I really hate missing out on stuff.
Over the years I’ve gradually become a pro at it; learning to avoid commitment, learning when to give an excuse and when to wave the CFS flag, and learning when to say the goodbyes and when to just drift away and leave quietly.
When I was in uni and still not accepting that I had Chronic Fatigue Syndrome I would have all sorts of coping mechanisms for parties or nights out on the town. I would often drive myself and not tell anyone – this meant that no-one could ask me for a lift and then I could leave as early as I liked and not be dragging anyone away with me like a giant party pooper.
My favourite one when heading into a club was to ‘forget’ to bring my I.D. – I was young enough and they would check me every time. I wouldn’t be able to get in and I would ‘regretfully’ say goodnight and go home. If I finally felt as though I couldn’t blow off a friend one more time (while still remaining their friend) I would just hide in the toilets and come out at intervals and pretend I’d been on a different dance floor, and would order plain cranberry juice and pretend that I was drinking a vodka mix.
Over the years this got easier. As I started to understand and accept my CFS and my close friends knew and understood about it too I could be more open about what was happening. When going to house parties I would check with the host to see if I could use their bed for a mini lie-down at intervals. I became more confident at dashing expectations – if my friends expected me to stay out all night having a great time, I was more comfortable at just doing whatever I felt able to do.
That being said, my Chronic Fatigue was fairly mild until 2013 and the push/crash cycle of CFS meant that I could sometimes drink just as hard and stay out just as late as anybody else. If anything, the euphoria of feeling normal and the thrill of ‘defying’ my CFS meant that I often overdid it – there were nights where I danced every dance of the MelSamba group and I have some very fond memories of revelry and mayhem at the British Crown Hotel.
These days it’s much simpler – my Chronic Fatigue is so severe that I can only attend things if I’m supported by Guy or a close friend or family. I can’t drive myself to anything because then I’ll be too tired to enjoy myself. I usually plan to rest immediately before and after interacting with people and I always go in with a game plan of when and how to make my excuses. But even though it’s much easier now that I don’t feel I need to lie about my Chronic Fatigue Syndrome, the pain of missing out never gets less. And it happens so often. Here’s a snapshot of just a few weeks:
I went to a baby shower at my mother’s house. Before it all started I was lying in bed resting up for the party and I could hear all the sisters arriving and cleaning and setting out the food. Not only did I feel like an asshole for not helping, but the ache of missing out was so strong – I could hear the laughter, the chatter, all the bonding that was going on – I just wanted to be normal so badly.
My best friend has started playing at open mike nights and I haven’t heard her once. Not only am I missing out on hearing her play and on joining in the revelry and fun, there’s also the disappointment that I’m not there supporting my friend. This is just one more case when I’m not there physically or emotionally for my friends.
I missed a family lunch the other weekend. Family is the one thing I try to get to no matter what because I know that they won’t mind if I need to leave early or am a conversationless zombie. I also try to get to all the family functions because I’m losing contact with so many of my friends, and I feel like family is all that’s left to me.
Mother’s Day is coming up and the girls of the family want to prepare dinner – I know that while everyone is joining in together I’ll be on the couch resting so that I can have enough energy left for the dinner.
I have missed birthdays and dinners and impromptu nights drinking and dancing. But perhaps the worst is that now I am so ill, people have stopped inviting me to things. People assume (with reason) that I won’t be able to come, and very often that is the case – but I want the choice to be mine.