A normal teen would probably just accept the invite to these activites and not bat an eyelid. The trouble with those of us who live in chronic pain is that our bodies instantly tense up like we know what is to come. We have an instant STOP sign in our brains.
My thoughts when somebody offers to do something turn into;
I know from personal experience I still always put on the brave face and front. This usually involves pretending I am not hurting whatsoever, my joints are totally fine and I definitely don't feel light headed or dizzy. That act in itself, is exhausting. I find it very hard to let my true guard down around even my best friends, as if I feel that being my true ill self would make them feel super awkward around a girl who looks the same as them but cant keep up with normal social trips out. It's always hard knowing you have committed to spending time with a friend but not being sure if you will be able to lift your head off the pillow when the morning arrives. The simple task of getting up and getting dressed that would've taken me 20 minutes back in the day now takes me hours. Including wanting to make my self look presentable with makeup, it takes me a good 4 hours before I am ready to leave the house and that is difficult if my friends want to set out early.
I have had to learn to be assertive, something I find difficult as I am a huge people pleaser. I spent some time with a chronic illness psychologist towards the end of 2012 who told me to know and understand that I cant change my body or its limits. The illness already has a grip on you, you need to take a bit of control back otherwise you will become even more isolated. You have to listen to your body when you are out because if not you will suffer with extra pain and agony the next day on top of your usual amount. This is a mistake I make far too often. She taught me to not make excuses but to be honest with friends about how much you are really hurting but also let them know that it would be nice to see them.
If you are out and about try and plan rest breaks. Maybe suggest going for a hot chocolate or coffee so you can sit down, or find the shoe department in a store and rest (one of my favs, resting while looking at shoes). My uncle who suffered with lung problems once told me his trick of pulling his phone out and shouting to his wife " I've just got a text hold on a minute" so he could stop and catch his breath.
I myself am still learning techniques when I take a rare trip out with friends once a month.
Because I don't go out a lot I feel like I lack confidence and have lost a lot of my character. Aswell as being very scared of pain while outside my comfort zone, I worry if somebody is going to accidently knock into me or brush past me when I am out while my body is hurting. I wonder if anybody feels that too?
I am lucky to have three understanding best friends. My mum and these three girls are the people I spend my outdoor time with. Although my friends don't understand completely what is wrong with me, they take me for what I am and I hope they don't find the time they spend with me too miserable or boring. I unfortunately had to leave school in year 10 and lost all but those three friends, it hurt at the time but I now know they are my true friends and there for me come rain or shine.