As anybody living with a debilitating chronic illness can tell you, missing the really special or important moments is a terrible aspect of Chronic Life. It’s not just our moments that pass us by either, but the moments of people we care about.
Today my daughter went to her little cousin’s 2nd birthday party. They spent the afternoon building and making things in the woods at a nature reserve and judging by the photos and the worn out child who came home to me, a great & muddy time was had by all. My husband & my mum took my daughter to this event; I wasn’t able to lift my head from pillow or stand up for longer that 30 seconds until I took some of my emergency pain meds at 6 in the evening. Even then, I was only able to sit up long enough to have something to eat and a little catch up with my daughter.
Missing events like that one is an all too common occurrence when you living with chronic pain / chronic illness and it always feels awful. It’s so easy to feel guilty and useless in this situation, despite the fact that I know on a rational level that it’s not a choice I made, but rather one that was thrust upon me.
The guilt and sadness is even more pointed when the moment I’m missing is a huge and one-time event. If you’ve watched my YouTube videos, you’ll know that missing my brother’s wedding in September was devastating. There’s nothing that anyone can say and no positive thinking strategy that will make me ok with that; I simply will never be ok with that. While my brother understood that I was busy rocking with pain and throwing up every half an hour in the dark, he’ll never be ok with it either. That nugget of sadness will always be attached to his wedding day for both of us.
Just to add to the cheery tone of this post, I’d like to talk about funerals for a moment. I made it to the church for my beloved Nan’s funeral recently but only just made it through the mass and burial by taking rescue meds; turns out it’s difficult to do that discretely when you’re sat in the front pew of a silent church 🙈. That was actually my most successful recent attempt at attending a close relative’s funeral (although I completely missed the wake, which my Nan wouldn’t have been happy about – she would have much preferred me to have been well enough for a drink with the family & those who came over from Ireland!). Of course my abortive and rescue meds don’t always work at all. There have been other family funerals recently when I desperately wanted to be there to comfort people I love in their grief but just couldn’t move. To be stranded and unable to stand with them during those devastating moments just made my heart ache.
I wish I could end this post with some upbeat advice on how to deal with missing the important and special events in life. I’m afraid I can’t; it is awful and I don’t know how to make it less so. The one thing that helps me survive each disappointment is the understating and empathy shown by the people close to me. They remember the love and premium I placed on family before my condition worsened and they know that it’s my body that’s not cooperating; my values and love for them haven’t changed. I suppose if there’s a lesson to be learnt from this, it’s that the people who are truly understanding and don’t take their disappointment out on you when you can’t attend an important event are the ones that deserve to be prioritised when you have a spoon or two to spare.
How do you deal with missing special moments/events?
Wishing you good luck and happy days,
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