned, I pass on to my clients. They profit from my experiences. As in any coaching, the active experience is important, because without experience techniques and conversations are just empty. Ineffective. So someone who has experienced a lot, grown and developed, is usually a more effective coach than the person who lacks these experiences. So my illness, my experiences with it do not make me worse. This is also true for making music. With the abysses of the soul that we have encountered, we grow musically.
So we, people with chronic diseases are not our disease. Not at all. Yes, it gives us extra tasks, but we are still ourselves.
I also miss that society, that people around me, don’t think in such black/white categories anymore. That they don’t write off sick or disabled people.
Don’t assume that a sick person can’t come to the birthday, ask if she wants to come. Maybe what she needs. And if she can’t come, maybe you can do a little facetime date with everyone? Don’t assume that someone can’t do their job anymore, or even do it ‘well’ because of an illness, ask.
To do that, you have to listen first. And just as politics does not take ME/CFS seriously (not just since yesterday, there are no treatments and hardly any research), it is socially a taboo subject to talk about diseases and disabilities. And: not every disease or disability can be seen from the outside. You don’t have to. Listen when someone communicates their limitations. Compassion not pity. With each other, instead of exclusion.
ME/CFS can really affect anyone. In general, no one is immune to disability or illness. There is no need to be afraid. No. But I suspect it is fear that is responsible for people not looking.
On the photo I was just in Locarno and had experienced my first vacation in 7 years and was happy and full of sun. Now I am back home, and everyday life and work have me again.
With these ‘brave’ words, which may also ‘nudge’ here and there but hopefully positively shake up, I greet everyone sweetly, on #mecfsawareness day!
And should I not have mentioned it:
you can also book me,
as a vocal coach &
performative, experimental loopstation artist with my “Intellectual Prayers”
-> my experiences only make my work more effective, more expressive, I promise,
♥, Julia
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#MECFS #mecfsawareness #millionsmissing4action #MillionsMissing #mecfsrecovery #mecfswarrior MillionsMissing Germany Liegenddemo 12.5.23
*The spoon theory says people without disease or disability , able bodied, have eg 50 000 spoons at their disposal, and can do virtually anything they want to do in a day and still have spoons left in the evening to brush teeth and go to bed. People who are not able bodies have less spoons, sometimes they have only 50 but sometimes they have only 4. And brushing teeth is 1 spoon. Showering is maybe 2 spoons, and making yourself something to eat is also 2 spoons. Then the spoons are used up for the day and you can only lie down.
