Trying to find a balance between resting and engaging in normal daily activities is THE hardest thing to contend with, when battling chronic illness. Each time we decide to go out to dinner, go shopping or attend appointments we have to decide if we have enough spoons to get through that event. Spoons are a metaphor to help ration what limited energy we have. Part of the theory is accepting the days following the event your symptoms are heightened, the fatigue keeps you a prisoner to your bed.
So when us spoonies cancel our plans with you please don’t be offended, it takes so much for us attend. We’ll always have to pay for whatever plans we’ve attended but somedays we can’t comprehend having to deal with more symptoms or feeling 200x worse the next day. I can’t remember the last time I hit the town and stayed out until the sun rises, it’s not because I don’t want to because I’d love to but if I hit the town I’d end up in hospital for a few days.
Even attending a family meal can wipe me out for a day or two. Yesterday I had a lovely meal, really enjoyed being out of the house and getting dressed but as always my body is having a hissy fit- I slept for 14 hours after, today I’ve done nothing but sleep, hug my hot water bottle sat in my comfy pjs but now my short memory is acting up and I can’t even remember going out for lunch 😣 but regardless of how my body punishes me, I won’t regret anything.
I don’t go out the house often, maybe once or twice a month. Meeting a friend for a coffee takes 2 days of prep, over those days I gather as much rest as possible, I mentally prep myself around my anxieties and possible problems, I have to make sure I get my symptoms under control and get ready as I can’t have a shower, do my hair, get dressed, full stoma change and makeup all on the same day as that alone is enough for my body to hate me.
So if I ever cancel please don’t be offended, it’s nothing personal and it kills me to do it but choosing to go out at that time would be catastrophic to my health at the time. If you want to help, ask how you can assist me to attend our plans, be open to me using my wheelchair and mobility devices or ask me what I feel up to doing. Help me research where the wheelchair friendly places are or where the nearest car park is. I want more than anything to have the social life of women my age, I don’t want to be left behind because ‘I drain the fun’ or ‘I make everything about me’.
Yes, my disabilities are part of every decision I make but it doesn’t mean I can’t have fun or be the Robyn you know me as. I’m not sure if it’s because when people see me they think I limit the fun. Just know my illnesses and disabilities don’t define who I am, I love being involved and invited. Yes, I might need some assistance in attending and some times when I know I’m really going to struggle to bounce back after our plans I might have to cancel when I don’t want to but if anyone’s learnt how important your health is it’s me. It’s also important to my wellbeing that I socialise even if that means gossiping over a cup of tea in my pjs. I am 23 after all 😍