I got the mail with the links! 
Links to what?
Pictures from the M&G
I already miss everything so much…
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End of tour = new album on the way 
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I really hope so ! I miss them so much already ! We decided to start saving money now for next tour… A bit every month… Like that we hopefully can do more 
even if it Will never be enough !
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That’s a great idea, I will do that too!
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I tried to find your account on Instagram. Am I doing something wrong? Can you give me more information so I can maybe find it? Thanks a lot! 
Dear @Fravaco, I read a bit in this topic and found some things sound familiar to me. I wanted to go to the MS concert but thought it’s not possible for me withe the oxygen and the problem that I can’t stand for long time. Then I saw the sale of tickets who were a little bit cheaper and they were seat tickets at the gallery. So we (my friend and I) decided to try. In case it wouldn’t work not too much money would be lost. So we came there just as MS startet his show. There was a huge stair to our seats. Gallery, always upstairs of course… I really was fighting (stairs are hell for me too) and finally I took my seat near the ceiling. I could enjoy a concert after I didn’t have the courage to go to one for a long time. At the end we could solve all the problems and I was so happy I tried. I can rely on your story. One of the differences is that people see the oxygen and I get all reactions you can imagine. I had to learn to live with it too. I also try to do as much as I can because I know there will be a time it will get even more worse and I don’t want to think one day to myself, shit, why didn’t I do it while I could. This became something like my life Motto. All I wanna say, I wish you a lot of strength and I hope you can enjoy as much as possible.
Sending you a big, big hug!!! 
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Oh wauw, I didn’t know that…
It’s difficult living like that… People should learn to understand that for people like us it’s extra hard to have a “normal” life.
Believe me, I can imagine. My situation is just the other way around. When you see me on the streets you can’t see that there is anything wrong. It’s only when people spend a bit more time with me, that they start to notice that I can’t do the same things they do. Take me for a walk and you’re home again within ten to fifteen minutes (that’s the longest I can walk without resting). But exactly because they don’t notice, I get sometimes very nasty reactions… I’m the lazy bastard because I don’t (can’t) work (spoken out by my own son, of all people, but that’s another story) , I’m the boring one because I almost never go out anymore, etc… But they don’t see what happens when I take of my “outside masks”, the screams of the pain, the trembling, the restlessness, the fear, the dark thoughts, the crying…
Exactly… It took me a long while to come to that conclusion… I wasted years thinking my life was over, that I couldn’t live this way. But it turned out I could… Now I have a bit of a setback, especially due to the uncertainty. I mean, a couple of years ago I had hope to live a rather long life even with the GBS. Now my life expectency is… “it could be any day”… It makes you think but it’s fucking scary also…
Sending it right back to you 
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Just saw your comment. I feel very close to you. I had the same feeling at the beginning of my illness. Nobody saw it but I couldn’t walk always less and less far. But maybe because I’m a woman or I don’t now why I didn’t get a lot of bad treatment because of that. I feel ashamed people can act like this. I’m so sorry. But I think like you said, they are not worth knowing us!
Im feeling so blessed to know you here and I’m looki g forward to a lot of fun we will have together. Now I really need some sleep. Good night sweetheart!
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