Sorry for sounding blunt, but sometimes being disabled can really suck. You can think about phrases like "Hang in there", "Just keep swimming", or "Keep calm and whatever", but sometimes these just don't work. However, just because things might suck sometimes, it doesn't mean you have to give into negativity.
A few years ago, I let issues with Para Transpo, housing, home-care, and even the winter weather get the better of me, and I put myself in a real rut. I got out of my funk fairly quickly, but the negativity remained.
Very recently, I found out that a friend of mine, who also has Joubert syndrome, is going through some stuff. *Withholding my friend's name, and what that "stuff" is for obvious reasons.*
My friend's extremely positive attitude in dealing with the aforementioned "stuff" is a real inspiration (and that's not something I say often!) So from now on, thanks to this inspiration, I am going to try my hardest not to be as negative, especially towards things like the issues I mentioned above.
In fact, it's already working. I phoned to check on housing updates this morning, and didn't even get the slightest bit mad when they told me there wasn't any real change!!
So, even when things seem the worst, don't go to the dark side (even if they promise cookies!)
Cheers
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