Chronic Pain and the Erosion of Self 5: Missing Special Moments 

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,

Kindra x

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5 thoughts on “Chronic Pain and the Erosion of Self 5: Missing Special Moments 

    1. Hi Claire. Thanks for sharing! Will check out your blog & FB page. I’m sorry you understand all too well what I’m talking about but it’s comforting to be reminded that there are people out there who understand. Chronic Pain can be so isolating x

      Liked by 1 person

  1. This is so true, people want us to be ok with this. But no matter how much I try, it is just too dang hard.
    I do try to be gentle with myself and I know I just can’t be there, but there are times when it really, really sucks.
    It doesn’t matter if people understand, in my heart I don’t.

    I’m better with happy things. I feel I’m the one who missed out. I try to live in the fact that my loved ones can still do these things. But it hurts that I’m no longer invited to most things because they don’t want to hurt me since I can’t go. It hurts more because I now feel like I’m not wanted either. after all…Why bother inviting, she won’t come anyway.

    Right now my father is declining rather rapidly due to liver failure and my sister has to be the sole caretaker. Not being able to help with this is gut wrenching. The stress of it is making me sicker and I just can’t seem to let it go. My sister and my father understand, but I see how much she does and how it is taking it’s toll. I regret I can’t spend more of this time with him. I’m afraid when it ends I won’t be able to go to the funeral. No amount of meds can stop the vertigo when it hits and the stress, well that causes more vertigo.
    How would I ever be okay with that?

    thank you for writing this from the heart and daring to write something that doesn’t end in a happy note.
    That’s so hard to do.

    Liked by 1 person

    1. Thank you for stopping by and commenting. I can really relate to your situation. It’s awful wanting to help the people we love during tough times but just not being able to. If we could cure ourselves with sheer force of will then we would have by now. I’m reliable, capable and loyal by nature as I’m sure you are, but when body won’t cooperate what can we do? If we deny what’s happening then we end up collapsing at the feet of the people we’re trying to help, which isn’t at all helpful! There are things about this life that are not ok and never will be. Lying to ourselves won’t change that. I don’t think it’s healthy to pretend. Of course we try to see positives wherever possible but rose tinted glasses don’t do any favours, in my opinion anyway.
      Wishing you all the best x

      Liked by 1 person

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